breast cancer case study nursing

Nursing Case Study for Breast Cancer

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Natasha is a 32-year-old female African American patient arriving at the surgery oncology unit status post left breast mastectomy and lymph node excision. She arrives from the post-anesthesia unit (PACU) via hospital bed with her spouse, Angelica, at the bedside.  They explain that a self-exam revealed a lump, and, after mammography and biopsy, this surgery was the next step in cancer treatment, and they have an oncologist they trust. Natasha says, “I wonder how I will look later since I want reconstruction.”

What assessments and initial check-in activities should the nurse perform for this post-operative patient?

• Airway patency, respiratory rate (RR), peripheral oxygen saturation (SpO2), heart rate (HR), blood pressure (BP), mental status, temperature, and the presence of pain, nausea, or vomiting are assessed upon arrival. Medication allergies, social questioning (i.e. living situation, religious affiliation), as well as education preference are also vital. An admission assessment MUST include an examination of the post-op dressing and any drains in place. This should be documented accordingly.
• The hand-off should be thorough and may be standardized. Some institutions have implemented a formal checklist to provide a structure for the intrahospital transfer of surgical patients. Such instruments help to standardize processes thereby ensuring that clinicians have critical information when patient care is transferred to a new team. The nurse should also prepare to provide education based on surgeon AND oncologist guidance

What orders does the nurse expect to see in the chart?

• Post-op medications, dressing change and/or drain management, strict I&O, no BP/stick on the operative side (rationale is to help prevent lymphedema – Blood pressure (BP) measurement with a cuff on the ipsilateral arm has been posed as a risk factor for the development of LE after-breast cancer therapy for years, regardless of the amount of lymph node excision.)
• Parameters for calling the surgeon are also important. The nurse should also check for an oncology service consult.

After screening and assessing the patient, the nurse finds she is AAOx4 (awake, alert and oriented to date, place, person and situation). The PACU staff gave her ice due to dry mouth which she self-administers and tolerates well. She has a 20G IV in her right hand. She states her pain is 2 on a scale of 1-10 with 10 being the highest. Her wife asks when the patient can eat and about visiting hours. Natasha also asks about a bedside commode for urination and why she does not have a “pain medicine button”. Another call light goes off and the nurse’s clinical communicator (unit issued cell phone) rings.

The nurse heard in report about a Jackson-Pratt drain but there are no dressing change instructions, so she does not further assess the post-op dressing situation in order deal with everything going on at the moment. She then sits down to document this patient.

Medications ordered in electronic health record but not yet administered by PACU: Tramadol 50 mg q 6 hrs. Prn for mild to moderate pain. Oxycodone 5 mg PO q 4 hrs. Prn for moderate to severe pain (5-7 on 1-10 scale) Fentanyl 25 mcg IV q3hrs. Prn For breakthrough pain (no relieve from PO meds or greater than 8 on 1-10 scale) Lactated Ringers 125 mL/hr IV infusion, continuous x 2 liters Naloxone 0.4-2 mg IV/IM/SC; may repeat q2-3min PRN respiratory rate less than 6 bpm; not to exceed 10 mg

BP 110/70 SpO2 98% on Room Air HR 68bpm and regular Ht 157 cm RR 14 bpm Wt 53 kg Temp 36.°5C EBL 130mL CBC -WNL BMP Potassium – 5.4 mEq/L

What education should be conducted regarding post-op medications?

• New post-op pain guidelines rely less on patient-controlled analgesia (aka “pain medicine button”) than in previous years. Most facilities will have an approved standing protocol (i.e., “Multimodal analgesia and Opioid Prescribing recommendation” guideline) or standing orders. The patient must be instructed on how to rate pain using facility-approved tools (aka “pain scales”). She should also report any medication-related side effects and reinforce there is a reversal medication in case of an opioid overdose.

What are some medical and/or non-medical concerns the nurse may have at this point? If there are any, should they be brought up to the surgeon?

• The nurse may request an anti-emetic such as ondansetron 4 mg IV q 6 hrs prn nausea vomiting (N&V) since it is not uncommon post-op for the patient to have N&V. The rate of LR is a little high for such a small patient and could cause electrolyte imbalances. The nurse may also inquire about the oncologist being on the case and ask if the surgeon has discussed reconstruction with the patient yet. She may also want to ask about dressing change orders.

Natasha sleeps through the night with no complaints of pain. Lab comes to draw the ordered labs and the CNA takes vital signs. See below.

CBC HGB 7.2 g/dl HCT 21.6%

BMP Sodium 130 mEq/L Potassium 6.0 mEq/L BUN 5 mg/dL

BP 84/46 SpO2 91% on Room Air HR 109 RR 22 bpm

What should the nurse do FIRST? Is the nurse concerned about the AM labs? AM vital signs? Why or why not?

• Check the dressing and drain for bleeding (assess the patient). The patient should also sit up and allow staff to check the bed for signs of bleeding. Reinforce the dressing as needed. Record output from the drain (or review documentation of all the night’s drain output). Labs and vital signs indicate she may be losing blood.

Check the dressing and drain for BLEEDING (assess the patient). The patient should also sit up and allow staff to check the bed for signs of bleeding. Reinforce the dressing as needed. Record output from the drain (or review documentation of all the night’s drain output). Labs and vital signs indicate she may be losing blood.

What orders does the nurse anticipate from the surgeon?

• The nurse should expect an order to transfuse blood for this patient. Also, dressing reinforcement or change instructions are needed in the case of saturation)

How should the nurse address Natasha’s declaration? What alerts the nurse to a possible complication?

• First, the complication is that “Kingdom Hall” is the site of worship for Jehovah’s Witnesses. They do not accept ANY blood product, not even in emergencies. It is vital the nurse determines the patient’s affiliation and religious exceptions for medical care before moving forward. Next, employ therapeutic communication to elicit more details about Natasha’s concerns. Say things like, “tell me why you think you’re not attractive?” She may discuss reconstruction options or ask the patient to write down specific questions about this option to ask the provider later. Ask about getting family in to provide support. Seek information to give the patient about support groups and other resources available (as appropriate, ie. prosthetics, special undergarments/accessories, etc)

The surgeon orders 1 unit packed red blood cells to be infused. The nurse then goes to the patient to ask about religious affiliation and to discuss the doctor’s order. After verifying that Natasha is not a practicing Jehovah’s Witness, the nurse proceeds to prepare the transfusion.

What is required to administer blood or blood products?

• First, the patient’s CONSENT is required to give blood products. The nurse must also prepare to stay with the patient for at least the first 15 minutes of the transfusion taking a baseline set of V/S prior to infusion. Then, V/S per protocol (frequent). Education is also required. The patient should report feeling flushed, back or flank pain, shortness of breath, chest pain, chills, itching, hives. Normal saline ONLY for infusion setup and flushing: size IV 20g or higher. Always defer infusion time limits to “per policy” because this can differ vastly

How should the nurse respond to this question?

• Planning for post-op cancer treatment should have begun prior to the surgery. Ask the patient if she has discussed plans with her oncologist. Refer to any specialist documentation to see if this is mentioned. Remind the patient of the specialist’s assessment and planning information. Reinforce that testing of the tissue may change the course of treatment as well. Provide education AS PER THE PATIENT’S STATED PREFERENCE and/or resources based on what the plan includes (ie. chemotherapy, radiation, further surgery. Continually assess and reassess patient understanding. Include family and/or support with the patient’s approval.

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View the full transcript, nursing case studies.

This nursing case study course is designed to help nursing students build critical thinking.  Each case study was written by experienced nurses with first hand knowledge of the “real-world” disease process.  To help you increase your nursing clinical judgement (critical thinking), each unfolding nursing case study includes answers laid out by Blooms Taxonomy  to help you see that you are progressing to clinical analysis.We encourage you to read the case study and really through the “critical thinking checks” as this is where the real learning occurs.  If you get tripped up by a specific question, no worries, just dig into an associated lesson on the topic and reinforce your understanding.  In the end, that is what nursing case studies are all about – growing in your clinical judgement.

Nursing Case Studies Introduction

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Breast Cancer Nursing Diagnosis and Nursing Care Plan

Last updated on January 28th, 2024 at 08:03 am

Breast Cancer Nursing Care Plans Diagnosis and Interventions

Breast Cancer NCLEX Review and Nursing Care Plans

Breast cancer is a type of cancer that involves the uncontrolled growth and division of breast cancer cells. In the United States, breast cancer is the second most common types of cancer in women, after skin cancer.

Signs and Symptoms of Breast Cancer

• Breast or underarm lump – usually the first symptom of breast cancer; does not go away; can be seen through a mammogram; may be painful or tender
• Swelling – may be seen or felt in the breast or in the lymph nodes located in the armpit or collarbone area
• Indentation or flattened area on a breast
• Changes in breast size, texture, color, contour, or temperature
• Unusual nipple discharge – can be bloody, clear, or any other color
• Other nipple changes such as inward pulling, dimpling, itchiness, soreness, burning sensation

Types of Breast Cancer

• Ductal Carcinoma in Situ (DCIS). The most common breast cancer type, ductal carcinoma occurs in 1 out of 5 new cases of breast cancer. DCIS is a local breast tumor that has not spread in nearby lymph nodes and other tissues. Some cases of DCIS are asymptomatic, while others show bloody nipple discharge or a breast lump.
• Lobular Carcinoma. This type of breast cancer originates in the lobules, the glands where milk is produced. The most common symptoms of lobular carcinoma include swelling, thickening, and/or feeling of fullness in one region of the breast and inverted or flat nipples.
• Infiltrating or Invasive Breast Cancer. When the breast cancer has started spreading from its origin towards the surrounding tissues, it is classified as an invasive breast cancer. The symptoms of infiltrating breast cancer include a rash on the breast skin, dimpling, swelling, pain, and an immovable lump in the breast or armpit.
• Metastatic Breast Cancer. Also known as advanced or secondary breast cancer, metastatic breast cancer is the type when the disease has spread to other organs and parts of the body. The symptoms of metastatic breast cancer depend on where the disease has spread, but may involve bone pain, headache, jaundice , double vision, trouble breathing, belly swelling, weight loss, gastrointestinal problems, muscular weakness, confusion, and changes in brain function.
• Triple Negative Breast Cancer. This type of breast cancer is detected if the tumor produces only low levels of protein called HER-2 and does not contain receptors for estrogen and progesterone hormones. Triple negative breast cancers can be aggressive, thus the treatment protocol is usually different than other types of breast tumors.
• Male Breast Cancer. Breast cancer in males is rare. The symptoms such as lump in the breast or armpit and nipple discharge are the same as that of the females.
• Paget’s Disease of the Breast. This type of breast cancer occurs with ductal carcinoma. The symptoms of this disease include eczema-looking skin, scaly or crusty nipple skin, burning or itching breast skin, inverted or flat nipple, and yellowish or bloody nipple discharge.

Causes and Risk Factors of Breast Cancer

The exact cause of breast cancer is still unknown. However, the risk factors that may increase the chance of getting breast cancer are well-studied.

In general, breast cancer tumors develop from the rapid growth and division of abnormal breast cells (hyperplasia and dysplasia). Eventually, the cells accumulate and form a mass or a lump.

These abnormal breast cells may spread (metastasis) in the other parts of the breast, lymph nodes, or organs of the body.

The risk factors of breast cancer include:

• Gender – being a woman is the biggest risk factor of having breast cancer, although 1% of the cases occur in men.
• Age – 2 of 3 invasive breast cancer cases are seen in women aged 55 years or above
• Family History and Genetics– the risk is doubled if a woman has a first-degree female relative that has been diagnosed with breast cancer (mother, sister, or daughter)
• Past Medical History of Breast Cancer – if the patient has had breast cancer in the past, he/she is 3 to 4 times likely to develop breast cancer in the future; having had benign breast conditions in the past also increase the risk for breast cancer
• Race and Ethnicity – White women have a slightly higher risk for breast cancer than Hispanic, Black, and Asian women
• Exposure to Radiation – if the patient had radiotherapy to the face or chest to treat acne or another cancer type such as lymphoma , the risk for developing breast cancer is higher than average
• Obesity and being overweight
• History of Pregnancy – women who have had their first child after age 30 or have not had any full term pregnancy have a higher risk than women who have had full term pregnancy and/or gave birth before age 30.
• Breastfeeding – studies show that breastfeeding, especially for longer than 1 year, lowers the risk of breast cancer
• Menstrual History – women who had periods younger than age 12 have a higher risk of breast cancer; menopausing older than 55 years old also increases the risk
• Alcohol use and Smoking
• Hormone Replacement Therapy – HRT users have a higher risk of breast cancer
• Sedentary Lifestyle

Complications of Breast Cancer

• Pulmonary insufficiency
• Metastasis to other organs or parts of the body
• Cardiac disease

Diagnosis of Breast Cancer

• Breast Exam. This can be done daily through self-checking. During a breast exam in the clinic, the doctor will observe and feel/palpate the breasts and the lymph nodes in the armpit for any abnormalities such as lumps.
• Mammogram. X-ray of the breast or mammogram is the most common screening test for breast cancer. Women with no history of breast cancer are recommended to have a yearly mammogram once they turn 40 years old.
• Breast Ultrasound. This can determine if a breast lump is a fluid-filled cyst or a solid mass.
• Breast Magnetic Resonance Imaging (MRI). This is used to visualize the breast by creating pictures. MRI involves injection of a dye to see the interior of the breast.
• Breast Biopsy. The definitive way to diagnose breast cancer, biopsy involves taking a sample of breast cells to be studied under the microscope.
• Cancer Staging. After diagnosis, the oncologist will assess the extent or stage of breast cancer, from 0 to IV. Cancer staging depends on the blood test results (complete blood count and tumor markers (i.e., cancer antigen 15-3 or CA 15-3, cancer antigen 27.29 or CA 27.29, and carcinoembryonic antigen or CEA), CT/ PET scan, and other diagnostic results.

Treatment for Breast Cancer

• Breast Surgery. The removal of breast cancer cells through operation can vary depending on the size, grade, and extent of the tumor and disease.
• Lumpectomy – to remove small tumors and a margin of surrounding healthy breast tissues; also known as wide local excision or breast-conserving surgery
• Mastectomy – to remove the entire breast
• Sentinel node biopsy – to remove a limited number of lymph nodes and determine cancer spread in these areas
• Axillary lymph node dissection – to remove additional lymph nodes if the sentinel nodes show signs of cancer
• Medications. Several pharmacologic therapies have been used to treat breast cancer, such as:
• Chemotherapy – uses drugs to kill cancer cells. The most common chemotherapy protocols for breast cancer include combinations of anti-tumor antibiotics and alkylating agents, followed by taxanes.
• Hormone Therapy – used to treat breast cancers that are sensitive to hormones estrogen and/or progesterone
• Targeted Therapy – uses drugs that attack specific abnormalities in the cancer cell, such as human epidermal growth factor receptor 2 (HER2); an example is the use of monoclonal antibodies (MABs)
• Immunotherapy – utilizes the immune system to attack the breast cancer cells; examples include immune system modulators and checkpoint inhibitors
• Radiotherapy. Radiotherapy uses radiation or high-powered energy beams such as protons and X-rays to kill the cancer cells. This can last from 3 days to 6 weeks.
• External beam radiation – aims the energy beams at the affected body area
• Brachytherapy – places radioactive material inside the body in order to perform radiation therapy

Nursing Diagnosis for Breast Cancer

Breast cancer nursing care plan 1.

Nursing Diagnosis: Deficient Knowledge related to new diagnosis of breast cancer as evidenced by patient’s verbalization of “I want to know more about my new diagnosis and care”

Desired Outcome: At the end of the health teaching session, the patient will be able to demonstrate sufficient knowledge of breast cancer and its management.

Breast Cancer Nursing Care Plan 2

Nursing Diagnosis: Imbalanced Nutrition: Less than Body Requirements related to consequences of chemotherapy for breast cancer, as evidenced by abdominal cramping, stomach pain, diarrhea or constipation , bloating, weight loss, nausea and vomiting , and loss of appetite

Desired Outcome: The patient will be able to achieve a weight within his/her normal BMI range, demonstrating healthy eating patterns and choices.

Breast Cancer Nursing Care Plan 3

Nursing Diagnosis: Fatigue related to consequence of chemotherapy for breast cancer (e.g., immunosuppression and malnutrition ) and/or emotional distress due to the diagnosis, as evidenced by overwhelming lack of energy, verbalization of tiredness, generalized weakness, and shortness of breath upon exertion

Desired Outcome: The patient will establish adequate energy levels and will demonstrate active participation in necessary and desired activities.

Breast Cancer Nursing Care Plan 4

  Imbalanced Nutrition: Less Than Body Requirements

Nursing Diagnosis:  Imbalanced Nutrition: Less Than Body Requirements related to fatigue, emotional distress, and poorly controlled pain due to chemotherapy secondary to breast cancer, as evidenced by expressions of inadequate food intake, loss of interest in food, inability to ingest food, reduced subcutaneous fat, body weight 20 percent below optimum for height and frame, stomach cramps and constipation.

Desired Outcomes:

• The patient will be able to demonstrate a stable weight gain toward the goal with normal laboratory values.
• The patient will not show any indicators of malnutrition.
• The patient will be able to participate in specific interventions to gain appetite and increase dietary intake.

Breast Cancer Nursing Care Plan 5

    Risk for Infection

Nursing Diagnosis: Risk for Infection related to insufficient secondary defenses, immunosuppression, and chronic disease process secondary to breast cancer, as evidenced by damaged epidermal tissue, skin irritation on injection site, shortness of breath, presence of mucus in the saliva, nasal drainage, fever of 100.5 °F, sore throat and chills.

• The patent will be able to stay afebrile and achieve timely healing as appropriate.
• The patient will be able to identify and participate in interventions to prevent or minimize the risk of infection.

Breast Cancer Nursing Care Plan 6

Anticipatory Grieving

Nursing Interventions: Anticipatory Grieving related to expected decline in physiological health and perceived risk of dying secondary to breast cancer, as evidenced by alterations in eating habits, changes in sleeping patterns, activity levels, and communication patterns, shortness of breath, acute panic, expressions of fear and crying.

•  The patient will be able to recognize their own emotions and convey them effectively.
• The patient will be able to maintain the normal daily routine while planning for the future and looking ahead one day at a time.
• The patient will be able to express awareness of the dying process.
• The patient will demonstrate ways to identify anxiety to prevent going into a panic state.

More Breast Cancer Nursing Diagnosis

• Fear / Anxiety
• Risk for Altered Oral Mucous Membranes
• Risk for Impaired Skin Integrity
• Risk for Disturbed Body Image

Nursing References

Ackley, B. J., Ladwig, G. B., Makic, M. B., Martinez-Kratz, M. R., & Zanotti, M. (2020).  Nursing diagnoses handbook: An evidence-based guide to planning care . St. Louis, MO: Elsevier.  Buy on Amazon

Gulanick, M., & Myers, J. L. (2022).  Nursing care plans: Diagnoses, interventions, & outcomes . St. Louis, MO: Elsevier. Buy on Amazon

Ignatavicius, D. D., Workman, M. L., Rebar, C. R., & Heimgartner, N. M. (2020).  Medical-surgical nursing: Concepts for interprofessional collaborative care . St. Louis, MO: Elsevier.  Buy on Amazon

Silvestri, L. A. (2020).  Saunders comprehensive review for the NCLEX-RN examination . St. Louis, MO: Elsevier.  Buy on Amazon

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• Clinical Journal of Oncology Nursing
• Number 6 / December 2021
• Supplement, December 2021, Survivorship Care

Breast Cancer: Survivorship Care Case Study, Care Plan, and Commentaries

Amber Whitton-Smith

Rachael Schmidt

Kristie Howlett

Rachée Hatfield

This case study highlights the patient’s status in care plan format and is followed by commentaries from expert nurse clinicians about their approach to manage the patient’s long-term or chronic cancer care symptoms. Finally, an additional expert nurse clinician summarizes the care plan and commentaries, emphasizing takeaways about the patient, the commentaries, and additional recommendations to manage the patient. As can happen in clinical practice, the patient’s care plan is intentionally incomplete and does not include all pertinent information. Responding to an incomplete care plan, the nurse clinicians offer comprehensive strategies to manage the patient’s status and symptoms. For all commentaries, each clinician reviewed the care plan and did not review each other’s commentary. The summary commentary speaks to the patient’s status, care plan, and nurse commentaries.

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Sleep quality and associated factors among survivors of breast cancer: from diagnosis to one year postdiagnosis, cardiovascular disease incidence and cardiovascular health among diverse women with breast and gynecologic cancers, associations of demographic and social factors on health-related quality-of-life changes among older women with breast or gynecologic cancer.

Breast Cancer: Survivorship Care Case Study, Care Plan, and Commentaries

Affiliation.

• 1 Saint Louis University.
• PMID: 34800110
• DOI: 10.1188/21.CJON.S2.34-42

This case study highlights the patient's status in care plan format and is followed by commentaries from expert nurse clinicians about their approach to manage the patient's long-term or chronic cancer care symptoms. Finally, an additional expert nurse clinician summarizes the care plan and commentaries, emphasizing takeaways about the patient, the commentaries, and additional recommendations to manage the patient. As can happen in clinical practice, the patient's care plan is intentionally incomplete and does not include all pertinent information. Responding to an incomplete care plan, the nurse clinicians offer comprehensive strategies to manage the patient's status and symptoms. For all commentaries, each clinician reviewed the care plan and did not review each other's commentary. The summary commentary speaks to the patient's status, care plan, and nurse commentaries.

Keywords: breast cancer; care plan; case study; survivorship care.

• Breast Neoplasms* / therapy
• Survivorship*

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Breast cancer patient experiences through a journey map: A qualitative study

Laura ciria-suarez.

1 Clinical Psychology and Psychobiology Department, Faculty of Psychology, University of Barcelona, Barcelona, Spain

Paula Jiménez-Fonseca

2 Medical Oncology Department Hospital Universitario Central of Asturias, Oviedo, Spain

María Palacín-Lois

3 Social Psychology and Quantitative Psychology Department, Faculty of Psychology, University of Barcelona, Barcelona, Spain

Mónica Antoñanzas-Basa

4 Medical Oncology Department, Hospital Universitario Clínico San Carlos, Madrid, Spain

Ana Fernández-Montes

5 Medical Oncology Department, Complexo Hospitalario Universitario de Ourense, Ourense, Spain

Aranzazu Manzano-Fernández

Beatriz castelo.

6 Medical Oncology Department, Hospital Universitario La Paz, Madrid, Spain

Elena Asensio-Martínez

7 Medical Oncology Department, Hospital General Universitario de Elche, Elche, Spain

Susana Hernando-Polo

8 Medical Oncology Department, Hospital Universitario Fundación Alcorcón, Madrid, Spain

Caterina Calderon

Associated data.

Relevant anonymized data excerpts from the transcripts are in the main body of the manuscript. They are supported by the supplementary documentation at 10.1371/journal.pone.0244355 .

Breast cancer is one of the most prevalent diseases in women. Prevention and treatments have lowered mortality; nevertheless, the impact of the diagnosis and treatment continue to impact all aspects of patients’ lives (physical, emotional, cognitive, social, and spiritual).

This study seeks to explore the experiences of the different stages women with breast cancer go through by means of a patient journey.

This is a qualitative study in which 21 women with breast cancer or survivors were interviewed. Participants were recruited at 9 large hospitals in Spain and intentional sampling methods were applied. Data were collected using a semi-structured interview that was elaborated with the help of medical oncologists, nurses, and psycho-oncologists. Data were processed by adopting a thematic analysis approach.

The diagnosis and treatment of breast cancer entails a radical change in patients’ day-to-day that linger in the mid-term. Seven stages have been defined that correspond to the different medical processes: diagnosis/unmasking stage, surgery/cleaning out, chemotherapy/loss of identity, radiotherapy/transition to normality, follow-up care/the “new” day-to-day, relapse/starting over, and metastatic/time-limited chronic breast cancer. The most relevant aspects of each are highlighted, as are the various cross-sectional aspects that manifest throughout the entire patient journey.

Conclusions

Comprehending patients’ experiences in depth facilitates the detection of situations of risk and helps to identify key moments when more precise information should be offered. Similarly, preparing the women for the process they must confront and for the sequelae of medical treatments would contribute to decreasing their uncertainty and concern, and to improving their quality-of-life.

Introduction

Breast cancer is the most common cancer and the one that associates the highest mortality rates among Spanish women, with 32,953 new cases estimated to be diagnosed in Spain in 2020 [ 1 ]. Thanks to early diagnosis and therapeutic advances, survival has increased in recent years [ 2 ]. The 5-year survival rate is currently around 85% [ 3 , 4 ].

