The goals of follow-up care and support for breast cancer survivors are to:
detect potentially treatable, recurrent breast cancer
screen for new primary breast cancer
screen for other cancers (as recommended by surveillance guidelines)
monitor and manage late and long-term treatment effects
address psychosocial and practical issues that may arise as the result of breast cancer and its treatments
A primary concern of follow-up care
is the early detection of potentially treatable, recurrent breast cancer.
A primary concern of follow-up care is the early detection of potentially treatable, recurrent breast cancer. Besides recurrence, patients should be routinely screened for a new cancer that may develop in the preserved or contralateral breast (i.e., a second primary breast cancer). In addition, women who have had breast cancer are at increased risk for developing other secondary cancers due to genetic susceptibilities such as BRCA mutations and/or the effects of cancer treatment, such as the increased risk of endometrial cancer and uterine sarcoma after the use of tamoxifen.12 Follow-up surveillance should address these risks. Ongoing participation from the primary care provider (PCP) helps to ensure patient compliance with recommended guidelines and facilitates a coordinated system of care.3
The medical provider should be experienced in surveillance recommendations and breast exam, including examination of irradiated breasts. A randomized study showed family physicians did an equally good job as oncologists in following women with early breast cancer for recurrences and quality of life issues.4 If follow-up is transferred to a PCP, the PCP and the patient need to be informed of the long-term options regarding adjuvant hormonal therapy for the particular patient. This may necessitate re-referral for oncology assessment at intervals consistent with guidelines for adjuvant hormonal therapy.5
ASCO recommendations for follow-up care and management:
Medical History/Symptom Review: every 3-6 months for the first 3 years after primary therapy, then every 6-12 months for 2 years, then annually. Patients should be educated about symptoms of recurrence.
Physical Examination: every 3-6 months for the first 3 years after primary therapy, then every 6-12 months for 2 years, then annually.
Breast Self-Examination: women should be instructed and should then perform monthly.
Mammograms: annually. First post-treatment mammogram 1 year after the initial mammogram that leads to diagnosis, but patients who have had breast conserving surgery should have their first post-treatment mammogram 6 months after completion of radiation, then annually or as indicated. Patients who have had a mastectomy still require regular mammograms.
Pelvic Examination: annually. Patients who take or have taken tamoxifen should be asked specifically about vaginal discharge or bleeding. Routine endometrial biopsies are not recommended. Longer intervals may be appropriate for women who have had a total abdominal hysterectomy and oophorectomy per CDC guidelines.
For asymptomatic women in good physical condition, ASCO does not recommend:
ultrasound of liver
computed tomography scan (also referred to as computerized axial tomography)
testing for breast cancer tumor markers CA 15-3, CA 27.29, and CEA
complete blood count*
*Some tests, such as complete blood count (CBC), will be routinely performed during regular annual physical examinations.
Screening for other cancers should be done in accordance with recommended guidelines for the general population. Women who have family members with breast, ovarian, tubal, or peritoneal cancer should be screened for referral for genetic counseling in accordance with the recommendations of the US Preventive Services Task Force.6
Risk of Breast Cancer Recurrence
Five Years Post Treatment
The majority of breast cancer recurrences happen within five years of diagnosis, but breast cancer can recur at any time throughout the patient’s lifetime. The overall rate of recurrence for breast cancer survivors (stage I, II, and III combined) who have undergone neo-adjuvant or adjuvant therapy is 11% at five years and 20% at 10 years. Risk of recurrence at five years, by stage, is listed in the table, right.7
Generally, risk of recurrence increases
with increases in primary tumor size and number of positive lymph nodes.
Risk of recurrence increases with lymph node involvement at diagnosis and with increases in primary tumor size and number of positive lymph nodes. Other prognostic factors include: (1) histologic grade; (2) hormone receptor status; (3) HER-2/neu (also known as HER2) expression; and (4) molecular subtype. Cancers of higher grade, that are estrogen-receptor positive, that overexpress HER2, or that have a molecular classification of HER2 or basal type are more likely to recur.7
For women who undergo breast conserving surgery, the risk of recurrence is significantly lower for those who receive radiation treatment after surgery than for those who do not.8 To reduce this risk, patients are often treated with adjuvant therapies.
