More than 3.5 million people in the United States are living with a breast cancer diagnosis. Despite their large number, patients often report they do not receive appropriate follow-up care after completing treatment—and the situation is worsening, with pandemic-related delays in care affecting approximately half of breast cancer survivors.

The American College of Surgeons Commission on Cancer updated its 2020 standards to include a dedicated survivorship program team to develop appropriate services such as treatment summaries, care plans, and screening and preventative services. The standards also recommend targeted strategies to address the many physical and psychosocial effects associated with a cancer diagnosis. Organizations such as ONS, the American Society of Clinical Oncology, and National Comprehensive Cancer Network (NCCN) have evidenced-based guidelines for supportive and disease-specific survivorship care. Each survivor needs a comprehensive care plan individualized to their personal health, family history, and type of treatment.

Late and Long-Term Effects

Understanding the unique side effects associated with specific treatment types will help nurses to determine relevant recommendations for the care plan. Long-term side effects from surgery include pain, tissue scarring, body image concerns, reduced range of motion, and lymphedema. Radiation side effects vary based on treatment site but include fatigue, skin changes, and lymphedema. Late effects may involve pulmonary changes such as pneumonitis or fibrosis, cardiovascular effects such as cardiovascular disease (for radiation to the chest), and secondary cancers such as sarcomas.

Chemotherapy side effects also vary based on specific agents but generally include fatigue, peripheral neuropathy, fertility, sexual changes, menopausal symptoms, pulmonary toxicity (pneumonitis), and cognitive impairment such as chemo brain. Although less common with chemotherapy, late effects include secondary cancers such as myelodysplasia or leukemia and cardiovascular toxicities such as change in left ventricular ejection fraction from anthracyclines.

Targeted agents have unique side-effect profiles. HER2-targeted agents are associated with cardiac toxicities. Endocrine therapy such as tamoxifen can cause thromboembolism, joint pain, and a small increased risk of uterine cancer. Aromatase inhibitors such as letrozole can lead to hot flashes, joint pain, reduced bone mineral density, and increased cholesterol.

Ongoing Screening and Prevention

Specific patient factors, including personal and family history, will help guide screening and preventative care recommendations for breast cancer survivors. In general, patients receiving an aromatase inhibitor should have a dual-energy X-ray absorptiometry (DEXA) scan every two years to assess for bone mineral density loss. Most survivors should adhere to routine gynecologic exams, especially those on endocrine treatment because of the increased risk for uterine cancer.

Survivors should also follow general screening recommendations for other cancers, such as colonoscopy screening beginning at age 45 and an annual skin examination. Encourage healthy lifestyle behaviors, including regular exercise, smoking cessation, limited alcohol consumption, and sun safety. Dietary recommendations include an emphasis on fruits, vegetables, and whole grains with an aim to reduce fat, processed foods, and red meat.

Sample Breast Cancer Survivorship Care Plan

Examinations

History and physical examination every 3–12 months for the first five years, then at least annually

Annual clinical breast exam

Report any new breast changes.

Imaging

Screen with annual mammography for breast-conserving surgery if stable.

Routine imaging of reconstructed breasts is generally not indicated.

Recommend additional studies as risk or clinical presentation indicate (e.g., magnetic resonance imaging, computed tomography, bone scans).

Labs

Consider routine complete blood counts post chemotherapy.

Order cholesterol testing for those on endocrine treatment.

Tumor markers are generally not indicated for early-stage disease with lack of symptoms.

Additional considerations depending on treatment received

Educate, monitor, and refer for lymphedema management.

Consider left ventricular ejection fraction evaluation with echocardiogram within one year following anthracycline treatment and continue at regular intervals for high-risk individuals.

Disease assessment

Conduct additional evaluation and diagnostic work-up for suspicious symptoms. Educate on the symptoms of disease recurrence or metastatic disease, including headaches, bone pain, palpable mass, lymphadenopathy.

Genetic risk evaluation (obtain regular updates in family history)

Refer patients for genetic screening if they exhibit features that may suggest a hereditary cancer syndrome:

Two or more family members with any type of malignancy

Same type of cancer occurring in several family members

Younger than age 50 at the time of diagnosis

One or more type of cancer in one person

Rare malignancy in more than one family member

Cancer in a set of paired organs (e.g., breasts, kidneys)

Birth defects (e.g, neurofibromatosis type 1)

Ethnicity or race associated with hereditary cancer (e.g., Ashkenazi ancestry)

Psychosocial care

Conduct routine assessment and management of psychosocial concerns (e.g., distress, anxiety, depression, financial toxicity).

Coordination of care

Reestablish routine health maintenance and immunizations with primary care providers and specialists as indicated. Coordinate and communicate the survivorship care plan with the entire healthcare team.

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