Though high, this survival rate is achieved at the expense of multiple treatment modalities, such as surgery, chemotherapy, radiotherapy, and hormone therapy, the side effects and sequelae of which can interfere with quality-of-life [ 5 ]. Added to this is the uncertainty surrounding prognosis; likewise, life or existential crises are not uncommon, requiring great effort to adjust and adapt [ 6 ]. This will not only affect the patient psychologically, but will also impact their ability to tolerate treatment and their socio-affective relations [ 7 ].

Several medical tests are performed (ultrasound, mammography, biopsy, CT, etc.) to determine tumor characteristics and extension, and establish prognosis [ 8 ]. Once diagnosed, numerous treatment options exist. Surgery is the treatment of choice for non-advanced breast cancer; chemotherapy, radiotherapy, and hormone therapy are adjuvant treatments with consolidated benefit in diminishing the risk of relapse and improving long-term survival [ 9 ]. Breast cancer treatments prompt changes in a person’s physical appearance, sexuality, and fertility that interfere with their identity, attractiveness, self-esteem, social relationships, and sexual functioning [ 10 ]. Patients also report more fatigue and sleep disturbances [ 11 ]. Treatment side effects, together with prognostic uncertainty cause the woman to suffer negative experiences, such as stress in significant relationships, and emotions, like anxiety, sadness, guilt, and/or fear of death with negative consequences on breast cancer patients’ quality-of-life [ 10 , 12 ]. Once treatment is completed, patients need time to recover their activity, as they report decreased bodily and mental function [ 13 ], fear of relapse [ 14 ], and changes in employment status [ 15 ]. After a time, there is a risk of recurrence influenced by prognostic factors, such as nodal involvement, size, histological grade, hormone receptor status, and treatment of the primary tumor [ 16 ]. Thirty percent (30%) of patients with early breast cancer eventually go on to develop metastases [ 17 ]. There is currently no curative treatment for patients with metastatic breast cancer; consequently, the main objectives are to prolong survival, enhance or maintain quality-of-life, and control symptoms [ 17 , 18 ]. In metastatic stages, women and their families are not only living with uncertainty about the future, the threat of death, and burden of treatment, but also dealing with the existential, social, emotional, and psychological difficulties their situation entails [ 18 , 19 ].

Supporting and accompanying breast cancer patients throughout this process requires a deep understanding of their experiences. To describe the patient’s experiences, including thoughts, emotions, feelings, worries, and concerns, the phrase “patient voice” has been used, which is becoming increasingly common in healthcare [ 20 ]. Insight into this “voice” allows us to delve deeper into the physical, emotional, cognitive, social, and spiritual effects of the patient’s life. This narrative can be portrayed as a “cancer journey", an experiential map of patients’ passage through the different stages of the disease [ 21 ] that captures the path from prevention to early diagnosis, acute care, remission, rehabilitation, possible recurrence, and terminal stages when the disease is incurable and progresses [ 22 ]. The term ‘patient journey’ has been used extensively in the literature [ 23 – 25 ] and is often synonymous with ‘patient pathway’ [ 26 ]. Richter et al. [ 26 ] state that there is no common definition, albeit in some instances the ‘patient journey’ comprises the core concept of the care pathway with greater focus on the individual and their perspective (needs and preferences) and including mechanisms of engagement and empowerment.

While the patient’s role in the course of the disease and in medical decision making is gaining interest, little research has focused on patient experiences [ 27 , 28 ]. Patient-centered care is an essential component of quality care that seeks to improve responsiveness to patients’ needs, values, and predilections and to enhance psychosocial outcomes, such as anxiety, depression, unmet support needs, and quality of life [ 29 ]. Qualitative studies are becoming more and more germane to grasp specific aspects of breast cancer, such as communication [ 27 , 30 ], body image and sexuality [ 31 , 32 ], motherhood [ 33 ], social support [ 34 ], survivors’ reintegration into daily life [ 13 , 15 ], or care for women with incurable, progressive cancer [ 17 ]. Nevertheless, few published studies address the experience of women with breast cancer from diagnosis to follow-up. These include a clinical pathway approach in the United Kingdom in the early 21st century [ 35 ], a breast cancer patient journey in Singapore [ 25 ], a netnography of breast cancer patients in a French specialized forum [ 28 ], a meta-synthesis of Australian women living with breast cancer [ 36 ], and a systematic review blending qualitative studies of the narratives of breast cancer patients from 30 countries [ 37 ]. Sanson-Fisher et al. [ 29 ] concluded that previously published studies had examined limited segments of patients’ experiences of cancer care and emphasized the importance of focusing more on their experiences across multiple components and throughout the continuum of care. Therefore, the aim of this study is to depict the experiences of Spanish breast cancer patients in their journey through all stages of the disease. To the best of our knowledge, there are no studies that examine the experience of women with breast cancer in Spain from diagnosis through treatment to follow-up of survivors and those who suffer a relapse or incurable disease presented as a journey map.

A map of the breast cancer patient’s journey will enable healthcare professionals to learn first-hand about their patients’ personal experiences and needs at each stage of the disease, improve communication and doctor-patient rapport, thereby creating a better, more person-centered environment. Importantly, understanding the transitional phases and having a holistic perspective will allow for a more holistic view of the person. Furthermore, information about the journey can aid in shifting the focus of health care toward those activities most valued by the patient [ 38 ]. This is a valuable and efficient contribution to the relationship between the system, medical team, and patients, as well as to providing resources dedicated to the patient’s needs at any given time, thus improving their quality of life and involving them in all decisions.

Study design and data collection

We conducted a qualitative study to explore the pathway of standard care for women with breast cancer and to develop a schematic map of their journey based on their experiences. A detailed description of the methodology is reported in the published protocol “Ascertaining breast cancer patient experiences through a journey map: A qualitative study protocol” [ 39 ].

An interview guide was created based on breast cancer literature and adapted with the collaboration of two medical oncologists, three nurses (an oncology nurse from the day hospital, a case manager nurse who liaises with the different services and is the ‘named’ point of contact for breast cancer patients for their journey throughout their treatment, and a nurse in charge of explaining postoperative care and treatment), and two psycho-oncologists. The interview covered four main areas. First, sociodemographic and medical information. Second, daily activities, family, and support network. Third, participants were asked about their overall perception of breast cancer and their coping mechanisms. Finally, physical, emotional, cognitive, spiritual, and medical aspects related to diagnosis, treatment, and side effects were probed. Additionally, patients were encouraged to express their thoughts should they want to expand on the subject.

The study was carried out at nine large hospitals located in six geographical areas of Spain. To evaluate the interview process, a pilot test was performed. Interviews were conducted using the interview guide by the principal investigator who had previous experience in qualitative research. Due to the Covid-19 pandemic, all interviews were completed online and video recorded with the consent of the study participants for subsequent transcription. Relevant notes were taken during the interview to document key issues and observations.

Participant selection and recruitment

Inclusion criteria were being female, over 18 years of age, having a diagnosis of histologically-confirmed adenocarcinoma of the breast, and good mental status. To ascertain the reality of women with breast cancer, most of the patients recruited (80%) had been diagnosed in the past 5 years. Patients (20%) were added who had been diagnosed more than 5 years earlier, with the aim of improving the perspective and ascertaining their experience after 5 years.

Medical oncologists and nurses working at the centers helped identify patients who met the inclusion criteria. Participants went to the sites for follow-up between December 2019 and January 2021. Eligible women were informed of the study and invited to participate during an in-person visit by these healthcare professionals. Those who showed interest gave permission to share their contact information (e-mail or telephone number) with the principal investigator, who was the person who conducted all interviews. The principal investigator contacted these women, giving them a more detailed explanation of the study and clarifying any doubts they may have. If the woman agreed to participate, an appointment was made for a videoconference.

A total of 21 women agreed to participate voluntarily in this research. With the objective of accessing several experiences and bolstering the transferability of the findings, selection was controlled with respect to subjects’ stage of cancer, guaranteeing that there would be a proportional number of women with cancer in all stages, as well as with relapses.

Data analysis

The data underwent qualitative content analysis. To assure trustworthiness, analyses were based on the system put forth by Graneheim, and Lundman [ 40 ]. Interviews were transcribed and divided into different content areas; units of meaning were obtained and introduced into each content area; meaning codes were extracted and added; codes were categorized in terms of differences and similarities, and themes were created to link underlying meanings in the categories. All members of the research team (core team, two medical oncologists, three nurses and two psycho-oncologists) reviewed the data and triangulated the outcomes between two sources of data: qualitative data from the interview and non-modifiable information, such as sociodemographic (i.e., age, marital status, having children) and clinical (i.e., cancer stage and surgery type) data. Following this process, we reached saturation of the interview data by the time we had completed 21 interviews.

Ethical considerations

This study was performed in accordance with the ethical standards of the Declaration of Helsinki, and its subsequent amendments. The study was approved by the Research Ethics Committee of University of Barcelona (Institutional Review Board: IRB00003099) and supported by the Bioethics Group of the Spanish Society of Medical Oncology (SEOM) 2018 grant. All participants received a written informed consent form that they signed prior to commencing with the interviews and after receiving information about the study.

Patient baseline characteristics

In total, 21 women with a mean age of 47 years (range, 34 to 61) were interviewed. Most of the study population was married (66.7%), had a college education (66.7%), and had 2 or more children (42.9%). All cancer stages were represented, up to 23.8% tumor recurrence, and most of the primary cancers had been resected (95.2%) (see Table 1 ).

Description of the breast cancer patient journey

The women diagnosed with breast cancer describe the journey as a process tremendously affected by the different medical stages. Each stage has its own characteristics that condition the experiences, unleashing specific physical, emotional, cognitive, and social processes. Additionally, the patients perceive this entire process as pre-established journey they must undertake to save their life, with its protocols based on the type and stage of cancer.

“ People said to me , ‘What do you think ? ’ and I answered that there was nothing for me to think about because everything is done , I have to go on the journey and follow it and wait to see how it goes” (Patient 6)

Fig 1 displays the various phases of the journey that patients with breast cancer go through; nevertheless, each woman will go through some or others, depending on their type of cancer.

Throughout the entire patient journey

Processes of loss and reinterpretation of the new circumstance . What stands out the most in the process these women go through during the diagnosis and treatment of breast cancer is loss; specifically, the loss of health and a reinterpretation of the new circumstance and the new bodily reality. In the most extreme cases, the loss of health emerges with the fear of death that many women report at the time of diagnosis or during treatment, due to the distress generated. The loss of identity seems to be related to the evolutionary (existential) moment in which the woman is; there are patients who report feelings of disability or loss of attractiveness, or fear of not being able to get pregnant in the future, especially the youngest.

I felt a terrifying fear and thought , “You have cancer you tell yourself , you’re going to die tomorrow .” (Patient 6) I feel like after the hysterectomy , as a woman , I no longer have anything , only the physical . Sure , I look great , but I tell myself that it’s just a shell , the shell I inhabit , because as a woman , I only have one breast left . (Patient 6) At that moment , I had to make the decision that I was no longer going to be a mother . (Patient 14)

Personal change . Most of the women report that with the diagnosis of breast cancer, their life stands still and from that point forward, a different journey begins. The sole focus on this journey is the disease and its implications. During all those months, the patients stop working; they focus on their medical treatments, and reflect a lot on their current situation and on life. Most of the participants state, especially those who have already been discharged, that they know themselves better now; they take better care of themselves, and they enjoy their day-to-day and the small moments more, making the most of their time, with more initiatives and fewer trivial complaints.

Clearly , you’re not the same person you were before; I don’t think she’ll ever come back; your mindset changes completely and I have sequelae from all the treatments . (Patient 1) I re-think wasting energy on lost causes; what’s more , I’ve also learnt to say no . If I’m not in the mood to go somewhere , I just say no . (Patient 7) I take much more advantage of the present now , because you realize that things can change on any given day . (Patient 3)

Trust and appreciation for their physician . Most of the interviewees stated that they fully trusted the doctors who care for them, without question or objection to the treatments proposed. They reported that, as they go forward, they discuss the tests and treatments that are going to be performed, as well as possible side effects. Several stated that they are unaware of the stage of their cancer; similarly, most also do not know the benefits expressed in X% of the treatments. A few of the participants claimed that they did talk in detail about the different types of treatments with their oncologists, that they had sought another opinion, and one of them even reported having decided to stop chemotherapy, which was very hard for her, given her physician’s insistence that she continue.

The truth is that the oncologist didn’t say much about percentages; what she told me were the steps that I had to take; I thoroughly trusted her and she gave me a lot of peace of mind . (Patient 5) I told him , “I’m going to do whatever you tell me to . ” It never occurred to me to dispute whatever the oncologist might tell me . I was willing to do whatever was needed . (Patient 8)

Most of the women, at some point during the interview, state that they are grateful for the care they received and that, within the seriousness of their situation, there is a treatment for their condition.

I am super grateful for the treatment I’ve received and with the doctors assigned to me . (Patient 2) I’m very lucky; I’m only on my second line of treatment for metastasis and I’ve got a lot more ahead of me , but I consider myself lucky and I believe things are going very well . (Patient 20)

Role of the woman . We can see that the women adopt a role of care-givers and managers of their surroundings. They worry about the disease negatively affecting the people around them, which is why they make an effort to manage the family’s activity for when they can’t do it and they try to avoid being a physical burden or cause emotional distress to the people around them.

I was very strong ; I made everything easy for people , but making it very easy , doesn’t mean that it was easy for me , but that I made it easy for everyone . (Patient 8) I didn’t want to worry anyone because that’s just the way I am , I push forward and that’s that . (Patient 5)

Support network . In all cases, the family appears to be one of the elements that is most involved in the disease process. Within the family, the partner deserves special mention. The testimonies in this regard reveal a wide spectrum of possibilities that range from the feeling of having had great support to a lack of attention and understanding that, in many situations, causes the relationship to be strained or to end. Friends tend to appear more occasionally.

I can’t complain about my husband; he was up to the challenge , very attentive toward me and he fully understood how I was feeling ; I felt very supported . (Patient 14) We’ve had a period of a lot of arguing; I’ve had to sit down with him and tell him that life had changed for me . (Patient 18) I had a partner I had lived with for five and a half years and he told me , literally , that he looked at me like a little sister , no longer as a woman , and he left me , and that hurt me tremendously . (Patient 6)

On the other hand, many patients commented on the importance of social media, where they have met people in the same situation as them. They report feeling understood and in good company; likewise, they commented on the importance of being able to share their doubts and get to know about other experiences.

It’s a situation that only someone who has gone through can understand; you can have all the good intentions in the world , but if you haven’t gone through it , you can’t even begin to understand . (Patient 8)

Use of complementary treatments . Most patients follow conventional medical treatment. However, many resort to other disciplines that help them improve their quality-of-life, like dietary changes, getting more exercise than usual, visits to a psychologist or physical therapist, or using other integrative therapies, such as acupuncture, yoga, reiki, flowers of Bach, homeopathy, cannabis, or meditation.

I started to read a whole bunch of books to see what I could do to take care of myself in terms of nutrition and exercise ; you consider everything you can do . (Patient 5)

Diagnosis/unmasking

This phase encompasses the time from when the woman detects some symptom or goes to a check-up until the medical diagnosis is made. For the woman, this is a time of a series of tests and results. We have observed that the procedures, especially the healthcare professionals that deal with the patients, and the timing vary, depending on the medical center where they are being cared for. Emotionally, this is one of the most complicated stages.

Emotional whirlwind . The wait to obtain test results has a huge emotional impact for the women, given that it is a time of great uncertainty and fear.

An entire month with all the anguish of finding out if you have something . (Patient 3) The worst part is waiting 15 days to find out the magnitude of the tragedy , if it’s throughout your entire body or only in your breast; you go through a brutal emotional whirlwind; the wait is horrible because there’s nothing else you can do , so that anguish that you carry inside is dreadful; it was hell for me . (Patient 10)

Additionally, the interviewees described many other emotions that included fear of death, fear of having no time, feeling of unreality, rage, anger, sadness, avoidance, denial…

The first thing I thought was that I was going to die and that I wouldn’t finish watching my children [grow up]; my father had died of lung cancer 25 years ago . (Patient 9) My only aim was to get back to normal , as if there were nothing wrong . (Patient 4) You have a lot of conflicting feelings; you wish this weren’t happening; you want to run away , but you say , “Where am I going to run to ? ” . (Patient 14)

Impact of medical communication . Several women comment that, when given the diagnosis, they dissociate because of the emotional impact and that they don’t listen to all the information that the medical professional is giving them.

I remember that she talked and talked , but I didn’t know what she was saying until she said , “Isabel , you’re going to be cured , okay ?”. (Patient 9)

During the diagnostic testing, the women are highly sensitive to the healthcare professionals’ words and gestures.

I looked at the face of the person who was doing the mammogram and that’s when I started to imagine the worst . (Patient 20) I say to them , “ But , is there a solution to this ? ” , and they say to me , “Don’t worry , I’m sure there is a solution . ” That “sure” is etched in my mind . (Patient 10)

Communication and managing their surroundings . After the diagnosis, the patients feel that they have to tell the people around them about their situation, especially those closest to them, the family. They all agree on how hard it is to share. Normally, the people it’s hardest to tell are their mother and their children. When they do, they try to put the most positive spin on it possible, in an attempt to keep them from worrying.

You no longer think only about yourself , you think , “Good grief , now I’ve got to tell my mother .” It’s hard . (Patient 16) I wanted to tell my kids the way I say things , always trying to look for the upside , and positive , although it was hard , but , anyway , in the end , it went well . When I finished , my husband told me , “You’ve convinced me that it’s no big deal .” (Patient 9) I told my son , “Son , don’t cry , your mom’s going to get over this , this is nothing .” (Patient 1)

During this period, the women contemplate how their situation will affect their surroundings and they try to organize it as much as possible.

I devoted myself to planning everything , to organizing what to do with my daughter , and to thinking about work , too , how I had left things at work . (Patient 4)

Surgery/cleaning out the cancer

Uncertainty and fear . The participants express that before going into surgery, they are told about the kind of procedure that will be done, but that, depending on what they find and the analysis, it may change. In light of this, they exhibit an enormous feeling of uncertainty and fear. In addition, many voice concern about how the surgery will go.

They tell you conservative surgery , but if we open up and see something we didn’t see on the tests , then everything could change . (Patient 10) Aside from the anesthesia , that I’m terrified of , you spend several hours in surgery and you don’t really know how things will go; when they clean it out , they analyze it , and you go into the operating room and you don’t know what can happen . (Patient 9)

Feeling of loss . Considering that the breast is associated with an intimate, feminine part [of their body], many women experience the operation as a loss. This loss is more acute if the operation is a mastectomy and there is no reconstruction at the same time. The loss also involves a loss of identity, compounded by the side effects of chemotherapy, such as hair loss. The interviewees who had undergone mastectomy say that following surgery, when the bandaging is removed and the scar is revealed, is one of the most critical moments, which is why they express difficulty in managing it and appreciate the caring assistance from the professionals.

It is identification with yourself , you know , it’s what you’ve seen in the mirror , what you think you’re like and , suddenly , you’re no longer like that; there’s an incredible personal crisis because you no longer recognize what you’re seeing . (Patient 11) I closed my eyes and I removed the bandaging and I didn’t dare look … with my eyes , I imagined the worst . (Patient 12)

Acceptance or demand for more aggressive intervention . The patients perceive the surgery as essential to recovering their health, which is why the process is widely accepted. Some patients who demand a more invasive intervention, normally a bilateral mastectomy, do so because that way, they feel safer with respect to a possible relapse, as well as more comfortable esthetically.

If they have to remove my breast , let them take it; what I want is to get better . (Patient 16) They say that I am in full remission , so they only removed the lump , but at first , I said that I wanted my whole [breast] removed ; then they assessed how to do it . (Patient 13) They told me that I had a genetic mutation and more possibilities of developing breast cancer and , since I felt such rejection toward my remaining breast , I decided to get rid of that one , too . (Patient 20)

Chemotherapy/loss of identity

The chemotherapy phase is one of the phases that affects the women’s lives the most, because of its physical impact and how long it lasts. No differences have been found in how they experience chemotherapy depending on whether it was neoadjuvant or adjuvant.

Negative impact of side effects . Chemotherapy is associated with many side effects that vary from one woman to another. Many indicate that they have suffered physical discomfort, such as fatigue, dysgeusia, pain, nausea and vomiting, mucositis, diarrhea, etc.

One day when I didn’t want to go to bed , I went to bed crying because I had the feeling that I wasn’t going to wake up . That day it was because I felt awful . (Patient 1)

Furthermore, all of the women suffer hair loss, which is one of the most-feared effects. Likewise, their body hair also falls out, especially on their face, and their weight fluctuates. All of these changes lead to a loss of identity that is experienced as taking away from their femininity. It must be remembered that oftentimes, chemotherapy is administered after surgery, further exacerbating this physical change. On top of all that, several women comment having to decide at the beginning of treatment whether to freeze their eggs or not; at that moment, many of them forfeit the possibility of becoming a mother or of becoming a mother again, which also adds to this loss of femininity.

Losing my hair was hard , but when it grew out again , I had an identity crisis . I didn’t recognize myself; people said I was really pretty like that , with my hair so short . I looked at myself in the mirror and I said that I’m not that woman , I can see that that woman is pretty , but it’s just that I don’t recognize myself . That’s not me or , it was like , I looked at myself and I didn’t recognize myself . That’s when I suffered a serious identity crisis , psychologically serious , but also serious because I sobbed because I looked at myself , but it wasn’t me . (Patient 6) Where’s that sexy lady , where is she ?, because you don’t feel good . I didn’t like myself at all . I was several sizes larger and I looked at myself and said , “What a monster . ” I didn’t feel good about myself . (Patient 1)

Many patients say that chemotherapy decreases their libido and dries up their mucous membranes, which is why they prefer not to have sex. For those who live as a couple, this situation can strain the relationship.

Sexually , I just didn’t feel like it , I wasn’t in the mood; not only did I not feel like it , my mucous membranes were dry and , what’s smore , I just couldn’t , I couldn’t , I felt bad for my husband , but he said , “Don’t worry .” (Patient 16)

Finally, some interviewees expressed a feeling of being poisoned by the treatment. These women tend to be highly focused on taking care of their body and have a very natural attitude toward life.

I had to really work my awareness that I was poisoning myself; at night I was at home and I thought that all that red liquid was circulating through my veins … I think I even had nightmares . (Patient 4)

Balance between caring for oneself and caring for others . The patients feel that it is time to take care of themselves, so they prioritize resting when they need it. Moreover, they worry about getting a haircut and, most of the times, they look for turbans and wigs. Some also learn how to put on make-up, which they rate as being very positive. On the other hand, those who have children or another person in their care, try to take care of them as much as they are able.

Around 11 : 00 , I no longer felt good , so I’d go to the armchair to rest and it’s like I had an angel , because I’d wake up a minute before I had to set the table and get lunch for my son who would be coming home from school . (Patient 1) While I was getting chemo , I went with the gadget and I told myself , “I’m going to teach you to apply make-up; for instance , your eyelashes are going to fall out . Make a line like this ” and at that moment when you look in the mirror , and we look like Fester in the Addams family . (Patient 13)

Vulnerability . The women experience great uncertainty and feelings of vulnerability the first times they receive chemotherapy, since they don’t know what side effects they will suffer.

With chemo , I started with a lot of fear and , later on , I became familiar with it little by little until the time comes when you go to the hospital like someone who’s going to pick up a bit of paper . (Patient 9)

In addition, those participants who join a social network or who are more closely tied to the hospital setting, know about the relapses and deaths of people around them diagnosed with breast cancer, which makes them feel highly vulnerable.

There are some people who leave the group because … it’s not like there are a lot of relapses and , geez , I think that it messes with your head . (Patient 13) We were almost always the same people at chemotherapy ; there was one guy who was really yellow who looked terrible and , there was one time when we stopped seeing him and another lady asked and the nurse said that he had died . (Patient 15)

At the same time, given the physical changes, especially those that have to do with body hair, many women feel observed when they leave home.

If I have to go out and take off my scarf because I’m hot or go straight out without any scarf on my head and whoever wants to look… let them ; I think that it’s up to us , the patients , to normalize the situation; unfortunately , there are more and more cases . (Patient 9)

Telling the kids . Since when the chemotherapy stage is going to entail many physical changes, the women look for ways to talk to their children about the treatment. Most of them comment that it is a complicated situation and all of them try to talk to their children in such a way as to protect them as much as possible.