Breast cancer can return locally, regionally, or it can metastasize to distant locations in the body.9 If breast cancer metastasizes, it most commonly spreads to the bone, lungs, or liver. It may also spread to other sites, such as the brain, adrenal glands, ovaries, or elsewhere.
Local recurrence is cancer that recurs in the same location, or close to the same location, as the original cancer. (Local recurrence is possible even after mastectomy, since some breast skin and fat remain.)
Regional recurrence describes breast cancer that has spread beyond the location of the original cancer and nearby lymph nodes, but remains within the chest region.
Distant recurrence is cancer that has metastasized through the lymph system or bloodstream to another region of the body, such as the bone, lungs, liver, or other areas.
Symptoms suggestive of recurrence may include
one or more of the following:
mass in the ipsilateral breast following breast conserving therapy
mass in the chest wall after mastectomy
nipple discharge in treated breast following breast conserving therapy
rash on the treated breast or chest wall
lymph node enlargement
bone pain or tenderness
chest pain, cough, dyspnea
abdominal pain or fullness
changes in mental status
motor or sensory loss
bladder or bowel dysfunction
Symptoms suggestive of recurrence depend upon the type, extent, and location of the cancer, but may include the signs and symptoms listed on the left.1011 A number of diagnostic tests are available for confirmation. In addition to blood tests and imaging studies, a biopsy is usually recommended to be certain of the diagnosis and to check for estrogen-receptor (ER), progesterone-receptor (PR), and human epidermal growth factor receptor 2 (HER2) status.1011
Treatment of Recurrent Breast Cancer
Treatment of recurrent breast cancer
depends upon the initial treatment and the location of the recurrence.
Treatment of recurrent breast cancer depends upon the initial treatment and the location of the recurrence. For women with a local recurrence after initial treatment with lumpectomy and radiation therapy, the standard treatment is a mastectomy. The need for repeat surgical staging of the axilla is controversial if axillary lymph node dissection (ALND) was previously performed. For women who did not undergo ALND, repeat axillary staging with lymphatic mapping and sentinel lymph node dissection (SLND) is recommended.10
For women with a recurrence in the chest wall after an initial mastectomy, treatment is typically surgical resection of the local recurrence (if possible) and radiation therapy (if the chest wall was not previously treated or if additional radiation therapy may be safely administered). If the patient did not previously have ALND, and there is evidence of regional disease, ALND is recommended.11
After local treatment, women with local recurrences should be considered for systemic treatment.1011 Early detection of local and regional recurrence increases the chances for successful treatment. On the other hand, there is no known cure for metastatic breast cancer, although various therapies are effective for prolonging survival and enhancing quality of life. Therapies associated with minimal toxicity, such as hormone therapy, are preferred to the use of cytotoxic therapy whenever reasonable. Some patients may undergo many different treatments for long-term management. For more information, please see National Comprehensive Cancer Network's (NCCN) Clinical Practice Guidelines in Oncology.
Long-term and late treatment effects should be addressed during follow-up care.
Long-term and late treatment effects, also called aftereffects, are of concern and should be addressed during follow-up care. Below are some of the potential aftereffects associated with treatments for breast cancer. Patients should be informed of potential aftereffects related to their individual treatments. They should be told what symptoms to look for, how to reduce risks, and how best to manage any that may occur.112
Chest wall and breast: Surgical procedures and radiation therapy used in the treatment of breast cancer can affect the chest wall and breast. Complications include seromas, benign lumps (fat necrosis), and skin infections. Radiation therapy may result in long-term complications including fibrosis or necrosis.1213
Lymphedema: Breast surgery and radiation can lead to lymphedema. Rates are highest among women who undergo mastectomy with ALND followed by chest wall and axillary radiation therapy. 1415
Musculoskeletal: Breast and lymph node surgery can result in reduced arm mobility and pain which can be exacerbated by radiation therapy. Women treated with an aromatase inhibitor following a five year course of tamoxifen may experience muscle and joint pain. Women using an aromatase inhibitor are also at an increased risk for osteoporosis and fractures.13
Fatigue: Fatigue may persist for years after the cessation of treatment. Persistent fatigue is estimated to occur in 17% to 40% of breast cancer survivors. 1617 Fatigue can be caused from tumor growth, chemotherapy, hormone therapy, targeted therapy, and radiation therapy. It also occurs as a result of anemia, pain, distress, sleep problems, medication, poor nutrition, and lack of exercise. Chronic fatigue severely affects quality of life for breast cancer survivors. Patients should be screened for fatigue at their initial visit and at regular intervals during treatment and follow-up care.1819