I asked the nurse for help before I started chemotherapy to see if she had any pointers about how to talk about this with the kids and she recommended a story , but when I saw it , I didn’t like it … so , in the end , I decided to do it off the cuff . (Patient 10)

Radiotherapy/transition to normality

The “last” treatment . When the patient reaches radiotherapy, normally, they have already spent several months undergoing physically aggressive medical procedures, which is why they feel exhausted. There is a physical exhaustion resulting from the previous treatments and made worse by the radiation therapy. Furthermore, many women also report feeling emotionally drained by the entire process. However, this is generally accompanied by joy and relief because they feel that they are in the final stage of treatment.

Emotionally , it’s a marathon that has to end up at some point . (Patient 10) For me , radiotherapy was like a lull in the battle , with a winning mind-set . (Patient 4)

Comparison with chemotherapy . There is a widespread perception that radiotherapy has fewer side effects than chemotherapy, although later, when they receive it, several patients suffer discomfort, above all fatigue and dizziness. Several report that at this point, they are mentally worn out and just want to be done with the process, which is why they have less information than about chemotherapy.

I feel like radiotherapy is unknown , that you think it’s more “light ” and it turns out not to be so light . (Patient 13)

Follow-up care/the “new” day-to-day

Difficulty in getting back to normal . Once the patients are discharged, many feel that they need some time to recover, that it will be slow, in order to restore a more normalized pace of life. They are still working on their emotional and personal process.

When they tell you that you have cancer , they make it very clear : you have a goal; you have some months of chemo , some months of radio , and when you finish , you say , “And now , what do I do ?”. I say that because now I have to get back to my normal life , but I don’t feel normal . I still don’t feel cured , I’m not 100% . And you’re glad you’ve that you’ve finished it all and you’re alive , but at the same time , you say , “Gosh… this is very odd . ” It was a very strange feeling . (Patient 8)

Most patients report that their quality-of-life has diminished, due to the sequelae from the treatments. Lymphedema is one of the sequelae they name most often, although they also mention other symptoms, like digestive upset, weight issues, eye problems, scar pain, etc. The women who are on hormone therapy also suffer side effects, such as joint and muscle pain.

I have lymphedema and , although I have good mobility , I’m a little bit weak; when I go out for dinner , I generally order fish , because I can’t always cut meat well . (Patient 6)

Several interviewees also express difficulty in their affective-sexual relations. Many of them feel insecure because of all the physical changes; others have sequelae that hinder their relations, and still others are suffering symptoms of early menopause. This can cause problems in the couple and for those who don’t have a partner, suffer many complications when it comes to meeting other people.

I haven’t had sex with my husband for 2 years because , it’s also really complicated to get over; I’ve gone for pelvic physical therapy; I’ve used gels , but nothing works . (Patient 8) It’s taken me many months for me to have a relationship again; it’s been really hard because , even though everyone told me that I looked fine , I didn’t feel fine . My breast cancer had taken away all my attributes as a woman . (Patient 6)

Some women also experience difficulties when it comes to returning to work. Several state that they had been fired when they went back. They also report that when interviewing for a job, it’s complicated for them because they have to explain what happened and they mention the schedule of doctor’s visits that they have. Other women comment that they’ve been given early retirement or disability.

You go to the interview and if you tell them that you’ve had the disease , they look at you like you’re a weirdo . (Patient 13)

Breast reconstruction . How reconstruction is experienced, as well as its timing, are highly contingent upon they type of reconstruction. Each one has its pros and cons, but the opinions collected with respect to the type of reconstruction have been positive.

Although it took 18 months for the entire process to be over , I’m delighted with reconstruction with the expander . (Patient 16)

Some patients state that after the whole process, which has been long and complicated, they prefer not to undergo reconstruction immediately. In these cases, they report having felt a subtle pressure from the outside to undergo reconstruction.

Every time I went for my check-ups , they said , “You’re the only one left [who hasn’t undergone reconstruction]” and in the end , the truth is that I’m really happy because I think I look pretty . (Patient 12)

Check-ups and fear of relapse . Check-ups are one of the times that generate most worry and insecurity. The women remark that, starting a few days before and until they receive the results of the follow-up studies, they are more anxious about the possibility of relapse.

At every check-up my legs start shaking again and my stomach is in knots, although at my last one, everything turned out okay and I’m thrilled. (Patient 6) During the first stage , I did everything I had to do and I got over it , but it’s a lottery . You can do whatever you want , but it’s the luck of the draw and when you start going for check-ups , it’s like going to play Russian roulette . (Patient 8)

Maintenance hormone therapy . Hormone therapy is understood differently depending on age and on the major decision of whether or not to be a mother or to have another child. If the woman does not want to have more children, the treatment is accepted better. The patients who take it also report effects derived from menopause, for instance, joint pain or dry mucous membranes.

I did notice joint pain , but since I exercised , [I felt it] much less than my fellow women , although , for instance , when it comes to getting up from a chair , you get up like an old lady . (Patient 10)

Position of support . Several patients mention that, after discharge, they stay active on social media, they volunteer when they find out about someone or to participate in activities related to breast cancer, with the aim of being able to help other people who are in this situation.

It’s really good to meet other people who are going through the same thing , so , now that I’ve finished , I like it and I always help whenever I can , because I can share what was good for me . (Patient 13)

Relapse/starting over

Emotional impact . The diagnosis of a relapse is experienced much the same as the initial diagnosis. All of the women report fear, although they also state that they are more familiar with the processes. Other emotions emerge, such as why me, blame, disbelief, etc.

Since they had told me that it wasn’t going to happen again , I believed it , of course , I wanted to believe it and it totally surprised me; I couldn’t stop crying and crying . (Patient 17)

Telling the family again . Patients repeat that telling the family about it again, especially the children and parents, is tough and they try to minimize it in an attempt to protect them emotionally.

On the very same day that I had my mammogram , my mother says that she wants to come a see the kids . We’re in the park , when she arrives , I have to tell her that everything’s fine and when we get home , I tell her everything . My mother’s devastated again and I tell her not to worry , that everything is going to be fine . (Patient 16)

Thinking about whether something could have been done differently . Several women comment that, after their relapse, they think about whether the treatment was enough or there must have been something they could have done to avoid the relapse.

You get furious , because you say , “I wasn’t supposed to get sick , because if , 2 years ago when the first microcalcifications appeared I had had them removed , then I wouldn’t have metastasis , or maybe I would . (Patient 19)

Metastatic breast cancer/time-limited chronic

Re-interpreting the concept of metastasis . Most of the participants in this stage state that they have had to give new meaning to the word, “metastasis,” since their first perception was directly related to death. In this way, they come to understand that cancer can become chronic, although they now have to take medication and go to the hospital on a regular basis. Nevertheless, they know that their life expectancy may be a few years. The women who are involved in a group point out how hard it is to see their fellow member pass away.

What I now call my “ new normal” consists of lots of visits to the hospital and never going back to work . (Patient18)

They also state that at this stage, they do not identify with the disease generally known socially as “breast cancer”, where there is great emphasis placed on early detection and on their chances of being cured. This causes them to feel more isolated.

These pink ribbon campaigns hurt us because they tend to underscore that everything is going to turn out fine because breast cancer has a very high cure rate; there is huge lack of awareness . (Patient 20)

Physical and emotional discomfort . Most of the women in this stage report side effects from the treatments, although some comment that good quality-of-life can be preserved. On an emotional level, they say that they sometimes feel a certain agony due to not knowing how much longer the treatment will be effective. They live in a state of uncertainty that they try to cope with by focusing on their day-to-day and experience the good times deeply.

When I’m not in pain , I try not to even remember what I have and go out and have fun with my family and live . (Patient 20)

Several women who have children express with regret that they worry about their children enjoying them and remembering them when they were well. They are sad that they won’t be able to grow up in a normal family. Some also comment the impact this diagnosis is having on their partner.

What I don’t want is for them to carry this baggage of having a sick mother . (Patient 18)

A conflict with disability also appears, as many women report their desire to continue working, but feel that they can’t keep up with the pace of work. Additionally, several state that going through the medical board is a strenuous process, given that they look good physically.

It’s hard to deal with , I’m a non-practicing lawyer and I have degrees galore , but I worked the first year and I couldn’t continue . (Patient 21) Every year they call me again for the disability monitoring and they always threaten me . To be honest , the treatment doesn’t make me sick , but I don’t know how long it’s going to be like this . (Patient 19)

Social invisibility . The participants say that they do not have any physical signs of being ill, that they look fine, although they know and feel that inside, they are not well. They say that it is sometimes hard to manage socially, since on occasion, they feel misunderstood and disparaged.

I’m much sicker now , but people think or want to think that I’m fine . When I was doing chemo , it was like wearing a sign that said “cancer . ” (Patient 17)

This study describes the patient journey of women with breast cancer, specifying the different phases with the most relevant aspects of each, as well as the different cross-sectional features they report throughout the entire treatment process.

The results portray breast cancer as a process in which there is a striking feeling of loss of health and self-identity, changes in routines, personal and employment transformation, as well as emotional hardship during and after breast cancer treatment, aspects that are also reported in the literature [ 41 , 42 ]. Earlier studies state that experiencing cancer is highly stressful. It involves a major threat to life or physical integrity, in addition to mental health, interfering with the path, projects, and plans patients have for their life over the short, medium, and, on occasion, long term as well [ 6 ]. Along with reporting adverse physical and psychological impacts, patients also report positive ways in which they have grown psychologically or emotionally from the experience [ 7 , 42 ]. The diagnosis of breast cancer not only impacts the women individually, but also affects their surroundings. As reported in the literature, despite going through a very challenging time, the women struggle to put on a positive face and attempt to conserve the family’s well-being, specifically that of their children [ 7 ]. At the same time, the family is a fundamental source of support and usually provide indispensable support; however, it is not always effective, because family members do not fully understand the stresses involved in living with cancer [ 43 ]. Previous studies also reveal that for some women, their partners are one of their most significant supports; nonetheless, research also suggests that a cancer diagnosis predicts marital breakup more strongly for female survivors than males [ 44 ]. Our results reflect that the women frequently resort to other women in the same situation, possibly because they face significant unmet supportive care needs [ 30 ]. The need for social support may lead patients to seek social support groups consisting of people who are experiencing similar health crises, because such groups allow them to interact with those who best understand their suffering [ 43 ]. Another aspect that appears across the board is the relationship the participants have with the medical team. In this study, we have noted their trust in the medical team and acceptance of the treatments proposed without going into the clinical data of the disease and without needing to know the benefit provided by the treatment. Cancer patients are confronted with a potentially life-threatening [condition], feeling vulnerable, and need to rely heavily on their care providers, expecting the physician to act in their best interests [ 5 ]. Therefore, they need to have a close relationship, as well as comprehensive care [ 30 ]. Patients’ trust in a physician has been associated with a reduction of their fears and anxiety and [increased] satisfaction and adherence to treatment [ 5 , 30 ]. We believe that it would be important to provide patients with accurate information, so as to avoid misunderstandings (such as cancer being synonymous with death, regardless of stage) as several participants in this study have reported, which can lead them to believe that the risk of relapse with and without chemotherapy is much greater than the oncologists estimate [ 45 ]. We believe that in future studies that it would be worthwhile to examine the peculiarities of each kind of patient information with the aim of determining how to break it up and make it both comprehensible and tolerable to promote patients’ well-being.

A breast cancer diagnosis is generally unexpected and practically all patients suffer psychological distress, such as feelings of uncertainty, disbelief, hopelessness, vulnerability, anger, fear, anxiety, and sadness [ 46 , 47 ]. The literature has reported that many women experience peritraumatic distress or dissociation during the medical conversation in which they are given their diagnosis of cancer [ 48 ], which might account for the reactions of the respondents. Given that, when they receive their diagnosis, additional information is generally given to them, such as clinical aspects and preferred treatments. Repeating this information at subsequent appointments could contribute to improving communication with patient, since several participants stated that they found it hard to pay attention to the physician, given the emotional impact. Additionally, breast cancer patients tend to be diagnosed when they are relatively young, and often when they are in the middle furthering their career or raising children [ 12 ]. In spite of everything, the women try to put on as brave a face as they can and focus on maintaining their children’s well-being [ 7 ]. Telling children about their diagnosis is reportedly one of the biggest challenges; parents are usually unsure of how to tell them, because at the same time that they want it to be open and honest and cover their children’s developmental needs, they also want to protect them children [ 49 ].

Once diagnosed, breast cancer patients go through different treatments. The most salient experiences of these phases pertain to the impact of side effects on physical quality-of-life and psychological well-being, which is consistent with the literature [ 11 ]. Moreover, cancer therapy entails physical changes that affect their feminine identity, fertility, self-esteem, sexual functioning, and makes them more vulnerable [ 10 , 50 ]. Women described their inner self as being on an emotional rollercoaster with highs and lows throughout the various phases of treatment [ 7 ]. Given treatment side effects and sequelae, these women are more likely to experience physical symptoms and psychological disorders than patients with other kinds of tumors [ 51 ]. The side effects involve an acute sense of loss of health and quality-of-life, as well as identity and femininity. It would be interesting for future research to explore the therapies used in grief counseling with cancer patients, as understanding and exploring this perspective could comprise an additional clinical aid.

Once the women have completed their treatments, they gradually get back to normal and many contemplate returning to work. However, in line with our results, the literature reveals that even though they want to normalize their lives, female breast cancer survivors feel that they will never return to their baseline status [ 7 ]. A significant number of patients experience difficulties in physical, cognitive, and emotional functioning after their treatment, such as symptoms like lymphedema, fatigue, pain, sleep disorders, cancer-related cognitive impairment, emotional stress, symptoms of depression and anxiety, problems with relationships, reduced sexual identity, fertility problems, and fear of cancer relapse [ 13 , 14 ]. Furthermore, patients with hormone therapy suffer hot flashes, sweats, joint pain, weight gain, decreased libido, and low energy [ 52 ]. A sizeable number of these women also experience changes in employment status which can happen even 5–10 years following diagnosis [ 15 ]. Given that all these changes alter the structure of the woman’s everyday life, personalized care and treatment plans in cancer survivors are highlighted in the literature with extended specialized support being proposed that enables them to make a better psychosocially adjusted transition from treatment to follow-up [ 53 ] and advocating for the patient’s participation in all decisions that affect her during this period [ 54 ]. Further research is needed concerning how to structure the follow-up and support offered to these women during this stage so as to meet their needs and help them adjust to their new reality with the chronic sequelae caused by cancer and its treatment. On the other hand, the personal transformation of the initial stages of the journey are best seen during this phase. The literature shows that women who have had breast cancer report changes in their philosophy of life, such as embarking on a new life path, changing their priorities in life, as well as valuing life in general [ 42 ]. Most of the participants in our study place special emphasis on appreciating life, enjoying it more, and living each day to the fullest. Cancer survivors report being aware of how precarious life is, while also feeling the joy of being alive [ 55 ]. Similarly, they have been found to be more resilient and better able to repair their mood than healthy women [ 56 ].

About 5% of all patients with breast cancer are diagnosed when the disease is metastatic, whereas some 30% have suffered a relapse of an early breast cancer [ 17 ]. We saw that some women suffering a relapse after initial treatment with curative intent tend to wonder if the treatment was sufficient or if they should have done something more to prevent the relapse. Metastatic breast cancer is uncurable, which is why these women’s main psychosocial challenges are not the same as those who are diagnosed in early stages [ 18 ]. Faced with incurability, the women react with shock and fear of imminent death, but this anxiety diminishes once they begin treatment and learn that there are more treatment options [ 17 ]. During this phase, the interviewees reported impaired physical QoL and functioning, being hindered by pain, fatigue, or menopausal symptoms. Emotionally, they report suffering bouts of depression and anxiety, as well as fear because of the spread of their cancer. As for their relational QoL, their children’s welfare is their number one concern, especially for mothers of young children [ 17 , 57 ]. What’s more, these women felt isolated from society in general and, more specifically, from the non-advanced breast cancer community, inasmuch as they feel that nobody understands what they are going through [ 18 ]. A psychosocial approach is especially important in this phase to help these women to continuously adapt to the changes of their individual clinical situation and to the progression of the disease, thereby improving their coping.

Clinical implications

Having first-person information enables us to comprehend in detail the experiences of breast cancer patients, their situation, and emotional state, which favors holistic cancer care for health professionals.

Healthcare professionals should prepare women for a changed life situation, as well as to face prolonged, multimodal treatment (surgery, chemotherapy, hormone therapy, radiotherapy), and to confront physical and psychological sequelae, as well as the fear surrounding an uncertain prognosis. It is important to help them manage their expectations and fears and, to identify and address the issues and concerns that arise at different time points during treatment. The information and support offered should be adjusted to each woman’s individual needs, her life situation, her coping style, and the time and stage of their cancer. This more empathic, understanding outlook can also contribute to improving the physician-patient rapport, promoting communication, understanding, and shared decision-making.

Finally, a comprehensive understanding of the women’s psychosocial support endorses their belonging to groups of women with breast cancer, in which there is a relationship among equals. Further research is needed to specify the type needed so as to decrease both the impact of the death of women in the group, as well as the vast amount of information that they may end up obtaining, without needing it or requesting it.

Limitations

This study was performed with Spanish participants, which is why certain aspects cannot reflect the experiences of breast cancer patients from other countries, given the particularities of both the Spanish healthcare system and Spanish culture. Likewise, the data attained were specific to women with breast cancer, which can scarcely be extrapolated to individuals with other cancers. Moreover, the findings do not reflect men’s experiences with breast cancer and research with this group would enrich the field further. In addition, the age of our participants ranged from 34 to 61 years; hence the results should be interpreted for a middle-aged population and do not reflect the experiences of women diagnosed at very early or very old ages. Finally, we believe that there may be a bias regarding the women who agree to participate, as this group has probably accepted their condition more, as well as having worked on it more.

Despite these limitations, we hope that our findings can contribute to better understanding the experiences of women with breast cancer.

Acknowledgments

The authors are grateful to the investigators of the Neoetic study and the Bioetic Group of the Spanish Society of Medical Oncology (SEOM) for their contribution to this study. We would like to thank all the women who generously shared their experiences with us, the support of HealthyOnco ( www.healthyonco.com ), and Priscilla Chase Duran for editing and translating the manuscript.

Funding Statement

This work was funded by the Spanish Society of Medical Oncology (SEOM) in 2018. The sponsor of this research has not participated in the design of research, in writing the report, or in the decision to submit the article for publication.

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• Volume 10, Issue 3
• Breast cancer nursing interventions and clinical effectiveness: a systematic review
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• http://orcid.org/0000-0003-0248-7046 Raymond Javan Chan 1 , 2 ,
• Laisa Teleni 2 ,
• Suzanne McDonald 2 ,
• Jaimon Kelly 3 ,
• Jane Mahony 4 ,
• Kerryn Ernst 4 ,
• Kerry Patford 4 ,
• James Townsend 4 ,
• Manisha Singh 4 and
• Patsy Yates 2
• 1 Division of Cancer Services , Princess Alexandra Hospital, Metro South Health , Woolloongabba , Queensland , Australia
• 2 School of Nursing and Cancer and Palliative Care Outcomes Centre , Queensland University of Technology , Brisbane , Queensland , Australia
• 3 School of Medicine , Griffith University , Brisbane , Queensland , Australia
• 4 McGrath Foundation , North Sydney , New South Wales , Australia
• Correspondence to Professor Raymond Javan Chan, Division of cancer Services, Princess Alexandra Hospital, Woolloongabba, QLD 4029, Australia; Raymond.Chan{at}qut.edu.au

Objectives To examine the effects of nurse-led interventions on the health-related quality of life, symptom burden and self-management/behavioural outcomes in women with breast cancer.

Methods Cochrane Controlled Register of Trials (CENTRAL), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline and Embase databases were searched (January 1999 to May 2019) to identify randomised controlled trials (RCTs) and controlled before-and-after studies of interventions delivered by nurses with oncology experience for women with breast cancer. Risk of bias was evaluated using the revised Cochrane risk-of-bias tool for randomised trials . Intervention effects were synthesised by cancer trajectory using The Omaha System Intervention Classification Scheme .

Results Thirty-one RCTs (4651 participants) were included. All studies were at risk of bias mainly due to inherent limitations such as lack of blinding and self-report data. Most studies (71%; n=22) reported at least one superior intervention effect. There were no differences in all outcomes between those who receive nurse-led surveillance care versus those who received physical led or usual discharge care. Compared with control interventions, there were superior teaching, guidance and counselling (63%) and case management (100%) intervention effects on symptom burden during treatment and survivorship. Effects of these interventions on health-related quality of life and symptom self-management/behavioural outcomes were inconsistent.

Discussion There is consistent evidence from RCTs that nurse-led surveillance interventions are as safe and effective as physician-led care and strong evidence that nurse-led teaching, guidance and counselling and case management interventions are effective for symptom management. Future studies should ensure the incorporation of health-related quality of life and self-management/behavioural outcomes and consider well-designed attentional placebo controls to blind participants for self-report outcomes.

Protocol registration The International Prospective Register of Systematic Reviews (PROSPERO): CRD42020134914).

• quality of life
• survivorship
• symptoms and symptom management

https://doi.org/10.1136/bmjspcare-2019-002120

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Breast care nurses (BCNs) are a specialist workforce to support people with breast cancer through their disease experience, predominantly in well-resourced healthcare systems. 1 BCNs were initially introduced into the health systems in the UK, Australia, USA and parts of Europe over the last three decades to facilitate continuity of care and psychosocial support. 2 3 Yates et al defined the BCN as ‘a registered nurse who applies advanced knowledge of the health needs, preferences and circumstances of women with breast cancer to optimise the individual’s health and well-being at various phases across the continuum of care, including diagnosis, treatment, rehabilitation, follow-up and palliative care’. 4

As early as the introduction of BCNs, there was a recognition that the model of care for BCNs should be informed by the best available evidence. 2 5 At the early stage of implementation, there were a few randomised controlled trials (RCTs) 6–10 providing direct evidence to inform the model of care. 5 In addition to the evidence from these RCTs, the model was also informed by evidence-based recommendations, relevant management guidelines and training curricula available at the time. 2 3

Over the past 20 years, there have been significant changes in the landscape of breast cancer treatment. People with a breast cancer diagnosis are now living longer, especially among those with early stage disease. In developed countries, the overall 5-year relative survival rate is approximately 90% in the USA, UK and Australia. 11 A 2008 Cochrane review of five randomised studies examined the effects of supportive care provided by specialist BCNs, three of which tested psychosocial interventions during diagnosis and early treatment and one study each that tested supportive care during radiotherapy and post-treatment follow-up interventions. 1 The review concluded that there was limited evidence to inform BCNs’ model of care. 1 Over the past 10 years, the literature has grown enormously. A recent scoping review conducted by Charalambous et al 12 identified 214 RCT, quasi-RCT and controlled before-and-after (CBA) studies assessing the impacts of nurse-led interventions offered to patients with any cancer diagnosis. 12 However, this review did not use systematic review methods and was not breast cancer specific. Therefore, the findings were not directly relevant for understanding the BCN’s role in supporting patients with breast cancer. A systematic review of the current literature examining the effects of nurse-led interventions for people with breast cancer is warranted, to inform the evolution of the BCN model within Australia and internationally.

This was a systematic review of RCTs and high-quality CBA studies (study designs as defined by the Cochrane Effective Practice Organisation of Care) 13 that examined the effects of interventions provided by specialist cancer nurses to patients with breast cancer. This review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement 14 (protocol registration: The International Prospective Register of Systematic Reviews (PROSPERO): CRD42020134914).

Search strategy

A complete list of searches is listed in online supplementary A . The search terms were devised by the study authors. Cochrane CENTRAL, CINAHL, Medline and Embase databases were searched up to May 2019. The search strategy was adapted for use with each bibliographic database and included Medical Subject Headings (MeSH) terms, where available, and keywords relating to the population (breast care/cancer nurses) and any structured interventions (eg, nurse-led services, psychoeducational programmes, cognitive–behavioural therapies and symptom management programmes). The search was limited to English articles published in the past 20 years (1999–2019) to account for significant changes in treatment and patient experiences that have occurred over the past 20 years due to the advances in treatment options and increased expectation of the specialist cancer nurse role. Reference lists of relevant articles were hand searched, and authors of any included articles were searched for additional articles.

Supplemental material

Selection criteria.

Studies were included where: (1) interventionists were nurses with experience in oncology; (2) the effects of interventions delivered by these nurses could be isolated and evaluated against a comparison group (ie, usual care or other control); (3) the population was patients with breast cancer (and their family members) or the healthcare system. Studies of patients with mixed cancer diagnoses were only included if ≥80% of the study sample comprised patients with breast cancer or where the results for patients with breast cancer were reported separately. Studies that focused on family members and excluded patients, or studies where the effects of the nurse interventionist could not be separated from other interventionists, were excluded. Outcomes of interest were guided by a systematic review examining the effects of nurse-led services in chronic disease management. 15 These included any valid measures of patient-reported outcomes (ie, health-related quality of life (HRQoL), symptom burden, self-management and behaviour), survival and measures of patient and/or family member satisfaction or perception of the quality of care, service delivery and healthcare professional satisfaction.

Data collection

Records identified by the search strategy were imported into Endnote and duplicates were removed. Titles and abstracts of records were independently screened for relevance by two reviewers (SM and LT). Full reports of all potentially relevant trials were then retrieved independently assessed for eligibility based on the inclusion criteria by two reviewers (LT and SM). Disagreements were resolved in consultation between the two reviewers, or with a third reviewer (RC) where consensus could not be reached. Reference lists of articles were screened for additional potentially relevant references.

A standardised data extraction template was piloted for use with three studies and refined before extracting data from the remaining included studies. Data extracted included study design, aim of the study, setting or nature of healthcare service, location, characteristics of the nurse interventionists, key components of the intervention (dose, administration and content), length of the study, outcome measures, data collection methods, reported results (specific to the primary and secondary outcomes), reported conclusions, strengths and limitations. Data were extracted by one reviewer (LT) and cross checked for accuracy by a second reviewer (SM).

Data synthesis

Outcomes were not pooled as the outcomes were not considered comparable across trials. Given the clinical heterogeneity across the studies with a number of different study populations (pre, during and post various treatment types, and survivorship), a narrative approach to synthesis was used. Mean difference for continuous data or ORs for categorical data and 95% CIs were calculated between intervention and control groups at the study endpoint where authors reported significant findings ( online supplementary table 2 ). All studies were categorised by stage of cancer trajectory in which the intervention was delivered (ie, diagnosis, treatment, survivorship, end of life) and intervention and problem classification schemes using the Omaha System 16 with additional descriptors provided by Charalambous et al 12 to guide decisions. The Omaha System 16 provides a taxonomy for classifying interventions and categorising problems addressed by these interventions. In addition to the guidance provided by the scheme, we categorised interventions into the four categories ( treatments and procedures, case management, surveillance, and teaching, guidance and counselling ). The Omaha System 16 categorises problems into four domains: environmental (ie, material resource, physical surroundings), psychosocial (ie, behaviour, emotion, communication and relationships), physiological (ie, functions and processes that maintain life) and health-related behaviours (ie, patterns of activity that maintain wellness, recovery or decrease risk of disease).

Risk of bias

Risk of bias was assessed using the revised Cochrane risk-of-bias tool for randomised trials (RoB 2, Version 15 March 2019), 17 which evaluates risk of bias arising from the following five domains: (1) randomisation process; (2) deviations from the intended interventions; (3) missing outcome data; (4) measurement of the outcome and (5) selection of the reported result. Each domain was assigned a risk of bias (low risk, some concerns or high risk) based on the domain algorithm and an overall judgement (low risk, some concerns or high risk) was made using the described criteria. Two reviewers independently assessed the risk of bias for each included study (SM and JK). Disagreements were resolved by a third reviewer (LT).

Overview of included studies

A total of 39 articles reporting 31 RCTs (4651 participants, range 18–408) and no CBA studies were included in this review ( figure 1 ) from the initial search, with no new articles identified from the snowball search. Characteristics of included studies and interventions are summarised in online supplementary table 1 and the results of included studies are summarised in online supplementary table 2 . Studies were predominantly conducted in the USA (n=10), UK (n=4), Australia (n=3) and Sweden (n=3). The aims of studies were to establish the effectiveness, 18–44 pilot test the feasibility or acceptability, 45–49 and/or to conduct an economic evaluation 50–53 of the intervention(s).

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Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram showing the selection of studies. BC, breast cancer; RCT, randomised controlled trial.

Interventionist experience, qualifications and training

All included studies indicated that the nurse interventionist(s) had experience in cancer care with 10 studies reporting specific experience in breast cancer care ( online supplementary table 1 ). Five studies reported the actual or minimum required years of experience in cancer care and/or breast cancer care (range 3–20 years). 34 38 43 44 46 Nurse interventionist qualifications were described in four studies, two included masters-prepared nurses, 36 46 one described the interventionist requirements as high diploma degree in nursing or higher degree 44 and one interventionist was the primary author whose qualifications were listed as RN and PhD. 41 Sixteen studies described interventionist training. 19 23–25 27–31 33 34 36 40 43 47 Training content included administering and adhering to the intervention and/or research protocols, human research ethics and evidence-based practice updates. Trainer expertise was described in two studies 23 25 (ie, specialist nurses, oncologists clinical psychologist) and five studies described training duration (range 8 hours to 12 months). 19 25 33 34 43

The risk of bias in each study is outlined in table 1 . All studies were judged to be at high overall risk of bias for at least one outcome. Across all studies, the lowest risk of bias was in the randomisation process. The domains with the highest risk of bias across all studies were measurement of the outcome, missing outcome data and deviations from interventions. The largest contributors to risk of bias was lack of information about missing data and its potential impact on the true value of the outcome and the impact of the lack of blinding on self-report outcomes.

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Risk-of-bias judgements of included studies

Intervention effects

A heat map of intervention effects by Omaha intervention category and cancer trajectory is summarised in table 2 . Twenty-two studies (71%) reported at least one superior nurse-led intervention effect ( table 2 ). Of the studies that reported superior nurse-led intervention effects on HRQoL (32%) and that measured secondary outcomes, all had at least 1 and 83% had at least 2 superior effects on secondary outcomes ( online supplementary tables 3–9 ). Eighteen RCTs were conducted during treatment, 12 during survivorship and 1 conducted from diagnosis to survivorship. Problem domains were psychosocial (n=10), health-related behaviours (n=8) or a combination of both (n=12) with one study also including physiological . Most of the study interventions were categorised as teaching, guidance and counselling (n=19; 2569 participants). All teaching, guidance and counselling interventions were structured and delivered by at least one (range: 1–7) oncology nurse. These interventions were mostly delivered individually with the exception of two group education interventions (254 total participants). 31 39 Five study interventions were categorised as case management (606 participants) and compared with usual care. Three interventions were unstructured, requiring patient-initiated contact 20 40 48 and two were structured 44 46 interventions delivered face-to-face, by telephone and/or online by an experienced oncology nurse. In addition to case management, two interventions included counselling and education. Seven study interventions were categorised as surveillance (1476 participants). These interventions replaced usual follow-up care with nurse-led follow-up care with the exception of Wells et al 50 who replaced usual hospital postoperative discharge with nurse-led early discharge. Surveillance interventions were predominantly delivered by telephone (n=6) and unstructured (n=4) requiring patient-initiated contact with a BCN or other experienced oncology nurse. There were no treatment and procedure interventions.

The distribution of intervention effects by Omaha system intervention category on all health-related outcomes across the cancer trajectory

During treatment

The most tested interventions during treatment were teaching, guidance and counselling (n=15; 1987 participants). Of these, three tested interventions in addition to usual care and compared with a usual care 18 42 or other non-descript control 38 and 12 lacked sufficient information to judge whether usual care was part of the intervention arm(s). Of these 12 RCTs, 6 were compared with usual care, 19 23 25 27 39 47 5 compared with attentional controls or other interventions 24 28–30 43 and 1 did not describe the control condition. 21 No intervention was inferior to control for any outcome and 67% (n=10) were superior in at least one outcome. Superior intervention effects were most common for symptom resolution or overall burden (n=8, 67%). Superior effects were also reported in 60% (n=4) of the studies that measured self-management/behavioural outcomes and 33% (n=4) of the studies that measured HRQoL. One RCT that compared cognitive–behavioural therapy delivered by a nurse versus cognitive–behavioural therapy delivered by a psychologist versus usual care reported greater patient satisfaction in the intervention groups, with greater perceived benefits from the nurse-led intervention. 26 Moreover, this study reported that usual care incurred higher hospitalisation and total healthcare costs. 54

Case management intervention studies evaluated in 2 studies of 300 participants collectively were compared with usual care. In one study, the intervention was delivered in addition to usual care 44 while the other study was unclear. 40 Both studies reported superior effects on symptom burden outcomes, equivocal effects on self-management/behavioural outcomes and one study reported equivocal effects on HRQoL. One RCT evaluated health service/resource use and costs throughout four or six cycles of chemotherapy. 44 53 In those undergoing four cycles of chemotherapy, intervention participants incurred a higher per patient cost with an equivocal quality-adjusted life years (QALYs) compared with usual care. In comparison, those undergoing six cycles, intervention participants incurred lower per patient costs and fewer emergency department visits, but fewer QALYs compared with usual care.

One surveillance intervention study (108 participants) 50 compared early nurse-led postoperative discharge with usual hospital discharge. Wells et al 50 reported equivocal effects of the early nurse-led discharge for HRQoL, symptom burden and self-management/behavioural outcomes. However, nurse-led postoperative early discharge saved 2.26 bed days per patient and was associated with a reduction in cancellations of 2.9 per month and subsequent cost savings. Moreover, Wells et al 50 reported that significantly more interventions participants would opt for the same care again.

During survivorship

The most tested interventions during survivorship were surveillance (n=6, 1368 participants), all of which compared nurse-led follow-up care (including annual mammography) with usual physician-led follow-up care. Four surveillance interventions relied on patient-initiated contacts and were delivered via telephone 22 34 49 or combined telephone/face to face 51 and two mimicked usual physician follow-up care as per study site. Irrespective of the mode or structure of follow-up care, nurse-led intervention effects were equivocal to physician-led care for HRQoL (n=4), symptom burden (n=6), self-management/behavioural outcomes (n=1) and 5-year time to all-cause death (n=1; table 1 ). Moreover, of the three studies that measured patient satisfaction with care, only Beaver et al 33 found significantly greater patient satisfaction in the nurse-led intervention arm compared with usual care. In terms of health service/resource use and costs, Koinberg et al 51 reported that fewer visits to the physician resulted in lower per patient cost. Similarly, Kimman et al 36 compared nurse led with usual follow-up care with and without a group education programme and reported that nurse-led follow-up care combined with the exercise education was the most cost effective in terms of QALYs.

There were four teaching, guidance and counselling interventions (582 participants). Although most studies reported significant improvements in symptom burden (three of four studies) and self-management/behaviour (two of three studies), only two of four studies reported improvements in HRQoL, one of which was not sustained at final follow-up of 16 weeks ( table 1 ). Three studies aimed to improve symptoms using counselling and exercise, 31 cognitive–behavioural therapy 41 or psychoeducation 45 and one tested the effect of a nurse-developed survivorship care plan in conjunction with general practitioner (GP)-led care. 37 Only one study 37 measured patient satisfaction with care, reporting that satisfaction with coordination and continuity of care was equivocal between those under GP-led follow-up care with and without a nurse-developed supportive care plan.

There were two case management interventions (95 participants). Mertz et al 48 replaced usual rehabilitation care with nurse-led follow-up and counselling and reported significant improvements in symptom burden (ie, distress, anxiety, depression) and satisfaction with treatment and rehabilitation, but no difference in HRQoL. Kim et al 46 conducted a telephone-based diet and exercise interventions matched to the patient’s stage of change. Compared with usual care, there were significantly greater improvements in symptom burden, stages of change and emotional functioning. However, the intervention had equivocal effects on all other HRQoL measures, anxiety and physical activity compared with usual care.

Diagnosis to survivorship

One study was conducted from diagnosis through to survivorship, testing a 2-year nurse-led case management intervention (211 participants) compared with usual care. 20 The nurse-led case management had superior effects on disease-specific HRQoL, but only for unmarried women at 1 month; otherwise, the effects were equivocal to usual care over 12 months for the unmarried subgroup and entire participant. Improvements in mood disturbance were greater in the intervention arm at 1 and 3 months, but this difference was only sustained to 6 months in women with no family history of breast cancer. There was no difference in costs between nurse-led intervention and usual care, and most (75%) of the intervention nurse-related costs and time was attributable to the first 6 months of the intervention. Patient satisfaction was not investigated in this study.

To the best of our knowledge, this is the largest systematic review examining high-level evidence of the effectiveness of interventions delivered by nurses with experience in oncology for patients across the postdiagnosis breast cancer trajectory, including 31 original research studies of 4651 participants. While several reviews of nurse-led interventions in cancer exist in the literature, 1 55–58 this review focusses on interventions delivered to patients with breast cancer by nurses with oncology experience or expertise for relevant outcomes guided by taxonomy developed by Chan et al . 15 Using the Omaha intervention categorisation system, 16 we identified three intervention categories implemented during breast cancer treatment and survivorship or over the entire breast cancer trajectory. Compared to the 2008 Cochrane review, 1 our review not only provides inclusion of new studies published over the past 12 years, it also has a wider inclusion of studies that are delivered by any nurses with oncology experience, as opposed to only those with a specialist title of BCNs.

The most tested intervention was teaching, guidance and counselling in this review. This finding is consistent with Charalambous et al 12 scoping review that reported teaching, guidance and counselling interventions are most tested in both breast cancer and during treatment in any cancer. However, Charalambous’s review had a wide focus including all cancer types and did not specifically report effectiveness outcomes for these interventions for patients with breast cancer. 12 The current review suggests that during treatment, most teaching, guidance and counselling intervention studies reported at least one superior outcome (67%) including HRQoL (n=4), symptom burden (n=8), self-management/behavioural outcomes (n=4), patient satisfaction (n=4) and health service/resource use and costs outcomes (n=1).

Similar to teaching, guidance and counselling interventions, there is consistent evidence from RCTs that case management is effective for managing symptom burden in patients with breast cancer whether during treatment, 40 44 survivorship 46 48 or across the entire cancer trajectory. 20 The effectiveness of case management interventions on HRQoL and self-management/behaviour is less clear with superior intervention effects reported in 50% (n=2) and 25% (n=1), respectively. One study measured and reported greater patient satisfaction with treatment and rehabilitation in the nurse-led intervention group compared with usual care and two studies reported no overall difference in health service/resource use or costs outcomes. Thus far, evidence of effectiveness from the wider care coordination literature is conflicting. In a systematic review including 59 studies of patients with mixed-cancer types, it was reported that care coordination had no effect on HRQoL and symptom burden, but that patients with coordinated care felt more satisfied. 59 A more recent systematic review of observational studies and RCTs (n=52) in patients with cancer reported that coordination improved 81% of outcomes in patients and resulted in significantly higher odds of appropriate healthcare utilisation. 60

Surveillance interventions were the second most tested intervention in breast cancer and the most tested during survivorship and exclusively involved nurse-led follow-up care or early postoperative discharge instead of usual follow-up care or hospital discharge, respectively. The included RCTs consistently reported that nurse-led surveillance interventions in the survivorship phase were comparable to physician-led clinics for HRQoL, 22 34 36 49 50 symptom burden, 22 32–34 36 49 50 survival 32 and self-management/behavioural outcomes. 36 50 These studies also indicated that nurse-led follow-up care had greater health service/resource use and cost benefits 32 36 50 and patient satisfaction with care. 33 50 It is important to ensure that any nurse-led or shared-care model capitalises on the full potential of a nurse interventionist by preparing nurses to incorporate concurrent teaching, guidance and counselling and surveillance interventions. However, future studies should consider the additional preparation of nurses when evaluating cost effectiveness.

We did not identify any study with an overall inferior intervention effect for any outcome; however, one study did have conflicting health utility/costs outcomes. Lai et al 53 reported lower per person costs, but significantly fewer QALY health gains in the nurse-led case management intervention group that included counselling for self-care strategies and psychosocial support compared with usual care in a subgroup of patients receiving six cycles of chemotherapy, but not four cycles. However, this was a feasibility study and the authors recognise the limitations of a relatively small sample size (n=124) and the potential underestimation of QALY benefit from using a transformed quality of life score.

Similar to a previous review that had a broader focus of nurse-led services in all chronic conditions, 15 we identified insufficient reporting of interventionist qualifications and their levels of experience in oncology. Of the 31 included studies, only three studies listed the educational requirements for the interventionist. Further, although study-specific training was described by 16 studies, the depth of information about the content, duration and trainer expertise was highly variable and generally poorly reported. As such, we are unable to make recommendations about the skilling or requirements of nurses for implementing these interventions. Future studies should include such information as it is important for implementation of evidence into practice.

All studies were assessed as being at high risk of bias for at least one outcome. The Cochrane Revised Risk of Bias tool deems an overall high risk of bias for any study outcome with a high risk in at least one domain or some concerns in multiple domains in a way that substantially lowers confidence in the result. 17 The main attributor to overall high risk judgements was the lack blinding. Previous Cochrane reviews of psychosocial interventions in breast cancer highlighted blinding as a limitation of these complex interventions, but recommend that as a minimum the blinding of outcome assessors should be considered to improve the rigour of these studies. 61 62 However, blinding of outcome assessors for participant-reported outcomes (eg, HRQoL) where the participant is the assessor is not feasible in an unblinded complex intervention. In the current review, the lack of blinding, contributed to the missing outcome data domain where missing data in the outcome likely depended on its true value (particularly for self-reported outcomes), placing studies at risk of social desirability bias. Several studies attempted an attentional control which is highly recommended for these types of RCTs 63 ; however, reporting of blinding in these studies was often absent. In addition, it was often unclear as to whether participants were blinded or whether the control activities, such as providing information and resources on breast cancer and providing support, were associated with the study outcomes. One exception was Matthews et al 41 who implemented a previously tested attentional placebo control. Future studies should consider adopting attentional placebo control or a well-designed attentional control and provide information on blinding.

The majority of RCTs with a large sample size reported a positive effect of nurse-led teaching guidance and counselling interventions on symptom burden during treatment and survivorship. The benefits of these nurse-led interventions are less clear for HRQoL and self-management/behavioural outcomes and there is insufficient evidence of effects on survival outcomes, health service/resource use and cost, and perceived intervention benefits and patient satisfaction. Findings from this review suggest that teaching, guidance and counselling interventions are effective for alleviating symptom burden, but more research is needed to evaluate the effects on HRQoL, self-management/behaviour, survival, health service/resource use and cost, perceived intervention benefits and patient satisfaction.

During treatment, there is consistent evidence from two studies with large sample sizes that nurse-led case management interventions delivered online or via telephone have superior effects on symptom burden and equivocal effects on self-management/behavioural outcomes compared with usual care. 40 44 There is, however, insufficient evidence of effect on HRQoL. During survivorship, the evidence for effectiveness of nurse-led case management is less clear. Two small pilot studies report superior intervention effects on symptom burden compared with usual care or control; however, there was no information provided on the control condition in one study. Moreover, the effects on HRQoL self-management/behavioural outcomes are conflicting and no study reported survival, satisfaction or health service/resource use and costs. This suggests that case management interventions are effective for alleviating symptom burden during treatment, but its effects during survivorship are less clear. Therefore, there is a need for well-powered, well-controlled trials evaluating all outcomes, particularly during survivorship.

There is consistent evidence from randomised trials that nurse-led surveillance interventions, whether with structured or patient-initiated contact, are equivocal to usual care for HRQoL, symptom burden and self-management/behavioural outcomes during survivorship and treatment. There is insufficient evidence of effect on survival outcomes, health service/resource use and cost, and perceived intervention benefits and patient satisfaction. This suggests that nurse-led follow-up care is as safe and effective as physician-led follow-up care, but future research should evaluate the effects of these interventions on survival and impacts of the interventions on health service or resource use and costs.

This was a comprehensive systematic review following a predefined, registered review protocol. We included high-level evidence from RCTs to evaluate the effectiveness of nursing interventions. We implemented a taxonomy of outcomes recommended by a systematic review of nurse-led interventions 15 and synthesised the interventions using well-established categorisation systems (The Omaha System) for interventions and problem domains. 16

There were some limitations to this review. We conducted a comprehensive search of the literature and while all efforts were made to identify relevant studies, it is possible that some were excluded due to the lack of adequate information about the interventionist. All included studies were at high risk of bias for at least one outcome. The heterogeneous nature of the included studies did not allow statistical pooling of data. Collating studies using the Omaha System categories may have oversimplified the intervention effects, particularly the case management and teaching, guidance and counselling interventions which were often complex. However, we included detailed information about the designs and interventions of each included study in our report. We only included publications in English and most included study interventions were conducted in the USA, thereby limiting the generalisability of our findings.

There is consistent evidence from randomised trials that nurse-led surveillance interventions are as safe and effective as physician-led care and the majority of RCTs indicate that nurse-led teaching, guidance and counselling and case management interventions are effective for alleviating symptom burden. Overall, there are a lack of studies evaluating intervention effects on survival outcomes, patient satisfaction and perceived intervention benefits and health service/resource use and costs. Future studies should evaluate the HRQoL and self-management/behavioural outcomes and consider using a well-designed attentional placebo control to blind participants for self-report outcomes. Such studies should consider the Medical Research Council (MRC) complex intervention framework to gain better insights into which mechanisms are effective, thus providing deeper insights into these interventions which would then facilitate replication.

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Contributors All authors planned the research. RC, JM, KE, KP, JT, MS and PY conceptualised the review and research questions. RC, LT and SM designed the protocol and conducted the research. SM conducted searches. SM, JK and LT screened and evaluated studies. LT extracted study data. All authors contributed to reporting the research. RC and LT synthesised study results and took lead on writing the manuscript and all authors discussed the results and provided critical feedback on the manuscript. RC is responsible for the overall content as guarantor.

Funding The McGrath Foundation provided funding for this project.

Competing interests This research was a collaboration between McGrath Foundation and Queensland University of Technology. RC received grant funding from McGrath Foundation to conduct this research. JM, KE, KP, MS and JT are employees of the McGrath Foundation but were not involved in the systematic review beyond scoping the research questions, interpreting the data synthesis and reviewing the manuscript.

Patient consent for publication Not required.

Provenance and peer review Not commissioned; externally peer reviewed.

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Secondary breast care case studies

Below are case studies that support the information in the Secondary Breast Cancer Nursing toolkit. 

Effective Data Collection, Frimley Park, Surrey

How the trust uses the Somerset Cancer Register and a team approach to accurately record data about patients with secondary breast cancer

Stratified patient follow up, The Christie, Manchester

How the team re-designed their service, using a co-production approach in order to meet the varying needs of a large caseload.

Developing a new service, Western General Hospital, Edinburgh

How the hospital designed a new service for secondary breast cancer patients.

Delivering a multi-disciplinary service, Velindre Cancer Centre, Cardiff

How the hospital established the first dedicated metastatic MDT in Wales and works with non-clinical teams to ensure patients’ holistic needs are addressed.

The case for a new secondary breast cancer specialist nurse, Truro

How the hospital expanded their service from one to two nurses to meet increasing patient demand

Reallocation of work in a CNS team, Lanarkshire 

How reorganising the way the team worked enabled them to provide more consistent support to their patients with secondary breast cancer.

Joint Breast CNS & Specialist Pharmacy led clinics for patients with oestrogen receptor positive metastatic breast cancer, Sheffield 

How joint Macmillan Nurse and Pharmacist led clinics reduced patient waiting times, freed up consultant time and addressed a wider range of patient needs.

The role of Band 4 Support Worker alongside CNS Secondary Breast Cancer , Northampton

The use of a Band 4 Support worker to maximise CNS time spent with patients. 

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• Optimizing Outcomes in Patients with HER2+ Metastatic Breast Cancer

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Case 1: 48-Year-Old Patient With HER2+ Metastatic Breast Cancer

EP: 1 . Best Practices: HER2+ MBC With Brain Mets

EP: 2 . Frontline Standards of Care for HER2+ MBC

EP: 3 . Case 1: 48-Year-Old Patient With HER2+ Metastatic Breast Cancer

EP: 4 . Treatment Strategies for Relapsed/Refractory HER2+ MBC

EP: 5 . Case 2: 61-Year-Old Patient With R/R HER2+ MBC

EP: 6 . Cancer Network Around the Practice: Relapsed/Refractory HER2+ Metastatic Breast Cancer

Adam M. Brufsky, MD, PhD: Let’s talk about this case. This is a 48-year-old woman who presented to her primary care physician a number of years ago with a lump in her breast. She had a 4.4-cm left breast mass and 3 palpable axillary lymph nodes. Her ultrasound and mammogram confirmed these physical findings.

She was referred to a medical oncologist and had a core needle biopsy that showed ER- [estrogen receptor-negative]/PR- [progesterone receptor-negative], HER2 [human epidermal growth factor receptor 2]-positive by IHC [immunohistochemistry score] that was 3+. A CT scan of the chest, abdomen, and pelvis showed 3 liver lesions, the largest being 3.1 cm. This is the de novo patient we always talk about. She had an MRI of the brain and it was negative for metastasis. She received 6 cycles of THP [docetaxel, trastuzumab, pertuzumab], followed by HP [trastuzumab, pertuzumab] for another 12 months. That’s 18 months of therapy.