Cognitive dysfunction: A common phenomenon after chemotherapy is cognitive impairment, often referred to as “chemo brain.” Impairments may include memory loss and decreased concentration and can significantly impact patients’ functioning and ability to work. Cognitive functioning appears to stabilize within six months after the completion of treatment. The American Cancer Society provides information to care providers and patients seeking help with the management of cognitive symptoms related to cancer treatment.2021
Neurologic: Breast surgery can lead to nerve injury resulting in chest wall pain and/or tingling. Radiation therapy can also cause weakness in the hand or arm. Peripheral neuropathy may develop after adjuvant chemotherapy, particularly with the taxanes. It usually reverses once treatment is terminated but in rare cases is permanent. 14
Pulmonary: Radiation therapy to the breast can result in a persistent cough or shortness of breath, but this appears to be a rare complication.12
Cardiovascular morbidity: Cardiovascular disease can be an aftereffect of radiation therapy, chemotherapy drugs, endocrine therapy, and targeted therapies. The patient’s treatment plan should be reviewed for cardio-toxicity to consider a referral to a cardiologist. 1222
Second cancers: Second cancers associated with radiation therapy, chemotherapy and use of tamoxifen include esophageal, lung, uterine, ovarian, melanoma, soft tissue sarcoma, acute myeloid leukemia, and myelodysplastic syndromes. The development of a second cancer depends upon treatment factors such as type of treatment and genetic susceptibility. 123
Ovarian failure: Premenopausal women who receive chemotherapy have mildly decreased ovarian function. Ovarian failure may also be drug-induced during treatment in order to stop the ovaries from producing estrogen. Menstrual function and fertility usually return within months after treatment is stopped. Some women may have long-term ovarian failure, and the adverse effects can be significant.12
is common for patients to have strong emotions
as a result of their experience with breast cancer.
It is common for patients to have strong emotions as a result of their experience with breast cancer. For some, emotions may be experienced immediately; for others, emotional reactions to the cancer may not surface for months or years.124 Overall quality of life for long-term disease-free survivors of breast cancer is reportedly excellent, but some research suggests that up to 15% of survivors of early-stage breast cancer suffer symptoms of post-traumatic stress disorder as many as 20 years after the completion of treatment.2526 In addition, as many as 29% of cancer survivors suffer from anxiety and depression.1
Many major national cancer organizations, including the Institute of Medicine, the President’s Cancer Panel, and the NCCN now recommend that cancer patients’ social and emotional needs be continually evaluated by oncologists and the PCP. Beginning with the moment of diagnosis, the PCP should assess the patient’s level of distress and should be a resource for referral to information services, support groups, and/or mental health counseling as needed. In addition, the PCP should be prepared to advise consultants of their patient's social and emotional circumstances.12728 Although the need for support services can occur at any time, the end of primary treatment can trigger a unique confusion of feelings that may include both relief and worry. Appropriate psychosocial care at this point in survivorship will help the patient experience long-term, high quality of life and adaptation to surviving cancer.28
Although research into the efficacy of various psychosocial interventions aimed at distressed post-treatment cancer survivors is limited, some interventions have proven to be effective. These include cognitive behavioral therapy, stress management (relaxation and mindfulness), psycho-educational efforts, the promotion of health behavior change, and exercise.28 In addition, the National Center for Complementary and Integrative Health offers information and resources about treatment for anxiety, depression, and emotional distress with complementary approaches such as meditation, massage therapy, mindfulness-based stress reduction, and yoga.
Patients who describe their emotions as overwhelming, patients whose feelings are severe enough to interfere with functioning (for more than a few days), or patients who report any of the following symptoms should be referred for further evaluation to an appropriate specialist:29
thoughts of suicide
inability to eat or sleep
lack of interest in usual activities for several days
Breast cancer and its treatments can
impact a woman's work, insurance, finances, and other practical aspects of her life.
Breast cancer and its treatments can impact a woman's work, insurance, finances, and other practical aspects of her life. The primary care provider is an important resource for patients needing information about groups and organizations that can help with these types of problems. Below are three of the more common practical issues that breast cancer survivors may encounter.