She had a partial response in her breast mass, and her liver lesions fully responded. Later, she suddenly began to have rapid unexplained weight loss. The CT scan only showed 2 new liver lesions, so not quite the symptom I would imagine. She then got a brain MRI that showed about 30 widely scattered lesions, the largest being about 0.5 or 0.6 [cm]. They have all these little punctate ones; you’ve all seen those.

The question is: what treatment would you give this person? Let’s say the brain MRI shows 3 lesions, all in the frontal cortex, with the largest being 1.5 cm. That makes it a little bit of a different question because if there are widely scattered lesions, we’re not going to want to do SRS [stereotactic radiosurgery]. We are probably going to want to do whole brain radiation. Let’s say she’s asymptomatic with no edema. The polling question is: what treatment would you recommend? T-DM1 [trastuzumab emtansine], tucatinib/trastuzumab/capecitabine, SRS to the brain metastases, clinical trial, or other.

You guys could answer that question. Let me start with Sara. How would you approach this?

Sara A. Hurvitz, MD, FACP: They’re not totally mutually exclusive, right? You could do SRS and switch systemic therapy. She is progressing systemically in the liver, so I think switching systemic therapy makes sense. I like tucatinib because it does penetrate the blood-brain barrier, but I would still be tempted and would probably talk to my radiation oncology and neurosurgery colleagues. We’d probably end up doing both the SRS and tucatinib-based therapy.

Adam M. Brufsky, MD, PhD: That’s reasonable. VK, do you have any other comments on this?

VK Gadi, MD, PhD: Yes, I agree. The tolerability of the regimen is good. You might even give this lady an opportunity to fly without SRS and have that in your back pocket. If you’re not seeing control, you can go to SRS at a later time. I don’t think there’s a wrong answer here. You could probably do it both ways.

Adam M. Brufsky, MD, PhD: Neil, do you have something to add?

Neil M. Iyengar, MD: No. She fits perfectly into the HER2CLIMB population, so I agree with everything that has been said because there is demonstrated activity of the tucatinib-based regimen in terms of CNS [central nervous system] response. Coupling that with SRS is reasonable. This is the patient we were talking about earlier with whom we would discuss foregoing local therapy to the brain. That’s a reasonable discussion here. It’s a tricky poll question because my kneejerk response would be to put her on a clinical trial. We should all be trying to prioritize clinical trials, but in the absence of that clinical availability, tucatinib plus or minus radiation is a reasonable option.

Adam M. Brufsky, MD, PhD: There’s a clinical trial that’s great; it’s not scientifically spectacular, but clinically, it’s fabulous. I believe it’s called DESTINY. In fact, I put a patient on it today with trastuzumab deruxtecan and tucatinib together. That’s a great trial that’s going to accrue quickly. If we could put as many people as we can on that, we can answer the clinical question quickly. I would agree.

I have 1 last question before we go on to the last 25 minutes and the last segment. What do you tell people about [adverse] effects? Are you seeing a lot of [adverse] effects with tucatinib? Do you have to dose reduce it at all when you give it? These are questions people who haven’t had a lot of experience with it usually ask. I’ll start with Neil. Do you see a lot of diarrhea? Do you have to dose reduce with tucatinib?

Neil M. Iyengar, MD: In my experience, this regimen is quite tolerable. We all, as oncologists, have unfortunately become very comfortable with managing diarrhea, along with oncology nursing and so forth. What I have found with the tucatinib-based regimen is that with the initiation of antidiarrheal agents, the diarrhea usually resolves or improves pretty quickly. People have to know about it and be prepared to deal with it immediately. It does come on early, usually within the first cycle.

The other consideration to keep in mind with tucatinib is that many of the [adverse] effects are likely related to capecitabine. We’re all very comfortable with managing capecitabine-related toxicity and dose modifying capecitabine as needed. We see in the HER2CLIMB data that patients in the tucatinib arm stayed on study longer and were therefore exposed to capecitabine for longer than those in the placebo arm. I think a lot of the toxicities are familiar ones that are related to capecitabine and are quite manageable.

Adam M. Brufsky, MD, PhD: Great. VK and Sara, do you have any other comments about this toxicity? Do you see any toxicity at all with this, more than you’d expect?

Sara A. Hurvitz, MD, FACP: It’s well tolerated. About 13% had grade 3/4 diarrhea. Before getting on this call, I had to dose reduce a patient on this therapy. It’s hard to tell. On the clinical trial we enrolled patients, and I had a patient on who had severe colitis, hospitalization, etc, and I was sure she was getting tucatinib. When she was unblinded after the data came out, it turned out that she wasn’t on tucatinib. She was on placebo. I completely agree that these are [adverse] effects we’re used to with capecitabine. There’s not a whole lot of difference. Tucatinib is pretty well tolerated.

VK Gadi, MD, PhD: I agree. I think the capecitabine is the real culprit. The people on the trial were actually on it for so much longer that the toxicities from capecitabine emerged ongoing on the study. That has been my experience. Something important we don’t yet have is the PRO [patient-reported outcomes] data from these studies. A lot of my colleagues, especially those in communities where patients come in from a long way away, know that this is a tremendous pill burden with this regimen. Sometimes a parenteral regimen that you’re giving every 3 weeks is better for patients. I’m curious to see what those data look like when they come out. From our perspective as physicians, this is a slam dunk and it’s easy to give, but that’s not always the perspective that matters.

Adam M. Brufsky, MD, PhD: I agree.

Sara A. Hurvitz, MD, FACP: Yes, I think the quality of life PRO data were presented at the San Antonio [Breast Cancer Symposium]. I’m trying to pull it up. I don’t have it right at my fingertips, but my recollection was that it looked fairly good, that the quality of life was maintained.

Adam M. Brufsky, MD, PhD: Right, but they’re not going to tell you that they’re struggling to take all those pills. It’s a lot.

Sara A. Hurvitz, MD, FACP: That’s true.

Adam M. Brufsky, MD, PhD: It’s about 9 pills a day, which is a lot.

Neil M. Iyengar, MD: The quality of life data are always interesting because the end point of choice is time to deterioration and whether we are avoiding that. I think that’s a fairly low bar.

Adam M. Brufsky, MD, PhD: Exactly. Women are going to do anything they can.

Transcript edited for clarity.

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Pathophysiology

Normal physiology of the human breast.

Prior to sexual maturity, male and female breasts are structurally and functionally similar; they are both comprised of small immature nipples, fatty and fibrous tissue and several duct-like arrangements beneath the areola. 

When puberty is underway in males and females, this is where the major structural development occurs. Male breasts remain unchanged due to the lack of high levels of estrogen and progesterone. Females, on the other hand, have significant changes occur due to an assortment of hormones (estrogen, growth hormone, insulin-like growth factor-1, progesterone, and prolactin) (p.739) that cause the female breast to develop into a lactating system. 

  The mature female breast’s foundational unit is the lobe (each breast contains 15-20) a system of ducts which is comprised of and supported by Cooper ligaments. Each lobe is made up of 20-40 lobules (glands that produce milk). The lobules contain alveolar cells, which are complicated spaces lined with epithelial cells that secrete milk and sub-epithelial cells that contract, passing milk into the arrangement of ducts that leads to the nipple (p. 739). 

The lobes and lobules are enclosed and separated by muscle strands and adipose connective tissue which varies in amount depending on weight, genetics, endocrine factors and contributes to the diversity of breast size and shape.

(Memorial Sloan Kettering Cancer Center)

During the reproductive years, breast tissue undergoes cyclic changes in response to hormonal changes of the menstrual cycle. After menopause, adipose deposits and connective tissue increases, glandular breast tissue becomes involuted, and breasts are reduced in size and form. Due to elevated aromatase (decreases circulating estrogen) there can be an  increase in white adipose tissue inflammation (p.740).

The function of the female breast is primarily to provide a source of nourishment for the newborn; however, breasts are also a source of pleasurable sexual sensation and in Western cultures have become a sexual symbol (p.741).

(McCance, K. L., & Heuther, S. E. (2019). Pathophysiology: The biological basis for disease in adults and children (8th ed., pp.739-741). St. Louis, MO: Mosby.)

Pathophysiology of Breast Cancer 

Except for skin cancer, breast cancer is the most common cancer in American women. Most breast cancer occurs in women older than 50 years. The major risk factors for breast cancer are classified as reproductive, such as nulliparity and pregnancy-associated breast cancer; familial, such as inherited gene syndromes; and environmental and lifestyle, such as hormonal factors and radiation exposure. Some examples of known carcinogenic agents with sufficient evidence in humans that contribute to the development of breast cancer are alcoholic beverages, diethylstilbestrol, estrogen-progestogen contraceptives, estrogen-progestogen menopausal therapy, X-radiation and γ-radiation (Rote, 2019). Other important factors are delayed involution of the mammary gland and increased breast density.

Overall, lifetime risk of breast cancer is reduced in parous women compared to nulliparous women, but pregnancy must occur at a young age. The influence of pregnancy on the risk of cancer also depends on family history, lactation postpartum, and overall parity. Breast gland involution after pregnancy and lactation uses some of the same tissue remodeling pathways activated during wound healing. The presence of macrophages in the involuting mammary gland contributes to carcinogenesis. 

Most breast cancers are adenocarcinomas and first arise from the ductal/lobular epithelium as carcinoma in situ. Carcinoma in situ is an early-stage, noninvasive, proliferation of epithelial cells that is confined to the ducts and lobules, by the basement membrane. About 84% of all in situ disease is ductal carcinoma in situ (DCIS); the remainder is mostly lobular carcinoma in situ (LCIS) disease.  Ductal carcinoma in situ (DCIS) refers to a heterogenous group of proliferative lesions limited to ducts and lobules without invasion to the basement membrane. DCIS occurs predominantly in women but can also occur in men. DCIS has a wide spectrum of risk for invasive cancers. Preinvasive lesions do not invariably progress to invasive malignancy. Lobular carcinoma in situ (LCIS) originates from the terminal duct-lobular unit. Unlike DCIS, LCIS has a uniform appearance; thus, the lobular structure is preserved. The cells grow in non-cohesive clusters, typically because of a loss of the tumor-suppressive adhesion protein E-cadherin . Also, unlike DCIS, LCIS is found as an incidental lesion from a biopsy and not mammography, is more likely to be present bilaterally.

(Winslow, 2012)

Breast cancer is a heterogeneous disease with diverse, molecular, genetic, phenotypic, and pathologic changes. Tumor heterogeneity results from the genetic, epigenetic, and microenvironmental influences (selective pressure) that tumor cells undergo during cancer progression. Cellular subpopulations from different sections of the same tumor vary in many ways including growth rate, immunogenicity, ability to metastasize, and drug response, demonstrating significant heterogeneity. The biological attributes of a tumor as a whole are strongly influenced by its subpopulation of cells with cellular populations communicating through paracrine or contact-dependent signaling (juxtacrine) from ligands and mediated from components of the microenvironment such as blood vessels, immune cells, and fibroblasts. 

Figure 1. Histological special types of breast cancer preferentially oestrogen receptor positive. (A) Tubular carcinoma, (B) cribriform carcinoma, (C) classic invasive lobular carcinoma, (D) pleomorphic invasive lobular carcinoma, (E) mucinous carcinoma, (F) neuroendocrine carcinoma, (G) micropapillary carcinoma, (H) papillary carcinoma, (I) low grade invasive ductal carcinoma with osteoclast-like giant cells. (Weigelt, Geyer, & Reis-Filho, 2010)

Figure 2. Histological special types of breast cancer preferentially oestrogen receptor negative. (A) Adenoid cystic carcinoma, (B) secretory carcinoma, (C) acinic-cell carcinoma, (D) apocrine carcinoma, (E) medullary carcinoma, (F) metaplastic carcinoma with heterologous elements, (G) metaplastic carcinoma with squamous metaplasia, (H) metaplastic spindle cell carcinoma, (I) metaplastic matrix-producing carcinoma. (Weigelt, Geyer, & Reis-Filho, 2010)

Gene expression profiling studies have identified major subtypes classified as luminal A, luminal B, HER2+, basal-like, Claudin-low, and normal breast. These subtypes have different prognoses and responses to therapy. Tumors can be stratified with gene expression profiles such as Oncotype Dx, Prosigna, and MammaPrint on the basis of genetic profiles. This information helps personalize breast cancer treatment and determine which women need aggressive systemic treatment for high-risk cancers versus close surveillance for indolent tumors.

Many models of breast carcinogenesis have been suggested and the expanding themes include (1) gene addiction, (2) phenotype plasticity, (3) cancer stem cells, (4) hormonal outcomes affecting cell turnover of mammary epithelium, stem cells, extracellular matrix, and immune function. 

Cancer gene addiction includes oncogene addiction, whereby these driver genes play key roles in breast cancer development and progression. In non-oncogene addiction, these genes may not initiate cancer but play roles in cancer development and progression. Examples of key driver genes include HER2 and MYC, and examples of tumor-suppressor genes include TP53, BRCA1, and BRCA2. Once a founding tumor clone is established, genomic instability may assist through the establishment of other subclones and contribute to both tumor progression and therapy resistance. 

Phenotypic plasticity is exemplified by a distinctive phenotype called epithelial-to-mesenchymal transition (EMT) . EMT is involved in the generation of tissues and organs during embryogenesis, is essential for driving tissue plasticity during development, and is hijacked during cancer progression. The EMT-associated programming is involved in many cancer cell characteristics, including suppression of cell death or apoptosis and senescence. It is reactivated during wound healing and is resistant to chemotherapy and radiation therapy. Remodeling or reprogramming of the breast during post-pregnancy involution is important because it involves inflammatory and “wound healing-like” tissue reactions known as reactive stroma or inflammatory stroma . The reactive stroma releases various signals and interleukins that affect nearby carcinoma cells, inducing these cells to activate their previously silent EMT programs. The activation is typically reversible (i.e., plasticity), and those EMT programs may revert through mesenchymal-epithelial (MET) to the previous phenotypic state before the induction of the EMT program. Reactive stroma increases the risk for tumor invasion and may facilitate the transition of carcinoma in situ to invasive carcinoma. Activation of an EMT program during cancer development often requires signaling between cancer cells and neighboring stromal cells. In advanced primary carcinomas, cancer cells recruit a variety of cell types into the surrounding stroma. Overall, increasing evidence suggests that interactions of cancer cells with adjacent tumor-associated stromal cells induce malignant phenotypes.

Figure 3. Putative EMT and MET in breast cancer progression. Normal epithelial cells undergo a series of transformational changes to become malignant tumor cells. Clonal proliferation of malignant cells gives rise to invasive carcinoma. Some of these cells undergo EMT and enter into the neighboring blood vessels or lymphatic vessels. These cells may remain in the circulation as circulating tumor cells or may extravasate at a distant site. The extravasated tumor cells form macrometastasis by a reverse mechanism known as MET. EMT, epithelial-mesenchymal transition; MET, mesenchymal-epithelial transition. (Liu, Gu, Shan, Geng, & Sang, 2016)

Using a mouse model of tumor heterogeneity, investigators demonstrated different clones within the heterogeneous population had distinct properties, such as the ability to dominate the primary tumor, or to contribute to metastatic populations, or to enter the lymphatic or vascular systems via vascular mimicry. 

(Wagenblast et al., 2015)

Figure 4. Two adjacent sections of a mouse breast tumor. Tissue at left is stained so that normal blood vessels can be seen (brown arrow). Extending from these vessels are blood filled channels (green arrows). On the right, the tissue is stained for a fluorescent protein expressed by the tumor cells. Here it is seen that blood-filled channels are actually formed by tumor cells in a process known as vascular mimicry.  The team demonstrate that the tumor cells lining these channels help drive metastasis, the process by which tumors spread. (Ravindran, 2019)

Invasion by primary tumor cells typically involves the collective migration of large cohesive groups into adjacent tissue rather than the scattering of individual carcinoma cells. However, still unknown are the precise events occurring at the invasive stage. Dormant carcinoma cells called minimal residual disease (MRD) appear to perpetuate carcinogenesis and form the precursors of eventual metastatic relapse and, sometimes, rapid cancer recurrence. Dormant cells have exited the cell cycle and are not proliferating. Thus current treatments that preferentially kill proliferating cells render dormant cells intrinsically more resistant and may remain after initial chemotherapy, radiotherapy, and surgery. 

Emerging evidence supports three main prerequisites that must be met for metastatic colonization to succeed: the capacity to seed and maintain a population of tumor-initiating stem cells; the ability to create adaptive, organ-specific colonization programs; and the development of a supportive microenvironmental niche. Metastases may also occur early in the process of neoplastic transformation.

Figure 5 . Extracellular matrix (ECM) changes in breast cancer progression and metastasis. The primary components of the ECM in normal mammary gland are significantly changed in breast cancer. A desmoplastic reaction is associated with breast cancer development, due to the increased production of fibrous ECM by activated fibroblasts and cancer cells. The increased collagen deposition and crosslinking by lysyl oxidase (LOX) enzymes, together with the increased production of fibronectin and other ECM components, stiffens the ECM, which in turn promotes tumor aggressiveness. The basement membrane surrounding the mammary gland epithelium is broken down by ECM remodeling enzymes like MMPs, heparanase and others. Matricellular proteins that promote cancer cell fitness such as tenascin C, periostin, osteopontin, SPARC and thrombospondin-1 are also upregulated. Breast cancer cells from the primary tumor, that include cells with the ability to establish metastatic colonies, enter the blood circulation, disseminate and can reach distant sites. While the vast majority of disseminated cancer cells are eliminated or undergo dormancy due to the adverse environment, few cancer cells are able to resist the selective pressure and establish a metastatic colony. These cells may rely on signals from the ECM such as type I collagen (collagen I), crosslinked by LOX. Tenascin C (TNC) and periostin (POSTN), which are crucial ECM proteins of the metastatic niche, promote stem/progenitor pathways and metastatic fitness in disseminated breast cancer cells. (Insua-Rodríguez & Oskarsson, 2016)

The first clinical manifestation of breast cancer is usually a small, painless lump in the breast. Other manifestations include palpable lymph nodes in the axillae, dimpling of the skin, nipple and skin retraction, nipple discharge, ulcerations, reddened skin, and bone pain associated with bony metastases. 

Treatment is based on the extent or stage of the cancer and includes surgery, radiation, chemotherapy, hormone therapy, and biologic therapy.

(Unless otherwise cited, all pathophysiology information was gathered from Danhausen, Phillippi, & McCance, 2019)

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Clinical Meaningfulness: Insights from a Metastatic Breast Cancer Qualitative Study

Although no curative treatment exists for  metastatic breast cancer , advances in care options have significantly improved the long-term survival rate of patients. The disease now has a median survival rate of 3 years , albeit this figure is subject to disease subtype, patient characteristics, and access to healthcare services. Perhaps more importantly, treatment discussions for metastatic breast cancer continue to be informed by patient values, preferences, and care goals, as the importance of  clinical meaningfulness is increasingly recognized by cancer care teams in the United States. 

Clinical meaningfulness involves ensuring treatment outcomes are relevant to what patients consider important (ie, quality of life and survival). However, it is defined differently among providers, patients, and caregivers. While some consider survival length important (eg, 6 months to 2 years), others highlight the importance of progression-free survival time and life events such as birthdays and holidays as meaningful for their cancer care journey. Clinical meaningfulness may also change over time and requires continued reassessment of what matters most to the patient.

In the context of metastatic breast cancer, clinical meaningfulness involves interventions that not only extend survival but also enhance the overall well-being of patients. This includes therapies that effectively control the progression of the disease, alleviate symptoms, minimize treatment side effects, and/or allow patients to maintain a good quality of life, for as long as possible. To ensure clinical meaningfulness, it is imperative for providers to engage patients and other key stakeholders throughout the cancer care journey.

“Clinical meaningfulness in metastatic breast cancer care must consider the individual patient’s goals, preferences, and values. Care teams need to consider multiple factors including treatment tolerability, impact on physical and emotional health, ability to maintain relationships and engage in meaningful activities, as well as overall satisfaction with care.” -Molly Kisiel, MSN, FNP-BC, Director Clinical Content, ACCC

Phase 1: Qualitative Research Study

To further explore clinical meaningfulness in comprehensive care delivery for patients with metastatic breast cancer, the Association of Cancer Care Centers (ACCC)—in partnership with the Academy of Oncology Nurses and Patient Navigators (AONN) and the Advanced Practitioner Society for Hematology and Oncology (APSHO)—participated in a multi-stakeholder collaboration with Gilead Sciences, PRECISIONheor, and Brown University to conduct a study assessing stakeholder perspectives on clinical meaningfulness and clinically meaningful outcomes in metastatic breast cancer. Patient advocacy partners included: Living Beyond Breast Cancer; Sharsheret; Touch, the Black Breast Cancer Alliance; and Dr. Susan Love Foundation for Breast Cancer Research.

The qualitative semi-structured study aimed to identify how these concepts are operationalized within current oncology clinical practice.

Study objectives included:

• Examining perspectives on clinical meaningfulness and clinically meaningful outcomes associated with metastatic breast cancer treatment
• Identifying how clinically meaningful outcomes are incorporated into treatment discussions in the clinical practice setting.

Study participant demographics included people living with metastatic breast cancer, caregivers, and providers (ie, oncologists, advanced practice providers [APPs], and oncology nurses). Twenty-two focus groups were conducted with 50 patients, 24 caregivers, 8 oncologists, 13 APPs, and 17 oncology nurses between March and June 2023 across 24 states in the US.

Study Findings

Results showed a lack of awareness among patients and caregivers on the concepts of clinical meaningfulness and clinically meaningful outcomes. Providers reported awareness of these concepts, but noted they were not used in discussions with patients on treatment recommendations. Regarding the definition of clinical meaningfulness, while some providers described it as quantitative endpoints (eg, additional months of survival, progression-free survival), participants across all groups described clinically meaningful outcomes predominantly as patients’ abilities to achieve life goals. Additionally, across all stakeholders, participants stressed that outcomes considered meaningful are highly individualized and dynamic, evolving over time as patients move through the care continuum and their life stages.

The study revealed the following recommendations:

• Providers should employ accessible and patient-friendly terminology in treatment decision-making discussions.
• Providers should take a patient centered approach during treatment decision-making discussions, with inclusive, dynamic patient-provider conversations and continuous evaluation of patient priorities across the care continuum, not just at diagnosis.
• Outcomes should be examined beyond overall survival to be considered meaningful. Other important factors include quality of life, progression-free survival, minimal or manageable side effects, and improvement in symptom burden and daily functioning.

Ensuring clinically meaningful outcomes should be the primary focus for both the care team and patients when making treatment decisions, particularly in the challenging scenario of metastatic breast cancer. It is essential to continually reassess this aspect throughout the treatment journey. Meaningful dialogues with patients and their caregivers should be integrated into the treatment plan to gauge whether adjustments are necessary based on evolving treatment goals.

Consequently, providers should actively involve the entire care team in shared decision-making processes, as patients may occasionally feel more comfortable discussing their evolving goals with other team members. In the context of ACCC members, the pursuit of clinical meaningful outcomes holds significant importance, particularly concerning patient navigation, managing financial burdens, and prioritizing quality of life for cancer patients.

Phase 2: Quantitative Survey Study

While the Phase 1 study has concluded, this important work continues. In March 2024, ACCC will collaborate with its partners on a Phase 2 Quantitative Survey to assess patient, caregiver, and oncology provider perspectives on clinical meaningfulness and novel treatments, while identifying issues of concern among stakeholders related to the treatment of metastatic breast cancer. Objectives for Phase 2 include quantifying how perspectives and opinions of stakeholders may vary by clinical and demographic characteristics, how attitudes and beliefs of providers may vary by demographic and practice characteristics, and analyzing the role oncology clinicians play in treatment decision-making and supportive care for patients with metastatic breast cancer.

For more information on the quantitative phase of this study, contact ACCC’s Provider Education Department.

• Graff, S., Freeman, E., Roach, M., Wilson, R., Stemland, J., Chan, B., Katz, J., May, S. Patient-Centered Collaborative Research: Exploring Perspectives on Clinical Meaningfulness in Metastatic Breast Cancer with Clinicians, Patients, and Caregivers. JCO Oncol Prac 19, 2023, suppl 11; abstr 338
• Graff, S. Freeman, E., Roach, M., Wilson, R., Fairley, R., Gullatte, M., Stemland, J., Chan, B., Wochal, P., Katz, J., and May, S. Understanding Clinical Meaningfulness in Metastatic Breast Cancer Treatment-Decision Making: Experiences and Perspectives of Patients, Caregivers, and Clinicians. 2023 December 6, 2023. San Antonio Breast Cancer Symposium abstract PO1-10-06

This program was made possible by support from PRECISIONheor.

This study is sponsored and funded by Gilead Sciences, Inc.

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• Open access
• Published: 19 March 2024

Coping with breast cancer during medical and occupational rehabilitation: a qualitative study of strategies and contextual factors

• Paula Heidkamp 1 , 2 , 3 ,
• Kati Hiltrop 1 , 2 , 3 ,
• Clara Breidenbach 2 , 4 ,
• Christoph Kowalski 4 ,
• Holger Pfaff 5 ,
• Franziska Geiser 6 &
• Nicole Ernstmann 1 , 2 , 3  

BMC Women's Health volume  24 , Article number:  183 ( 2024 ) Cite this article

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Metrics details

This study aimed to gain a deeper understanding of the coping processes of breast cancer survivors (BCSs) during medical and occupational rehabilitation after acute treatment.

This study is part of the mixed-methods Breast Cancer Patients’ Return to Work study conducted in Germany. Data were collected through semistructured interviews with 26 female BCSs 5–6 years after their diagnosis. A qualitative content analysis was conducted to investigate the coping strategies and contextual factors of coping of BCSs.

The participants used different strategies for coping with their breast cancer, namely, approach- versus avoidance-oriented coping and emotion- versus problem-focused coping . During the medical rehabilitation process, coping behavior was used mainly to address disease management and its consequences. During the occupational rehabilitation process, most coping strategies were used to overcome discrepancies between the patient’s current work capacity and the job requirements. The contextual factors of coping were in the health, healthcare, work-related, and personal domains.

The study findings provide in-depth insights into the coping processes for BCSs during the rehabilitation phase and highlight the importance of survivorship care after acute cancer treatment.

Implications for Cancer survivors

The results indicate that BCSs employ approach- and avoidance-oriented strategies to cope with their cancer during rehabilitation. As both attempts are helpful in the short term to cope with physical and emotional consequences of the cancer, healthcare and psychosocial personnel should respect the coping strategies of BCSs while also being aware of the potential long-term negative impact of avoidance-oriented coping on the rehabilitation process.

Peer Review reports

Introduction

Breast cancer (BC) is the most common cancer among women in Germany, with almost 70,500 newly diagnosed cases annually [ 1 ]. Screening programs and treatment advances have increased these patients’ chance of early diagnosis and survival rate [ 1 ]. About 30% of these patients are 59 years old or younger [ 1 ] and thus in the working-age group. Thus, it is imperative to not only restore physical and mental abilities but also reinstate the ability to work for BC survivors (BCSs) after acute treatment. The rehabilitation phase after acute cancer treatment is characterized by the reintegration into social roles while presenting various challenges for patients, such as feeling alone with treatment-related symptoms, struggling with a different self-perception and changes in personal relationships, and returning to work, along with associated worries, such as concerns regarding one’s performance limits [ 2 , 3 ]. Furthermore, after completing acute treatment, cancer survivors (CSs) still report lower quality of life than the general population [ 4 , 5 ] and considerable psychological distress [ 6 ]. To cope with their illness after acute treatment, BCSs employ different strategies [ 7 , 8 ].

According to the transactional model of stress, coping is defined as “ongoing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (R. S. Lazarus, [ 9 ], p. 237). Roesch et al. [ 10 ] suggested a literature-based taxonomy to classify the coping strategies of patients with prostate cancer around two dimensions: approach- versus avoidance-oriented coping and emotion- versus problem-focused coping . Approach-oriented coping refers to coping activity oriented toward a threat, such as seeking information, whereas avoidance coping refers to an attempt to direct attention away from a threat, such as by denial [ 10 ]. Emotion-focused coping aims to regulate the emotional consequences of a stressful situation, such as by positive reinterpretation [ 11 ], whereas problem-focused coping is the active attempt to influence the source of stress, such as by seeking instrumental support.

Coping style is relevant among BCSs as different patterns predict psychological symptoms and quality of life outcomes, even years after the diagnosis [ 12 , 13 ]. Compared with approach-oriented coping, avoidance-oriented coping exerts an adverse effect and is associated with lower quality of life and worse physical and psychological health [ 10 , 12 , 14 , 15 , 16 ]. To support patients with cancer who employ coping strategies with a potential negative impact on long-term quality of life, an understanding of contextual factors that influence coping style is critical. Quantitative studies on the predictors of coping in cancer patients and survivors found significant effects of education, age, sex, therapy, social support, and marital status [ 17 , 18 , 19 ]. However, specific knowledge of coping strategies and contextual factors is scarce for BCSs during rehabilitation. There is some evidence that patients with cancer who participate in an inpatient oncological rehabilitation program are more active in managing their illness than nonparticipants and that rehabilitation exerts positive effects on emotional stabilization, anxiety reduction, and resource strengthening for cancer patients [ 20 ]. Therefore, participation in a rehabilitation measure is assumed to exert a positive effect on how patients deal with their illness. However, to date, coping among CSs has not been a focal point of qualitative research [ 21 ]. Thus, this study aimed to gain a deeper understanding of coping processes among BCSs in Germany after acute cancer treatment during medical and occupational rehabilitation by analyzing coping strategies and contextual factors using qualitative interview data from BCSs 5–6 years after diagnosis.

Materials and methods

Study design.

This study is part of the mixed-methods BC Patients’ Return to Work (B-CARE) study conducted in Germany [ 22 ]. Interview and survey data were collected 5–6 years after diagnosis to explore the rehabilitation of BCSs; however, this study focused solely on the interview data, particularly on medical and occupational rehabilitation. The definition of these phases is based on the interviewees’ subjective understanding of medical and occupational rehabilitation. Regarding medical rehabilitation , the experiences reported by patients relate to the period after acute treatment, mainly associated with the completion of chemotherapy and radiotherapy at the cancer center. During this period, interviewees either participated in an oncological rehabilitation measure or did not participate and instead pursued other activities to restore health. The occupational rehabilitation phase involves the process of resuming work after the diagnosis. The University of Bonn Ethics Committee of the Medical Faculty approved this study (approval number: 316/18; German Clinical Trials Registry number: DRKS00016982).

Recruitment and sampling

The B-CARE study is a follow-up to the PIAT study (Strengthening Patient Competence: Breast Cancer Patients’ Information and Training Needs) and represents a subsequent survey of the PIAT sample. The preceding PIAT study aimed to explore the information needs of BC patients. A total of 1359 patients initially diagnosed with BC were recruited from 60 BC centers throughout Germany [ 23 ] and were surveyed at three measurement time points: during hospitalization (T1), 10 weeks after hospital discharge (T2), and 40 weeks after hospital discharge (T3). The follow-up B-CARE study aimed to investigate the long-term rehabilitation process of BCSs. To this end, the existing longitudinal PIAT data was utilized, and an additional measurement time point for a survey and qualitative interviews, 5–6 years after diagnosis (T4), was added. The PIAT participants who consented to be recontacted and were working at the time of diagnosis were invited to participate in the follow-up B‐CARE study 5–6 years later. A total of 184 BCSs participated in the B-CARE survey. Those who had provided written consent for an additional interview were invited via telephone or email and were informed about the procedure (audio recording, data use) and subsequently provided informed consent. Regarding the selection of interviewees, purposive sampling was employed [ 24 ]. The sampling strategy aimed to include contrasting cases with characteristics considered to be relevant to the research focus. Quantitative survey data were utilized to select interviewees with differences in sociodemographic characteristics (e.g., age, family status), rehabilitation experiences (e.g., participation/nonparticipation in an inpatient oncological rehabilitation program after acute treatment), and occupational variations (e.g., return to work after treatment, job changes that occurred). The sampling process continued until data saturation was reached [ 25 ].

Data collection

Data were collected through semistructured interviews via telephone or in person between August 2019 and August 2020 in the participant’s preferred location, mainly at home. The interviews were audiotaped and lasted 53 min on average. The interview guide included 12 guiding open-ended questions and discussion of medical and occupational rehabilitation topics, coping strategies, and fear of cancer recurrence. In addition to the guiding open-ended questions, the interview guide included follow-up questions that could be asked if necessary. Examples of leading open-ended and follow-up questions are as follows: (1) Leading open-ended question: “Why don’t you tell us how it came about that you did not take advantage of rehabilitation measures?” Follow-up question: “What concerns did you have?” (2) Leading open-ended question: “What helped you cope with your illness?” Follow-up question: “Did you seek help? In what form?” To improve the understandability and suitability of the interview guide, two cognitive pretests were conducted. The interviews were conducted by two research assistants (KH, PH).

Data analysis

The interview materials were transcribed verbatim. For data management, transcripts were entered into the software program ATLAS.ti (ATLAS.ti Scientific Software Development GmbH, Berlin, Germany) and analyzed after a qualitative content analysis according to the method described by Kuckartz [ 26 ]. All 26 transcripts were read, and the relevant text passages were marked. A deductive coding scheme was established according to the method described by Roesch et al. [ 10 ] with two coping categories: approach-/avoidance-oriented and emotion-/problem-focused. The transcribed interviews were reviewed from beginning to end, and relevant sections of the text were assigned to the main categories. The units of meaning were coded, which could also comprise several sentences or paragraphs. The text sections with the same main categories were compiled. Then, the main categories were differentiated by assigning them subcategories. Subcategories (coping strategies) were coded deductively inspired by the work of Roesch et al. [ 10 , 27 ], the COPE [ 28 ], the Coping Responses Inventory [ 29 ], and the Ways of Coping Questionnaire [ 11 ] and were complemented by inductively derived codes. All materials were coded using the resulting coding system. If necessary, text passages could also be assigned to multiple coping strategies. Furthermore, the data were coded regarding secondary information that were relevant in the context of coping behavior (e.g., health- and work-related characteristics). The main categories (e.g., health-related contextual factors) and subcategories (e.g., participation in a rehabilitation program) were inductively coded. Subsequently, the contextual factors of coping strategies were analyzed by investigating the associations between the subcategories that emerged (coping strategies) and secondary information. To ensure reliability, the data were coded by two scientists (PH, KH). Any coding differences were discussed until consent was reached. Typical quotes were selected to illustrate the results. Filling words and duplications were omitted to increase readability.

A total of 26 interviewees were selected using purposeful sampling. Their average age was 57 years, and most of them were married and had a part-time employment during the time of the interview. They were first diagnosed with BC in 2013, primarily stage 1 or 2. Table  1 presents the sample characteristics at the time of the interview.

Coding trees

During medical and occupational rehabilitation, BCSs employed different coping strategies, classified as either approach- or avoidance-oriented coping. Approach-oriented coping involved problem-focused coping strategies of seeking information , active coping , seeking instrumental support , and suppression of competing activities and emotion-focused strategies of self-control , seeking emotional support , and comparing . In avoidance-oriented coping, BCSs employed the strategies of distancing , denial , and seeking alternative rewards. We also analyzed the contextual factors of coping strategies to gain a better understanding of coping behavior and associated factors. The theoretical foundation for the investigation of contextual factors is based on the work of Mehnert et al. [ 31 ] in which contextual factors associated with return to work of CSs were studied. We identified contextual factors in the health, healthcare, work-related, and personal domains. Figure  1 presents the approach- and avoidance-oriented strategies and associated contextual factors.

Coping strategies used by breast cancer survivors and associated contextual factors during medical and occupational rehabilitation. Note. The associated contextual factors are shown in brackets after the coping strategies

Approach-oriented coping

Problem-focused coping.

Seeking information was identified as a problem-focused strategy employed by BCSs to cope with their illness during rehabilitation. The use of this strategy is motivated by existing information needs and promoted by participating in an oncological rehabilitation program. BCSs sought information regarding long-term adverse effects, future perspectives toward the cancer, and means to have a positive impact on the prognosis. Interviewees found it helpful to receive information from other BCSs who had more time since their diagnosis or had a cancer relapse, for example, participant 3 (P3) in an inpatient rehabilitation program:

“There were also a lot of people there who had fallen sick again. And that’s something EVERYONE is afraid of, right? And then you got to hear, how it was developing now, what are their chances? You didn’t know how the disease was progressing, right? I thought it was good.” —P3

Seeking information helped normalize the interviewees’ experiences, gain a clearer picture of the future disease course, cope with worries, and create a sense of control and self-efficacy.

Active coping is an attempt for active rehabilitation posttreatment, including exercise, healthy eating, participation in therapies (e.g., lymph drainage, physiotherapy), informative meetings, psychological counseling, and willingness to “do whatever it takes” to rehabilitate. It often manifests as participation in organized inpatient rehabilitation programs and was reported by interviewees who were informed about the possibility of active rehabilitation (e.g., in a rehabilitation program), who were motivated by a supportive social environment, and who experienced poor health posttreatment. Women who had physical impairments considered it more necessary to actively engage in rehabilitation than those with subjective good health status, as explained by P12 speaking about her motivation to participate in a rehabilitation program:

“actually the physical condition. Rather than the mental or psychological state because I had so many side effects from the chemo, I was not mobile at all and always felt tired. That was really the aspiration [sic]. ” —P12

Active coping is also employed for occupational rehabilitation to cope with discrepancies between job requirements and an impaired capacity to work because of adverse treatment effects. It involves making adjustments actively, such as incorporating recovery time in the work routine or openly communicating about the illness to workers and employers. Interviewees with high job requirements as well as social support and understanding from colleagues/employers reported using active coping. This strategy also includes seeking a new job when the current position becomes incompatible with rehabilitation and was reported in connection with performance pressure as well as the lack of support and understanding at the workplace.

Seeking instrumental support is defined as seeking of support from family and friends who care for the household or interviewees’ children to enable active rehabilitation. Many interviewees sought instrumental support for continuing health problems and “inexplicable” treatment-related symptoms. They consulted rehabilitation clinic physicians and other healthcare providers (e.g., osteopaths, acupuncturists) as well as self-help groups for instrumental support. Interviewees who perceived a lack of medical support and felt devalued and neglected by physicians during treatment used this coping strategy, as reported by P6 about healthcare deficits that motivated her to seek instrumental support in a rehabilitation clinic:

“I already noticed that I was in pain, that it was indefinable and all a mystery and my doctors actually always told me that it doesn’t exist, that the pain will go AWAY again. So they were actually negating everything or talk me into it. And I was really hoping to find someone there in the treatment center who would help me in a really HONEST way.” — P6

Seeking instrumental support also affected occupational rehabilitation and helped overcome discrepancies between job demands and impaired work capacity. Therefore, during return to work, interviewees sought support from colleagues/employers who undertook certain tasks to relieve them. Another manifestation of instrumental support is progressive reintegration, which enables employees to gradually increase their working hours after sick leave. Interviewees reported seeking instrumental support in connection with poor health posttreatment, high job requirements, as well as understanding and support from supervisors and colleagues.

Suppression of competing activities is defined as suppression of activities competing with self-care to focus on rehabilitation and recovery time. During medical rehabilitation, this strategy especially manifests as suppression of family duties and was reported by interviewees with children in the household and family responsibilities, as described by P19, an inpatient rehabilitation participant:

“I was really focused on myself there. I did [n’t] miss my family either. That was good, I can say now that I was happy to get rid of them (laughs). And because I also had the freedom to think about things myself.” — P19

Suppression of competing activities also occurs in the context of occupational rehabilitation, during which work obligations are adapted for impaired work capacity and health conditions posttreatment. This work subordination manifests as reduced work time, changes in work scope, stronger focus on work/life balance, and job changes. Suppression of work in favor of health activities was reported in connection with the long-term adverse effects of treatment (e.g., fatigue, joint pain), high job requirements, and support and understanding in the workplace, as reported by P19 about making adjustments due to reduced work capacity posttreatment:

“I’m also really grateful to my boss at the time, we agreed that I’d be working successfully again after my reintegration, but basically for a period of two years I’d be doing a job in which I was no longer exposed to maximum stress. And I wouldn’t have been able to do the job anyway anymore because with a job like that, you don’t know when you go to work in the morning, how long the day will be and what the day will bring. That means I wouldn’t have been able to do the job under those conditions any more—i.e., with the background and in the physical condition I was in when returning to work.” — P19.

Furthermore, financial security, particularly with married status, and having flexible/self-determined work times due to self-employment or leading positions were associated with need-oriented adaptation of work obligations in favor of health aspects. Other factors in this coping strategy are fear of cancer recurrence and a subjective theory of illness in which work stress is perceived as the cause of the cancer.

Emotion-focused coping

Seeking emotional support —particularly from fellow patients in the context of rehabilitation programs or self-help groups—is a strategy employed by many of the interviewees. Being with patients who had similar experiences made the interviewees feel understood, normalized their own feelings and perceptions, and provided them with an opportunity to express their feelings. Interviewees reported seeking emotional support from fellow patients as they did not want to burden their personal social environment or they had little social support at home. During medical rehabilitation, the interviewees sought emotional support from professionals (e.g., psychooncologists, psychotherapists, and physicians) to cope with the emotional impact of their diagnosis and its consequences. Emotional support is also sought for the psychological burden of occupational rehabilitation, particularly for emotional distress when work return is impossible due to impaired capacity or another reason, specifically to cope with uncertainty regarding the occupational future and challenges of a new job. This context especially includes feeling unable to transparently communicate about the cancer at the new workplace and dissimulation, leading to external expectations for high performance and resulting in overexertion and work overload. This association is described by P8 who started a new job posttreatment and sought emotional support:

“after I went back to WORK, I felt like I was having like a panic attack. I couldn’t really explain it. It was also like that while I was working. And nobody at the new job knew what was wrong with me. There were two or three situations, I can remember, where I had to struggle with myself. And then I discussed it with my gynecologist. And we thought about how to deal with it. Whether it might make sense to seek psychotherapeutic support in some way.” — P8

Self-control is an attempt to regulate one’s emotion, be strong, and not let negative feelings affect one’s behavior. This strategy positively affects rehabilitation because it helps overcome reluctance, such as participation in oncological rehabilitation while wishing to stay at home with the family. Self-control is used during occupational rehabilitation to support return to work and regain normalcy despite not feeling emotionally or physically prepared. Interviewees who used self-control were those who reported more serious health issues posttreatment and those who returned to work during treatment.

Comparing is a strategy based on downward comparisons with fellow patients, particularly in the context of inpatient rehabilitation. This strategy helped the interviewees accept their health condition and led to feelings of thankfulness and luck compared with others, as described by P12:

“There were, of course, other patients there who were going through something similar. And then you were able to see that things could always be WORSE, right? That’s always a consolation or motivation somehow.” — P12

Avoidance-oriented coping

Distancing is an attempt to draw attention away from being ill, to remove oneself from the “sick” role, and to separate from emotions related to cancer. This strategy is motivated by a desire for normalcy and wish to move beyond cancer.

Regarding medical rehabilitation, distancing includes avoidance of rehabilitation programs and of fellow patients. Distancing was reported in connection with a milder diagnosis by interviewees concerned about being burdened rather than supported by fellow patients. Thus, subjective good health facilitated this strategy.

Distancing also plays a pivotal role in occupational rehabilitation. Returning to work helps draw attention away from cancer and creates normalcy, especially if the job is positively connoted as a source of joy and self-worth. Distancing manifests as a work return during treatment, work return without progressive reintegration, and workplace avoidance of the issue of illness. Distancing is promoted if the BCS is externally perceived as recovered or healthy (e.g., new job colleagues are unaware of the cancer, workplace members do not discuss illness). This association is illustrated by P2 who returned to work during treatment and spoke about her colleagues’ support:

“And because I then took on some OTHER tasks, the two colleagues I joined in the office turned out to be two young men, and men take things differently to women anyway, right? They don’t talk about it [the illness] much at all, which made it EASIER for me because I didn’t come to work to explain all sorts of details about chemotherapy; rather, when you’re there, you’re there and men deal with this more objectively. And they really made the beginning easy for me.” — P2

Distancing from the sick role at the workplace was reported to be associated with self-employment, having a leading position, and having financial obligations (e.g., paying off debt).

Denial refers to disclaiming physical impairments and symptoms and overestimating one’s fitness and work ability to regain normalcy and move beyond cancer. Thus, it leads to refusal of organized medical or occupational rehabilitation programs and return to work with the same prediagnosis workload, resulting in physical and occupational overload. In retrospect, interviewees were able to reflect on denial, as noted by P3:

“So looking back, I think I wasn’t yet 100% ready for work. I pretended I was, right? I have quite got my head around it, right? There were still things that needed to be done somehow. So it’s hard to explain now, in retrospect. If you’d have asked me back then: ‘Yes, I’m back again in top form’, right?” — P3

This strategy was reported in connection with a milder diagnosis, external overestimation of health status, high job requirements, and starting a new job posttreatment, leading to perceived incompatibility with the sick role. External assessment by physicians or family may promote denial, as noted by P17:

“Of course, I’d also ask the doctor if it was okay [to go to the football match]. And then they said “Yes, if you feel OK, why shouldn’t you go, right?” Yes. And then I went with the others. … and that then set everything off, of course. It was all too much, of course. But I didn’t see it like that at all myself. So I didn’t realize at all at myself, how sick I actually was. And how weak I actually am. …I didn’t even notice that I was doing so much above and beyond the strength I had. And that was the reason why I didn’t do any rehab either. Because I thought No, you’re not that sick. Then, at the hospital, a doctor said “Yes, sometimes it’s not good either, because there are a lot of people there who really are in a poor shape. And then you let yourself get dragged down even more, psychologically.“… And I didn’t realize that at all, that something actually could have been done.” — P17

Seeking alternative rewards is an attempt to direct one’s attention away from the cancer and toward a source of positive feelings, such as joy and appreciation. Alternative rewards include vacation and positive activities such as enjoying culture and nature. This strategy helps recovery from disease and treatment. Interviewees who reported using this approach were those who refused inpatient rehabilitation and who had a milder diagnosis, resulting in subjective good health posttreatment. Seeking alternative rewards also comprises engagement in voluntary work, associated with reduced work capacity posttreatment. Voluntary work provides an opportunity to “give back” within the BCS’s capacity and to make them feel useful and appreciated.

This study investigated the coping processes of BCSs during rehabilitation and analyzed contextual factors. It was found that the interviewees used different coping strategies, classified as approach- or avoidance-oriented coping. The classification of coping strategies was based on the taxonomy by Roesch et al. developed for patients with prostate cancer. To the best of our knowledge, we only found one taxonomy in literature for categorizing coping strategies, specifically for patients with BC and BCSs [ 15 ]. Kvillemo et al. suggested a taxonomy that categorizes coping strategies at a higher level into engagement coping, comparable to approach coping, disengagement coping, comparable to avoidance coping, and miscellaneous coping strategies. Engagement coping is further divided into primary control coping, which includes strategies to change the stressor or related emotions, and secondary control coping, which pertains to strategies that facilitate adaptation to stress. Both taxonomies are very similar at a higher level; however, Roesch’s model was preferred over Kvillemo et al.’s model for the categorization of coping strategies owing to its simplicity.

During medical rehabilitation, coping behavior mainly targets cancer management and its physical and emotional consequences, whereas coping strategies in occupational rehabilitation focus on overcoming discrepancies between job requirements and current work capacity, either by problem-focused coping with suppression of competing activities or avoidance such as denial.

The challenge for BCSs in balancing their disease and job demands posttreatment has also been described by Hiltrop et al. [ 32 ]. These authors found that BCSs perceive conflicts between cancer management and other life demands, including work. To cope with conflicting demands, BCSs tend to make sacrifices to the detriment of work [ 32 ]. These findings are consistent with our results regarding the coping strategy of suppression of competing activities.

Coping strategies encompass both dispositional and situational aspects, and dispositional tendencies can influence situational coping behavior [ 33 , 34 ]. Thus, both aspects likely play a role in the coping processes investigated in this study. As we sought to understand how BCSs cope with consequences of the cancer during a specific phase of the cancer journey, we focused more on the situational aspects of coping. It is likely that coping strategies vary across the different phases of the cancer journey, each presenting unique challenges [ 35 , 36 , 37 ]. The results provide knowledge about a specific coping during the rehabilitation phase, which is characterized by the challenge for BCSs in processing the preceding phases (diagnosis, acute treatment) while simultaneously reintegrating into social roles and normalcy.