Breast cancer survivors are at risk for employment discrimination in either their present jobs or when applying for a new job. The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination on the basis of disability. Persons diagnosed with cancer are covered under its provisions. Specifically, Title I of the ADA makes it unlawful for any employer with 15 or more employees to discriminate against an employee or qualified applicant because of cancer. Moreover, if cancer or the effects of cancer treatments interfere with a person's work, employers may need to provide reasonable accommodations to allow an employee to perform the essential functions of her job.30 Additional federal laws protecting cancer survivors' employment rights are The Family Medical Leave Act of 1993 and The Federal Rehabilitation Act of 1973.3132 Resources available online include the Job Accommodation Network, the US Equal Employment Opportunity Commission (EEOC), ADA Technical Assistance, and the Social Security Administration. The National Coalition for Cancer Survivorship also offers a comprehensive guide to employment rights for cancer survivors entitled Working it out: your employment rights as a cancer survivor.
Breast cancer survivors may have reasonable concerns about obtaining and keeping adequate health insurance coverage. For a general overview, Health Insurance and Financial Assistance for the Cancer Patient on the American Cancer Society website has many helpful suggestions. The Affordable Care Act, enacted in 2010, expands Medicaid, increasing the percentage of women with health insurance, makes insurance for cancer patients more affordable, and ensures that most insurance plans cover the health care needed by cancer patients. Importantly, health plans are now required to cover people with pre-existing conditions, including cancer. In addition, the law closes the “doughnut hole” in Medicare Part D, ensuring that there will no longer be a coverage gap in Medicare’s prescription drug coverage.
For more information about the impact of the Affordable Care Act on cancer patients, see the American Cancer Society’s brochure The Health Care Law: how it can help people with cancer and their families. Individuals seeking private health insurance coverage can purchase health insurance through health insurance marketplaces during open enrollment periods and may qualify for financial assistance. Enrollment in a marketplace plan can occur online at www.healthcare.gov, which will re-direct to states’ marketplaces if appropriate, over the phone at 1-800-318-2596, in person with a trained counselor (see localhelp.healthcare.gov), or through the mail with a paper application found on www.healthcare.gov. California residents can find information and applications for health insurance at the Covered California website.
The Breast and Cervical Cancer Treatment Program (BCCTP) provides cancer treatment to eligible individuals diagnosed with breast and/or cervical cancer. California residents can receive full scope Medi-Cal coverage through BCCTP if they are under 65, are US citizens or nationals or have documented immigration status, have a gross family income at or below 200 percent of the federal poverty line, and have no other health insurance. Treatment will be covered under this program for the entire duration of the treatment.
Patients who do not meet the requirements for Medi-Cal through BCCTP may still be eligible for state-funded BCCTP. This program includes California residents who are not US citizens or who have unsatisfactory immigration status and those who have health insurance, including share-of-cost Medi-Cal and/or Medicare. Coverage for treatment under state-funded BCCTP lasts 18 months for breast cancer patients and 24 months for cervical cancer patients. For more information about BCCTP, see the California Department of Health Care Services website.
Cancer survivors may also have concerns about disputed claims. The Affordable Care Act gives patients more information and more rights when appealing a claim denial. For information about how to file an appeal to a claim denial, patients can visit How to appeal an insurance company decision.
Breast cancer can cause significant financial challenges for patients and their families. For those with health insurance, varying percentages of their medical expenses will be paid for by their insurance carriers. Women without insurance and women with insufficient coverage may need assistance with finding programs that are able to help with financial concerns.
Patients seeking financial assistance can find potential resources from the National Cancer Institute website (see: Managing Cancer Care). The Patient Advocate Foundation (PAF) offers many resources for finding local assistance with a broad range of needs including housing, utilities, food, transportation to medical treatment, home health care, medical devices, and pharmaceutical agents. CancerCare provides limited grants for certain expenses related to treatment. Likewise, the Patient Access Network Foundation is an independent, non-profit organization dedicated to assisting insured patients who cannot afford the out-of-pocket costs associated with their treatment needs. Some hospitals and medical facilities receive Hill-Burton funds from the federal government to offer free or low cost services. Eligibility is based on income, family size, and availability of a Hill-Burton Facility. (See Additional Resources page for more support resources.)
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