We also analyzed the contextual factors of coping in the health, healthcare, work-related, and personal domains. Regarding health-related factors, our results indicate that poor health and long-term adverse effects (e.g., fatigue) posttreatment promote approach-oriented coping. Contrarily, avoidance-oriented coping is associated with a milder diagnosis, resulting in subjective good health posttreatment. The results indicate that during rehabilitation, physical and mental impairments necessitate active and problem-focused coping; conversely, the absence of major health issues enables BCSs to distance from the sick role and promote avoidance-oriented coping. As avoidance can reduce chances for adequate rehabilitation, a long-term negative impact on the quality of life or work may be expected, as reported in previous studies in which avoidance- versus approach-oriented coping in cancer patients was associated with lower quality of life as well as worse physical and psychological health [ 10 , 12 , 14 ]. However, it should also be noted that in some cases, the decision to not participate in rehab or engage in other forms of active coping may be based on a realistic assessment of one’s own state of health and performance and does not always represent an avoidance-oriented coping strategy.

In addition to the interviewees’ self-perception regarding their health status posttreatment, external perceptions of others played a role in coping behavior. Avoidance-oriented coping was associated with relativizing medical opinion and being perceived as recovered or healthy by colleagues/employers. Thus, external assessment overestimating the health of BCSs may promote avoidance-oriented coping (e.g., an employer offering promotion during treatment) and may be the result of avoidance-oriented coping (e.g., a BCS’s self-distancing from cancer).

Our findings indicate an association between coping style and participation in an oncological rehabilitation program. Interviewees who employed approach-oriented coping strategies were more likely to participate in a rehabilitation program. In addition, the context of a rehabilitation program enabled the use of certain approach-oriented coping strategies, such as comparing. Therefore, participating in oncological rehabilitation may represent active coping with physical and emotional consequences of the cancer and be a contextual factor that facilitates approach-oriented coping. Notably, BCSs in Germany who wish to apply for early retirement due to cancer must first undergo rehabilitation. Furthermore, in this case, participation in rehabilitation represents an active coping behavior to deal with the illness. Simultaneously, avoidance-oriented coping seems to be a barrier to rehabilitation program participation. This finding is consistent with the results of other studies [ 38 , 39 ]. Deck et al. [ 40 ] analyzed the reasons for the nonuse of oncological rehabilitation of CSs, the most frequent being desire for normalcy, distance from the cancer, and avoiding fellow patients.

Healthcare deficits, such as existing information needs and perceived lack of medical support, were associated with approach-oriented coping strategies such as seeking information and instrumental support. Our findings indicate that approach-oriented coping may mitigate the impact of healthcare deficits, which is supported by Ahadzadeh and Sharif [ 41 ] who observed a moderating effect of approach-oriented coping on the negative association between information needs and quality of life in patients with BC.

Regarding work-related contextual factors, our findings suggest that support and understanding in the workplace promote problem-focused coping (e.g., seeking support from colleagues) to overcome discrepancies between job demands and work capacity. Thus, a supportive work atmosphere may be a facilitating factor in work return and contribute to successful occupational reintegration. Jin and Lee [ 42 ] supported this assumption as they found a positive effect of workplace social support on the quality of work life among CSs who returned to work. Hiltrop et al. [ 43 ] reported a positive association between the social capital of the workplace , which describes workplace-related aspects such as trust or common values [ 44 ], and BCSs’ satisfaction with their occupational development 5–6 years after the diagnosis.

Other contextual factors associated with coping behavior are self-employment or a leading position in the workplace. Both facilitates suppression of competing activities to adapt work life to health-related needs, such as making time for rehabilitation sports during the work day or reducing work hours. This association may be explained by the possibility of scheduling working times more flexibly and autonomously. Simultaneously, avoidance-oriented coping such as distancing was reported in connection with self-employment or having a leading position. These findings are consistent with those of other studies that demonstrated an association between self-employment and the opportunity to flexibly work with an earlier return to work for CSs [ 45 , 46 ]. In addition to flexible working hours, this association may be explained by financial necessity and a perceived responsibility for clients and employees, making it more necessary to distance from the sick role.

Regarding personal factors, our findings suggest an association between approach-oriented coping and social support. The presence of a supportive social environment may promote an active coping style (e.g., by motivating the BCS to participate in rehabilitation). At the same time, approach-oriented coping is employed to cope with a perceived lack of social support, such as seeking emotional support from fellow patients. Another contextual factor is financial status. Financial security, often associated with being married, allowed interviewees to suppress work activities in favor of health aspects, such as by reducing work time. Contrarily, financial obligations (e.g., debt) promoted avoidance-oriented coping strategies, such as distancing. Financial security may thus be a facilitating factor for rehabilitation, whereas financial obligations may be a barrier to the rehabilitation process.

Study limitations

Our study results provide a better understanding of the challenges, coping behaviors, and contextual factors of rehabilitation after BC. Several study limitations must be considered when interpreting these results. Because of the qualitative approach, the generalizability of the results is limited. This especially applies to the associations observed between the contextual factors and coping behavior of BCS. The study samples consisted of female BCSs who were employed before diagnosis and did not include male CSs or other tumors. Because all interviews were conducted in Germany and in the context of the specific German system of rehabilitation, the experiences of BCSs may differ from those in other healthcare systems. The interviews were conducted 5–6 years after diagnosis; thus, effects of recall bias are possible. However, the rehabilitation phase after cancer may be a salient life experience that reduces the memory effects.

Clinical implications

This study provides in-depth insights into the coping process of BCSs during rehabilitation. The results indicate that BCSs employ approach- and avoidance-oriented strategies to cope with their cancer during rehabilitation. As both strategies are helpful in the short term to cope with the physical and emotional consequences of the cancer, healthcare and psychosocial personnel should respect BCSs’ coping strategies while also being aware of the potential long-term negative impact of avoidance-oriented coping on the rehabilitation process. Health and psychosocial personnel in inpatient and outpatient settings (e.g., cancer counseling centers) should speak openly to BCSs about their coping behavior and inform them about the possible long-term risks of avoidance-oriented coping. To support BCSs in coping with their illness more flexibly, information needs (e.g., regarding rehabilitation programs) should be reduced and fears (e.g., being burdened by fellow patients during rehabilitation) should be addressed. The findings regarding contextual factors for coping may help screen BCSs in inpatient and outpatient settings for disadvantageous circumstances (e.g., financial obligations, starting a new job posttreatment) and to support those engaged in a rehabilitation process. Furthermore, increasing employers’ awareness of the challenges of returning to work after cancer may positively impact the occupational rehabilitation of BCSs. The literature shows that there is a lack of interventions aimed at sensitizing employers and coworkers to the needs of CSs and improving communication, thereby supporting the professional reintegration of CSs [ 47 , 48 ].

Data availability

The datasets generated and/or analyzed during the current study are not publicly available due to the patient consent form but are available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to thank sincerely all participants of the B-CARE study.

B-CARE was funded by the German Statutory Pension Insurance (grant number 8011—106—31/31.128).

Open Access funding enabled and organized by Projekt DEAL.

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Paula Heidkamp, Kati Hiltrop & Nicole Ernstmann

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University Hospital Bonn, Center for Integrated Oncology, Bonn, Germany

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University of Cologne, Faculty of Human Sciences & Faculty of Medicine and University Hospital Cologne, Institute of Medical Sociology, Health Services Research and Rehabilitation Science, Chair of Quality Development and Evaluation in Rehabilitation, Cologne, Germany

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Contributions

Nicole Ernstmann and Christoph Kowalski supervised the B-CARE study. Paula Heidkamp and Kati Hiltrop collected B-CARE data. Paula Heidkamp performed data analysis. Paula Heidkamp wrote the first draft of the manuscript. Kati Hiltrop, Clara Breidenbach, Nicole Ernstmann, Christoph Kowalski, Franziska Geiser, and Holger Pfaff discussed the results and commented on the manuscript.

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Correspondence to Paula Heidkamp .

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Ethical approval.

The University of Bonn Ethics Committee of the Medical Faculty approved this study (number: 316/18). All methods were carried out in accordance with relevant guidelines and regulations.

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Association between sociodemographic factors and health beliefs related to breast cancer screening behavior among Northern Thai women: a hospital-based study

• Surin Jiraniramai 1 , 2 ,
• Kanokporn Pinyopornpanish 1 , 2 ,
• Nahathai Wongpakaran 3 ,
• Chaisiri Angkurawaranon 1 , 2 ,
• Victoria L. Champion 4 , 5 ,
• Imjai Chitapanarux 6 ,
• Wichuda Jiraporncharoen 1 , 2 &
• Tinakon Wongpakaran 3  

Scientific Reports volume  14 , Article number:  7596 ( 2024 ) Cite this article

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• Health services
• Public health

Early diagnosis of breast cancer is crucial for reducing mortality rates. The purpose of this study is to determine the impact of demographics/social determinants of health on beliefs about the practice of self-breast examination, using mammogram and ultrasound in the context of breast cancer screening among Thai women in a hospital-based setting for implying program planning and future research. A cross-sectional study was conducted in two health centers in Chiang Mai Province from August 2021 to December 2021, involving 130 Thai women ages 40 to 70 years. Data were collected by a survey using a questionnaire to gather sociodemographic information, and health beliefs about breast cancer and screening behavior utilizing the modified Thai version of Champion's Health Belief Model Scale (MT-CHBMS). Descriptive statistics, t-tests, ANOVA, and linear regression models were employed for examining association between sociodemographic factors and health beliefs about the practice of self-breast examination (BSE), using mammogram (MG) and ultrasound (UTS). Health insurance schemes were associated with Benefit-MG, Barrier-BSE, Barrier-MG and Barrier-UTS subscales. Additionally, monthly income was associated with Barrier-MG and Barrier-UTS subscales. The most common barriers reported were “embarrassment”, “worry”, and “takes too much time”. To enhance breast cancer screening in Thailand, program planning and future research should focus on health insurance schemes, especially women with social security schemes, as they may be the most appropriate target group for intervention.

Introduction

Female breast cancer is the most commonly diagnosed cancer, with approximately 2.3 million new cases and 685,000 deaths reported in 2020 1 . It is the leading or second leading cause of female cancer-related deaths in 95% of countries worldwide 2 . In 2022, breast cancer in Thailand accounted for 38,559 cases 3 , making it the most prevalent female cancer, and accounting for 32.64% of the top five cancers in the northern region of Thailand 4 . This region has been predicted to have the highest age-standardized incidence rate (ASR) and proportion of female cancer cases by 2025 5 . However, early diagnosis and treatment can significantly reduce breast cancer mortality rates and improve women's overall health 6 .

Globally, high-income countries have adopted mammography as the standard screening method for early diagnosis of breast cancer, which helps reduce rates of advanced and fatal breast cancer 7 . In contrast, low to moderate-income countries, including Thailand 8 , 9 , 10 , often rely on breast self-examination (BSE) due to its insufficient mammography resources, although it is considered less reliable 11 , 12 , 13 . Therefore, it is recommended that women regularly and accurately perform BSE and consult with their physicians, who might recommend mammography and/or ultrasound if a lump is found 9 . It's important to note that BSE alone is not an effective method for reducing breast cancer mortality 14 . However, a recent population-based study of 1,906,697 women participating in a breast cancer awareness program in Thailand reported that women who regularly practiced BSE had better survival rates compared to non-practicing women. Additionally, a significantly higher proportion of smaller tumor sizes and earlier stages of breast cancer were observed in the group that regularly performed BSE. This positive outcome was attributed to the strong collaboration between village health volunteers and the use of BSE record booklets. Village health volunteers played a vital role in reminding women to perform BSE consistently, while the BSE record booklets helped women accurately follow the instructions and document their BSE practices 15 . Many countries of low to moderate-income countries have BSE practice as the first line screening because it is easy, convenient, private safe and no specific equipment requirement. Its purpose is to make women familiar with both the appearance and feel of their breasts as early as possible, so that they will be able to easily detect changes in their breast 13 , 16 . The more practice of BSE, the more empower women health 8 , 13 , 17 Based on these evidence, initial BSE is deemed appropriate for Thailand as a low to moderate-income country. The practice of BSE among women is influenced by their knowledge and beliefs about breast cancer and screening methods 17 .

In Thailand, the current guidelines for breast cancer screening 18 include breast cancer screening according to age. For ages 20–39 years old, it is recommended that breast self-examination should be performed once a month. Women between 40 and 69 years should be examined by a doctor annually. If abnormalities are identified, a mammogram will be scheduled. For the age of 70 years old and over, mammography for breast cancer screening should be weighed in terms of benefits and risks based on individual’s life expectancy and preference. However, in the voluntary case of populations who wish to have breast cancer screening by mammogram in the first place, recommendations for screening have been added that are similar to those recommended by the American Cancer Society. This recommendation was caused by public health policy and public finance management in Thailand.

In some resource-limited areas, breast ultrasound has been proposed as a possible alternative for mammography in breast cancer screening because it is portable, less expensive than mammography, and versatile across a wider range of clinical applications. The use of ultrasound as an effective primary detection tool for breast cancer may be beneficial in low-resource settings where mammography is unavailable 19 . Furthermore, according to the findings of a multi-center randomized trial comparing ultrasound vs. mammography for screening breast cancer in high-risk Chinese women, ultrasound was superior to mammography for screening breast cancer in this group 19 . In Thailand, mammography is not available in most rural areas. Similarly, Thai women, like Chinese women, have smaller and denser breasts than Western women 20 . Additionally, ultrasound yields less pain or discomfort than a mammogram, which is one of the main problems preventing women from breast cancer screening. 21 .

In real-world practice, BSE is not widely adopted among most Thai women. From secondary data of the 2007 Health and Welfare Survey that comprised 18,474 women aged 20 years and older and the 2009 Reproductive Health Survey that comprised 26,951 women aged 30 to 59 years show that only 18.4% of women practice monthly BSE 21 , indicating a low level of knowledge and awareness about breast cancer and the importance of BSE, mammography, and ultrasound screening that are the steps for increasing diagnosis of breast cancer. Before planning effective interventions to motivate the use of these screening methods, it is important to understand Thai women's knowledge and beliefs about breast cancer screening. Previous studies have shown that the Health Belief Model is a reliable and valid tool for measuring individuals' knowledge and beliefs about breast cancer and screening methods 22 . This model predicts the behaviors of people who take action to prevent, screen for, or control illness conditions based on their personal beliefs or perceptions about a disease 23 . Champion's Health Belief Model Scale (CHBMS) is the first and most widely used tool in the literature across continents, countries, cultures, and ethnicities to measure women's beliefs about breast cancer screening 8 , 24 , 25 , 26 , 27 , 28 , 29 .

The CHBMS comprises six main constructs: susceptibility, seriousness, benefits, barriers, health motivation, and confidence (self-efficacy). This scale has also been developed to assess perceived benefits and barriers of BSE and mammogram screening 25 , 26 , 27 , 29 , 30 , 31 . Recently, a modified Thai version of Champion's Health Belief Model Scale (MT-CHBMS) 32 incorporated ultrasound items for breast cancer screening. The primary reason for this addition is that ultrasound can effectively detect small and dense tissue tumors, particularly in younger Asian women who tend to have denser breast tissue compared to Western women 19 . In terms of advanced technology, techniques such as artificial intelligence (e.g., deep-learning-enabled clinical decision support systems) and classification of ultrasound images have demonstrated superior accuracy in detecting breast cancers compared to various screening tools currently available 33 , 34 . The MT-CHBMS has been found to be valid and reliable among Thai women 32 . This scale can be comparing perceived benefits and barriers of BSE, mammogram and ultrasound screening from associate predictors of sociodemographic factors. These predictors could be implying the program design for increasing breast cancer screening.

Numerous studies have demonstrated the significant impact of sociodemographic factors on women's breast cancer screening behaviors, with results varying across cultures and values. For instance, research conducted in Middle Eastern countries revealed notable associations between age, title, giving birth, BC screening in the last 6 months, BSE training, chronic disease, mental illness, and BSE practice 35 . Conversely, a study in a similar cultural context showed that BSE and mammography practices among women were influenced by the only level of their knowledge about breast cancer 36 . In an African country, a study found significant associations between income status, marital status, age of first childbirth in the family, and perceived susceptibility, health motivation, convenience, perceived benefits, and self-efficacy for BSE 37 .

Despite these findings, there is currently a lack of information regarding the health perception of Thai women, the scope of their health beliefs, and how demographics/social determinants impact these beliefs. Additionally, these results have been integrated to plan for detecting and managing for breast cancer in primary care of hospital that is the one of strategic in Thailand’s sustainable development goals 38 , 39 . Therefore, the objective of this study is to determine the impact of demographics/social determinants of health on beliefs about the practice of self-breast examination, using mammogram and ultrasound in the context of breast cancer screening among Thai women in a hospital-based setting for implying program planning and future research.

Study design and participants

A cross-sectional study was conducted in Chiang Mai province, Kingdom of Thailand, from August 2021 to December 2021. One hundred and thirty participants recruited with convenience sampling method for the study, consisting of women from two health centers: Maharaj Nakorn Chiang Mai Hospital, located in an urban area, and San Pa Tong Hospital, situated in a rural area. A comprehensive description of the development of the MT-CHBMS has been previously published 32 .

Inclusion and exclusion criteria

The inclusion criteria for the study were as follows: individuals between the ages of 40 and 70 years (the recommended age for mammograms), no prior history of breast cancer or any other types of cancer, and not currently pregnant or breastfeeding. The exclusion criteria included individuals who were unable to communicate effectively due to language barriers and those who expressed unwillingness to complete the questionnaires.

Sample size

Sample size is calculated based on the following criteria.

Anticipated effect size ( f 2 ) was 0.15 (small). The desired statistical power level was 0.8

The number of predictors was 5. Therefore, the minimum required sample was 91. We recruited 130 participants for this study, indicating that it was sufficient.

The data collection tools

To collect data at the outpatient clinic, the researchers gathered socio-economic information by structured interviewing. The questions included items such as age, religion, marital status, education level, healthcare insurance schemes (including the three main public health insurance schemes: government or state enterprise officer, social security scheme, and universal coverage scheme), income, and residential area. Then paper questionnaires were provided to all participants. Prior to completing the questionnaires, all participants provided written informed consent.

The questionnaire addressing beliefs was the MT-CHBMS. The CHBMS was translated into Thai, validated by a panel of experts, back translated, modified by adding content about ultrasound for screening breast cancer, and pretested. Confirmatory factor analysis was used with a sample of 130 Thai women aged 40 to 70 years old. The scales were measured with an ordinal scale using a five-point Likert type 1: “Strongly disagree”, to 5: “Strongly agree”. Each subscale can be used independently. In the case of overall assessment of the awareness of breast cancer and screening methods, the total score can be adopted but the questions concerning barriers must be reversed before summing up.

The MT-CHBMS’s Cronbach’s alphas values were acceptable, ranging from 0.74 to 0.93 for the scales)and valid(Content validity using the CVI index from 3 experts showed that the average Item-CVI was 1.00, all factor loading coefficients in the confirmatory factor analysis were significant(p < 0.001) and ranged from 0.413 to 1.029) tool for measuring the Health Belief Model related to the practice of breast self-examination (BSE), as well as investigating attitudes towards mammograms and ultrasounds 32 . The confirmatory factor analysis results of the CHBMS and MT-CHBMS. Each item had sufficient factor loadings (estimated coefficients) on the designated factor. All factor loading coefficients were significant ( p  < 0.001) and ranged from 0.413 to 1.029. The fit statistics were assessed to demonstrate how well the CFA model fitted the data. For the model MT-CHBM: chi-square = 2488.868, df = 1879, chi-square/df = 1.324, TLI = 0.961, CFI = 0.964, and RMSEA (90% CI) = 0.050(0.045–0.055). Except for the motivation subscale, 21 pairs of error terms in each subscale of T-CHBMS and 23 pairs of error terms of MT-CHBMS were correlated. All these error terms suggested a high correlation between items and became the potential sources of the model misfit.

The questionnaire consisted of 64 items distributed among 10 subscales: susceptibility (5 items), seriousness (7 items), benefits of BSE (6 items), barriers to BSE (6 items), benefits of mammogram (6 items), barriers to mammogram (5 items), benefits of ultrasound (6 items), barriers to ultrasound (5 items), confidence (11 items), and health motivation (7 items). All items were formatted using an ordinal scale with a 5-point Likert scale response: 1 = "Strongly disagree," 2 = "Disagree," 3 = "Neutral," 4 = "Agree," and 5 = "Strongly agree" for positive statements. Each subscale can be utilized independently. However, when conducting an overall assessment of awareness regarding breast cancer and screening methods, the total score may be used. It's important to note that questions pertaining to barriers must be reversed before summing up the scores.

Statistical analysis

The data were analysed using Stata version 15.0. Descriptive statistics, including mean, standard deviation (SD), frequency, and percentages, were used to describe the data. Internal consistency of the items within the health belief subscales was assessed using Cronbach's alpha. The association and comparison of items within the health belief subscales and across other variables were analysed using t-tests, analysis of variance (ANOVA), and linear regression models.

Ethical approval and consent to participate

This study was conducted in accordance with the Declaration of Helsinki and under the review and approval of the Institutional Research Ethics Committee of the Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand (No. FAM 2564-08138) and Sanpatong Hospital Ethics Committee (No. SPT/REC 012/2564). All procedures were conducted following the relevant institutional guidelines and regulations.

Distribution of sociodemographic factors of women (n = 130)

The sociodemographic characteristics of the 130 participants are presented in Table 1 . The average age of the participants was 52.33 years (SD = 7.28). The majority of participants were single (61.54%). About 37.69% of the participants had attained a college-level education, while 51.54% had a monthly income exceeding 10,000 Baht (270 US dollars). Additionally, 41.54% of the participants had health insurance schemes through government or state enterprise officers.

Distribution statistical data and Cronbach’s alphas for MT-CHBMS

Table 2 presents the mean ranged from 2.46 to 4.35 and SD ranged from 3.56 to 8.00. The overall Cronbach's alphas for the health belief model subscales were found to be within an acceptable range (0.70 or higher), indicating good internal consistency 40 .

Comparison of sociodemographic factors with MT-CHBMS

Table 3 presents the results of the statistical analyses conducted on various sociodemographic factors and their associations with the Health Belief Model subscales.

Participants with education less than secondary school exhibited higher scores in the Seriousness subscale compared to other education level groups ( F  = 3.44, p  = 0.035). Participants with a college educational level had higher scores in the Barrier-BSE subscale compared to other education level groups ( F  = 5.32, p  = 0.006).

In terms of monthly income, participants in the lower 10,000 Baht income group demonstrated higher scores in the Seriousness subscale compared to the more than 10,000 Baht income group ( t  = 2.43, p  = 0.017). Conversely, the more than 10,000 Baht income group had higher scores in the Barrier-BSE and Barrier-UTS subscales compared to the lower 10,000 Baht income group ( t  =  − 2.71, p  = 0.008 and t  =  − 2.64, p  = 0.009).

Participants with health insurance schemes through government or state enterprise officer schemes exhibited higher scores in the Barrier-BSE and Barrier-UTS subscales compared to other groups ( F  = 8.50, p  = 0.001 and F  = 6.85, p  = 0.002). Additionally, participants with health insurance schemes through government or state enterprise officer schemes and those covered under the universal coverage scheme had higher scores in the Barrier-MG subscale compared to the social security scheme group ( F  = 5.94, p  = 0.003).

Multiple linear regression model of MT-CHBMS

Table 4 presents the results of multiple linear regression analysis. None of the factors were found to be significant associated with of Seriousness subscale. However, health insurance schemes were found to be a significant associated with of the Benefit-MG and Barrier-BSE (β m  =  − 2.48, P = 0.023 and β m  =  − 3.38, P = 0.008, respectively). Both monthly income and health insurance schemes were significant associated with of the Barrier-MG and Barrier-UTS (β m  = 2.65, P = 0.008, β h  =  − 3.11, P = 0.002 and β m  = 2.49, P = 0.013, β h  =  − 3.40, P = 0.001, respectively).

BM= item from benefit to mammogram, BARB = item from barrier to breast self-examination, BARM = item from barrier to mammogram, BAU = item from barrier of ultrasound.

Comparison of monthly income and health insurance schemes with the significant subscales of MT-CHBMS

To delve deeper into the specifics, each subscale item, including those related to the benefits and barriers of mammograms, breast self-examination, and ultrasound, was compared among different monthly income groups and health insurance schemes using t-tests and ANOVA analyses (Table 5 ). For the Barrier-BSE subscale, the group with an income of 10,000 Baht or more demonstrated higher scores in Barrier-BSE compared to the less than 10,000 Baht income group across the BARB1 (funny), BARB3 (embarrassing), and BARB5 (unpleasant) items. Additionally, participants with health insurance schemes through government or state enterprise officer schemes exhibited higher scores in Barrier-BSE compared to other groups across all BARB (1–6) items.

Regarding the Barrier-MG subscale, participants with health insurance schemes through government or state enterprise officer schemes had higher scores in Barrier-MG compared to other groups across the BARM1 (worry), BARM2 (embarrassing), and BARM3 (take too much time) items.

In terms of the Barrier-UTS subscale, the group with an income of 10,000 Baht or more demonstrated higher scores in barrier-UTS compared to the less than 10,000 Baht income group across the BAU1 (worry), BAU2 (embarrassing), and BAU5 (cost too much money) items. Additionally, participants with health insurance schemes through government or state enterprise officer schemes had higher scores in Barrier-UTS compared to other groups across the BAU2 (embarrassing), BAU3 (take too much time), and BAU4 (painful) items.

The objective of the study was to investigate differences in beliefs related to breast examination among various sociodemographic variables in Thai women, and the results have confirmed their presence.

Using multiple linear regression analysis with the MT-CHBMS, the results indicated several findings. Health insurance schemes were associated with Benefit-MG, Barrier-BSE, Barrier-MG and Barrier-UTS subscales. Additionally, monthly income showed associations with the Barrier-MG and Barrier-UTS subscales. The most common barriers reported by participants were feeling “embarrassed”, “worry”, and feeling that it “takes too much time”.

Unlike population-based studies, the current study reveals a distinct finding: health beliefs were not associated with age, marital status, and education. This contrasts with findings from other related studies, such as those involving Turkish and Iranian women, where age, marital status, and education were significantly correlated with health beliefs scales. 41 , 42 .

Interestingly, our study observed that distinct income groups were associated with varying outcomes in the Barriers-MG and Barriers-UTS subscales. Notably, there is a dearth of similar literature available for direct comparison. However, Kirag and Kizilkaya et al. 35 reported correlations between income levels and Benefit-BSE, Barriers-BSE, Self-efficacy, and Benefit MG, while Altunkurek and Hassan Mohamed 37 also identified a relationship between income status and the Susceptibility and Health Motivation subscales. The connection between lower income and barriers to BSE is not easily explained. It is possible that there are intermediary variables requiring further investigation.

According to the Health Belief Model, perceived barriers have consistently been identified as the most influential predictor in various studies for practicing BSE and mammography 43 . Recent studies have also shown that perceiving more benefits, having higher confidence, and experiencing fewer barriers are positively associated with BSE practice 16 , 44 , 45 . Similarly, perceiving more benefits and fewer barriers is positively associated with mammography 44 . In this study, it was found that the social security scheme associated with Barrier-BSE, Barrier-MG and Barrier-UTS. In addition, the social security scheme had lower scores than the government or state enterprise officer and universal coverage scheme in the barrier to BSE, barrier to mammogram, and barrier to ultrasound subscales. It is to note that the government or state enterprise officer scheme beneficiaries benefit from a higher level of healthcare coverage compared to the other two schemes. It offers a high level of coverage and includes access to government hospitals and medical facilities. This scheme beneficiaries typically have access to a comprehensive range of medical services, often with little or no out-of-pocket expenses. The scheme provides coverage for both routine healthcare and specialized treatments, including access to government-run healthcare facilities. The social security scheme members often enjoy relatively comprehensive healthcare benefits, and the quality of care is generally good. However, it is limited to formal sector employees and their dependents, which means that informal sector workers and those not covered by formal employment arrangements are not eligible. The universal coverage scheme aims to provide equitable access to healthcare for all, emphasizing the principle of social justice. The scheme may have limitations on specialized or high-cost medical treatments, and there may be variations in the quality of care among different facilities.

The impact of the healthcare scheme type on barriers to BSE, MG, or UTS may be influenced by numerous factors. Nevertheless, the results suggests that women who have health coverage through the social security scheme may benefit from targeted interventions to improve detection. Evidence for program planning should be implement in health insurance schemes groups such as health education, skill training and confidence in performing for BSE, reminders to perform BSE, regular use of BSE record booklets 15 , 46 .

One of the general barriers observed in this study is the lack of knowledge and awareness of breast cancer among the participants, as evidenced by their low scores in the Susceptibility, Seriousness, and Confidence scales. Knowledge is identified as the most influential barrier affecting the engagement of participants in BSE, particularly in low to middle-income countries and rural areas where resources are limited 47 . Participants in this study perceived their ability to perform the BSE technique as low, indicating a lack of knowledge or a lack of regular practice. Susceptibility refers to participants' perception of their chances of being at risk for a disease. In this study, participants perceived their chances of having a risk or disease as low, indicating a potential lack of knowledge regarding the risk factors of breast cancer, such as young age, no family history of cancer, and the absence of breast lumps. Seriousness pertains to participants' perception of the severity of the consequences associated with the disease. In this study, participants may perceive breast cancer as not causing pain, exhibiting no symptoms or signs, and not posing a significant threat. This suggests a lack of knowledge or the use of defence mechanisms such as denial or rationalization, similar to behaviours observed in smokers and alcohol drinkers 48 , 49 . Consistent with many Thai studies, interventions focusing on health education and skill training for BSE are recommended to address these knowledge gaps 17 , 21 , 46 .

One of the most common barriers to early screening detection identified in this study is the feeling of “embarrassment” and “worry”. Similar to Amin MN et al. 50 , this study conducted a hospital survey. The feeling of embarrassment can be considered a cultural barrier, where women may feel too embarrassed to have their breasts examined by a male doctor. This cultural aspect can hinder their willingness to seek medical attention for abnormalities. Worry, on the other hand, is associated with feelings of anxiety. Women may experience worry related to breast lumps, the potential consequences of breast cancer, and concerns about health professionals and healthcare facilities. Additionally, the perception that screening “takes too much time” can be a deterrent. Women may feel that they are too busy, have limited time, or believe that they lack sufficient time to perform BSE and undergo screening procedures 47 . Interventions should focus on problem-solving approaches and aim to improve healthcare services in order to overcome barriers faced by the participants. By addressing these barriers and concerns, healthcare providers can create a more supportive and comfortable environment for women to engage in early screening and detection practices. Apart from the issue of “embarrassment”, “worry”, and “takes too much time”, which should be considered as one of the barriers to BSE, mammograms, and ultrasounds, there could be other contributing factors. Future research should incorporate qualitative studies to explore additional causal factors influencing the practice or non-practice of BSE, as well as the utilization or non-utilization of mammograms and ultrasounds. Additionally, it is recommended to compare interventions using a before-and-after study design involving the three main public health insurance schemes: government or state enterprise officer, social security scheme, and universal coverage scheme. This examination is necessary to identify effective interventions for women within each health insurance scheme who may face different barriers.

Participants in this study are to be more empowering their health. They have the highest score of Health Motivation and comparing Benefit-MG and Benefit-UTS more than Benefit-BSE. Conversely, Barrier-BSE when comparing Barrier-MG and Barrier-UTS is inverse. This is show that they would like to take investigate accuracy screening tools more than their manual. As health practitioners’ perspective of Thai study would like to drive a policy of national cancer act to enable women’s rights for accessing standardized screening tools 10 .

Evidence for planning and future research

There is associated between a monthly income and perceived Barriers-MG and Barriers-UTS. This predictor may be sensitive and difficult to approach regarding their monthly income when implementing intervention strategies targeting MG and UTS promotion. However, there is health insurance schemes which associated with Benefit-MG, Barrier-BSE, Barrier-MG and Barrier-UTS subscale. Also, health insurance schemes in the social security scheme is the predictor of perceived Barrier-BSE, Barrier-MG and Barrier-UTS. Specifically, the perceived barriers subscale can help identify the problems of implementation. Furthermore, attitudes toward BSE, mammograms, and ultrasounds can be compared in terms of their benefits and barriers. Such comparisons can yield valuable insights for the development of targeted interventions and approaches aimed at increasing breast cancer screening among Northern Thai women in a hospital-based setting. The design of programs and future research should take this evidence into account during implementation. Future research could employ a before-and-after study design, integrating health education and skill training for BSE, and incorporating qualitative studies to explore the additional causal factors influencing the practice or non-practice of BSE, using or non-using mammogram/ultrasound. Moreover, investigating how to improve healthcare services to ensure women's satisfaction would be beneficial.

Strength and limitations

This study is the first research project known to utilize the MT-CHBMS to study the association between sociodemographic factors and health beliefs of breast cancer and screening behaviors. Additionally, the inclusion of new items related to ultrasound in the MT-CHBMS holds promise for the assessment of breast cancer beliefs among Thai women with dense breast masses and the potential integration of advanced technologies such as artificial intelligence in the future.

However, it is important to acknowledge the limitations of this study. Firstly, the cross-sectional design employed cannot establish causal relationships between beliefs and screening practices. Secondly, the results may not be generalizable to the entire population due to the selection of participants from a single geographic area and hospital setting in Northern Thailand. Thirdly, convenience sampling may cause these study results to only generalize to this research's sampling group. Fourthly, small sample size may cause low statistical power, increased error rate, and less precise information. Fifthly, structured interviews may be subject to interviewer or social desirability bias. Sixthly, no external validation, e.g., concurrent validity, was conducted along with the construct validity. Test–retest reliability and predictive validity were not examined and should be included in future research. Lastly, certain factors such as family history of breast cancer and other breast masses were not specifically excluded from the study, which could potentially influence participants' beliefs regarding breast cancer and their practices related to screening methods.

This study marked the first use of the MT-CHBMS to investigate the association between sociodemographic factors and health beliefs related to breast cancer screening. The findings provide evidence for program design and future research aimed at increasing breast cancer screening among women in Northern Thailand in a hospital-based setting. By successfully implementing the interventions, the ssocial security scheme represents the most targeted interventions can serve as role models for other health insurance schemes and contribute to enhancing the effectiveness of screening among women.

Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

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Surin Jiraniramai, Kanokporn Pinyopornpanish, Chaisiri Angkurawaranon & Wichuda Jiraporncharoen

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All authors contributed to this study’s conceptualization and methodology. Validation, S.J., K.P.,V.L.C., N.W. and T.W.; Formal analysis,S.J.,K.P.,T.W.,N.W.and C.A.; investigation, all.; data curation, S.J., C.A.;The original draft was written by Surin Jiraniramai and reviewed and edited by all authors. Resources, S.J.,K.P.,C.A.,W.J.,and T.W.; supervision, T.W. and N.W.

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Jiraniramai, S., Pinyopornpanish, K., Wongpakaran, N. et al. Association between sociodemographic factors and health beliefs related to breast cancer screening behavior among Northern Thai women: a hospital-based study. Sci Rep 14 , 7596 (2024). https://doi.org/10.1038/s41598-024-58155-y

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Meeting goals/purpose, target audience, preliminary schedule, executive committee, program planning committee.

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• Certificate of Attendance/CME Certificate

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• Proof of Attendance
• SABCS Meeting News

This Symposium is designed to provide state-of-the-art information on the experimental biology, etiology, prevention, diagnosis, and therapy of breast cancer and premalignant breast disease to an international audience of academic and private physicians and researchers.  

The scientific program consists of formal lectures by experts in clinical, translational, and basic research, selected slide and poster presentations, forums and case discussions. The official language of the symposium is English. Simultaneous translation is not provided

This international symposium is directed primarily towards academic and private physicians and researchers involved in breast cancer in medical, surgical, gynecologic, and radiation oncology, as well as patient advocates and other appropriate health care professionals. We anticipate 10,000+ attendees from more than 102 countries.

Meeting Location 

We are very pleased to announce that the San Antonio Breast Cancer Symposium will take place in 2024. The Symposium offers attendees the unique opportunity to participate in person in San Antonio, Texas or virtually. The dates will be December 10-13, at the Henry B. Gonzalez Convention Center, 900 E. Market Street, San Antonio, TX 78205 USA.

The Preliminary Schedule is currently being finalized. Please continue to monitor sabcs.org for future updates. 

Carlos L. Arteaga, UT Southwestern, Harold C. Simmons Cancer Center, Dallas, TX, Co-Director Mark Bonnen, UT Health San Antonio MD Anderson Cancer Center, San Antonio, TX Margaret Foti, American Association for Cancer Research, Philadelphia, PA David Gius, UT Health San Antonio MD Anderson Cancer Center, San Antonio, TX Virginia G. Kaklamani, UT Health San Antonio MD Anderson Cancer Center, San Antonio, TX, Co-Director Kate Lathrop, UT Health San Antonio MD Anderson Cancer Center, San Antonio, TX (ex-officio) Dean Post, American Association for Cancer Research, Philadelphia, PA (ex-officio)

Financial Disclosure Information

As an ACCME-accredited CME provider, UT Health Science Center San Antonio must ensure that its CME activities are independent of the control of commercial interests. All speakers and planning committee members for the UT Health Science Center San Antonio sponsored programs are expected to disclose (prior to the activity) all “financial relationships” in any amount occurring within the past 24 months. Disclosures are then reviewed to identify any "relevant" financial relationships that create a conflict of interest. (“Relevant” financial interest or other relationships can include such things as grant or research support, employees, consultants, major stockholders, members of speaker bureau, etc.)

The UT Health Science Center San Antonio and a planner of SABCS 2024 with no financial relationships with ineligible companies will review all financial disclosure information for all speakers, facilitators, and planning committee members; and determine and resolve all conflicts of interests. 

All financial relationships have been reviewed and mitigated.

Certificate of Credit & Certificate of Attendance

To claim credits for the 2023 San Antonio Breast Cancer Symposium, you must complete the session evaluations and the overall program evaluation. After you have claimed your credits, you will be able to download your certificate of credit and/or certificate of attendance.

Surveys are open now and you will be able to claim your credit until January 31, 2024, at 11:59 p.m. If you do not need to claim credit but need proof of attendance, you will still need to complete the overall program evaluation. You will then be able to download your certificate. 

Accreditation 

The UT Health Science Center San Antonio is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. 

The UT Health San Antonio School of Medicine designates this live activity up to a maximum of 70.50 AMA PRA Category 1 Credits TM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

This nursing continuing professional development activity was approved by Montana Nurses Association, an accredited approver with distinction by the American Nurses Credentialing Center's Commission on Accreditation. This program has been approved for 70 contact hours.  

Maintenance of Certification

Successful completion of this CME activity, which includes participation in the evaluation component and self-assessment requirements, enables the participant to earn Maintenance of Certification (MOC) II points in the American Board of Internal Medicine’s (ABIM), American Board of Surgery’s Continuous Certification (ABS), American Board of Pediatrics (ABP), and the American Board of Pathology (ABPath) program. If you are board certified in these boards, please fill out the MOC II self-assessment. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting MOC II credit. Last day to submit for MOC II credit is January 31, 2024 . 

Patient advocates wishing to apply for financial assistance for the 2024 SABCS should contact the Alamo Breast Cancer Foundation for information and an application. Applications are available online. Please see their website for more information and qualifications. 

Email:   [email protected]

Web: www.alamobreastcancer.org

The William L. McGuire Memorial Lectureship

Dr. William L. McGuire, along with Dr. Charles A. Coltman, founded the San Antonio Breast Cancer Symposium in 1977. The William L. McGuire Memorial Lectureship was established in 1992 to commemorate the significant contributions of Dr. McGuire to oncology medicine. His research played a major role in introducing estrogen receptor assays on breast tumor tissue as a guide to treatment decisions for women with breast cancer. Breast cancer patients everywhere now receive these tests.

The lecturer is selected by the SABCS   McGuire Award Committee from persons through a nomination process. The selection is based on the following criteria:

• Lecturers are respected figures with an international reputation.

• They have made significant contributions to the field of breast cancer research.

• They are known as skilled presenters.

• They present a topic of high current interest related to the diagnosis and treatment of breast cancer or to the study of its underlying   mechanisms.

AACR Outstanding Investigator Award for Breast Cancer Research , funded by The Breast Cancer Research Foundation

The AACR Outstanding Investigator Award for Breast Cancer Research is presented to an investigator no more than 50 years of age whose novel and significant work that has had or may have a far-reaching impact on the etiology, detection, diagnosis, treatment, or prevention of breast cancer.

AACR Distinguished Lectureship in Breast Cancer Research

The AACR Distinguished Lectureship in Breast Cancer Research has been established to recognize outstanding science that has inspired or has the potential to inspire new perspectives on the etiology, diagnosis, treatment, or prevention of breast cancer.      

Abstracts, with the exception of those withheld for SABCS press conferences, will be released approximately one month prior to the symposium. The abstracts withheld for press will be released at the beginning of the day on which the relevant press conference occurs.

Reporters, producers and editors agree to the embargoes and release times stated on the news releases, the news conference schedule and other materials. Failure to abide by the embargoes will result in suspension of credentials, which will affect attendance at the current and future symposia and ability to receive advance press materials.

By allowing an abstract to be included in the 2024 San Antonio Breast Cancer Symposium media outreach program, the Presenter verifies that the abstract’s contents and its conclusions have not been and will not be published or presented in any form to the public before the start of the actual presentation. This includes, but is not limited to, non-embargoed press releases and interviews required by government agencies. Any release of material and specific non-embargoed information prior to the meeting’s embargo date as set forth by the SABCS press office could result in exclusion from the official SABCS press program.

Please see the media page for more information 

King Charles shakes hands, chats with crowd at most significant public outing since cancer diagnosis

LONDON (AP) — King Charles III shook hands and chatted with onlookers after attending an Easter service at Windsor Castle on Sunday in his most significant public outing since being diagnosed with cancer last month.

The king, dressed in a dark overcoat and shiny blue tie, smiled as he made his way along a rope line outside St. George’s Chapel for about five minutes, reaching into the crowd to greet supporters who waved get-well cards and snapped photos on a chilly early spring day. “You’re very brave to stand out here in the cold,” Charles told them.

“Keep going strong,” one member of the crowd shouted as Charles and Queen Camilla walked by.

The 75-year-old monarch’s appearance was seen as an effort to reassure the public after Charles stepped back from public duties in early February following an announcement by Buckingham Palace that he was  undergoing treatment for an unspecified type of cancer.

The king has continued fulfilling his state duties , such as reviewing government papers and meeting with the prime minister. But his attendance at a traditional royal event like the Easter service is seen as a sign that he is beginning a managed return to public life. British media reported last week that Charles would slowly increase his public appearances after Easter.

The service itself was smaller than usual as  Kate, the Princess of Wales , is also being treated for cancer and has paused public duties. The princess, her husband Prince William and their children did not attend.

Kate shock’s announcement that she, too, had cancer was made on March 22, after weeks of speculation about her health and whereabouts following major abdominal surgery in February.

Charles’ enforced absence from public life has been a setback for a man who is  eager to put his stamp on the monarchy  after waiting almost 74 years — longer than any previous heir — to become king.

When he succeeded his mother, Queen Elizabeth II, Charles faced the daunting task of demonstrating that the 1,000-year-old monarchy remains relevant in a modern nation whose citizens come from all corners of the globe. After less than two years on the throne, the king is still defining himself with the public as he tries to persuade young people and members of minority communities that the royal family can represent them.

“He knows that being seen by the public and having public goodwill is really what’s at the core of a successful monarchy,’’ royal commentator Jennie Bond told the BBC. “He needs to have that interaction and I think he quite enjoys it, actually.’’

Although the duties of a constitutional monarch are largely ceremonial, the job of being a royal can be exhausting.

Besides the occasional procession in full royal regalia, there are meetings with political leaders, dedication ceremonies and events honoring the accomplishments of British citizens. That added up to 161 days of royal engagements during Charles’s first year on the throne.

The palace has worked hard to keep the king in the public eye — even as he sought to limit contacts to reduce his risk of infection while receiving treatment. Videos of the king reading get-well cards and an audience with Prime Minister Rishi Sunak were released. He also attended a session of the Privy Council, an assembly of senior advisers.

While he skipped a pre-Easter service on Thursday, Charles released a prerecorded audio message in which he expressed his regret at missing an occasion traditionally attended by the monarch.

The king also reaffirmed his coronation pledge “not to be served, but to serve.”

“That I have always tried to do and continue to do, with my whole heart,” he said.

Copyright 2024 The Associated Press. All rights reserved.

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What a Breast Cancer Risk Calculator Can and Can’t Tell You

The actress Olivia Munn credited a simple tool with helping her doctor catch the disease early. But experts cautioned that it can’t give you the full picture.

By Knvul Sheikh and Alisha Haridasani Gupta

This week, the actress Olivia Munn shared that she was diagnosed with and treated for breast cancer last year, and credited a risk calculator with helping her doctor catch the cancer early.

“Ask your doctor to calculate your Breast Cancer Risk Assessment Score,” Ms. Munn urged the public in her post.

Medical experts are enthusiastic about the spotlight on risk calculators, but they caution that the results are only rough estimates and need to be interpreted with the help of a doctor. Here’s what to know.

What do breast cancer risk calculators take into consideration?

About one in eight women will develop breast cancer in her lifetime. But tools like the one Ms. Munn’s doctor used can offer a more personalized picture of an individual patient’s risk.

There are two main calculators: the Breast Cancer Risk Assessment Tool , also known as the Gail model, and the Tyrer-Cuzick Risk Assessment Calculator , also called the IBIS model. Both ask users their age, race, ethnicity, family history of breast cancer, when they first started their periods, and, if they have children, how old they were when they had their first child. All of these factors can influence a person’s risk of breast cancer.

The IBIS calculator also asks for information about an individual’s biopsy history, breast density and the age at which any family members were diagnosed with breast cancer.

The calculators compare a person’s answers with the average for other women from the same age and racial group, and use that to estimate five-year risk and lifetime risk of developing breast cancer.

Although men can also develop breast cancer, the tools calculate risk only for women. The Gail model cannot accurately calculate risk for women with a history of invasive breast cancer or ductal carcinoma in situ or those with mutations in the BRCA1 or BRCA2 genes, which raise the risk of breast cancer, said Dr. Sandhya Pruthi, a breast medicine specialist the Mayo Clinic Comprehensive Cancer Center. Accuracy can also vary for different racial groups. “These things were originally built around women from Western Europe,” said Dr. Otis Brawley, associate director of community outreach and engagement at the Sidney Kimmel Comprehensive Cancer Center.

According to the National Cancer Institute, the Gail calculator may underestimate risk in Black women with previous biopsies and Hispanic women born outside the United States. It may also be inaccurate for American Indian or Alaska Native women, because data about their risks is limited. Black women can ask their doctors about the Black Women’s Health Study calculator , which was developed using data from Black women in the United States.

It’s also essential to make sure that you understand the data required to answer the questionnaires and input it correctly, Dr. Pruthi said. Even small changes in the answers can yield vastly different risk scores. And experts noted that these calculators should be used as part of more comprehensive care, including regular doctor appointments and recommended screenings such as mammograms. They can also be useful for women who aren’t yet old enough to have routine mammograms.

How do you interpret the risk score?

Breast cancer risk calculators should be used as a conversation starter with a health care professional, said Dr. Nancy Chan, an oncologist and director of breast cancer clinical research at NYU Langone’s Perlmutter Cancer Center. Knowing your risk estimate can help you and your doctor discuss whether you might need more frequent mammograms or genetic testing, or whether certain preventive steps might help lower your risk.

“If you are high risk, we actually can do something about that,” she added. Doctors may recommend that women with a high score make certain lifestyle changes — such as exercising more, cutting back on smoking and reducing alcohol intake — or that those with a high five-year risk take medications that can help reduce the likelihood of breast cancer .

However, doctors caution that interpreting your score can be difficult on your own. The difference between the five-year risk score and lifetime risk, in particular, can be hard to understand, Dr. Brawley said.

“One of the things I worry about is that a woman will run the test and come out with lower than average risk for breast cancer — say, lifetime risk of 7 percent — and decide, ‘Oh, then I don’t need to get into a program of routine high quality screening,’” Dr. Brawley said. Other women might get a higher risk score that, if interpreted without other context, may lead to over-testing or unnecessary anxiety.

“You don’t want people to just look at these numbers and get unduly frightened,” said Dr. Steven Woloshin, a professor of medicine at Dartmouth University who has studied overdiagnosis.

A risk score can’t determine whether a person will or won’t develop breast cancer. And it doesn’t say anything about your chances of dying from the disease, Dr. Woloshin said.

Other risk assessment tools are being developed that could help doctors make even stronger predictions in the future, Dr. Pruthi said. “Where we really want to be one day is getting a personalized risk,” she said. “What new information can we add that’s more unique to you?”

Knvul Sheikh is a Times reporter covering chronic and infectious diseases and other aspects of personal health. More about Knvul Sheikh

Alisha Haridasani Gupta is a Times reporter covering women’s health and health inequities. More about Alisha Haridasani Gupta

The Fight Against Breast Cancer

Risk calculators can offer a more personalized picture of an individual patient’s breast cancer risk. But experts warn that the results need to be interpreted  with the help of a doctor.

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