What We Talk About When We Talk About Breast Cancer Survivorship

Introducing a new blog series from BCRF exploring thrivership

This is the first blog in BCRF’s three-part series, Thrivership After Breast Cancer. BCRF is exploring the nuances and realities of breast cancer survivorship: the emotional and physical challenges of the disease, the lingering effects of treatment, the latest in research to improve thrivers’ quality of life, and more. Read part two and part three.

Thanks to early detection strategies and better, targeted treatments, deaths from breast cancer have declined by 42 percent over the last 30 years. This means there are more people living with, living through, and living beyond breast cancer—and navigating what we call “survivorship,” which means different things to different people and is an important aspect of breast cancer care.

So, what is survivorship? To some it means having no signs of breast cancer following treatment. To others, it starts at diagnosis and continues into long-term treatment to decrease the risk of recurrence and metastasis. Still others consider it living with metastatic breast cancer.

At BCRF, we prefer “thrivership,” a term that captures the essence of living with breast cancer. No matter what stage of “thrivership” a person is in, they may experience a range of associated emotional and physical experiences including:

• emotions associated with diagnosis, treatment, recurrence, and/or financial toxicity
• physical reactions to therapies and surgeries
• short- and long-term symptoms after treatment

In the first of BCRF’s three-part series on survivorship and thrivership, we explore several common issues thrivers experience—and spotlight some of the many BCRF-funded projects seeking to improve them.

Short- and long-term psychological effects

While a person’s reaction to a breast cancer diagnosis is as unique as they are, people with the disease commonly experience a mix of emotions: denial, anger, anxiety, sadness, loneliness, acceptance, and even hope. According to the American Cancer Society, one in four cancer patients will suffer from depression.

Many of these psychological symptoms do not neatly end when treatment does. They can even start well after. Some thrivers experience prolonged anxiety and depression after treatment or arising from a fear of recurrence or metastasis. Others experience changes in relationships, insomnia, loss of libido, or acute stress about paying medical bills. For some, these issues come up around particular times like holidays or breast cancer screening and scans (nicknamed “scanxiety”).

A breast cancer journey is different for everyone. Any or all of these feelings are normal, and experts stress the importance of speaking to your health care team—especially if these emotions persist or are impacting your day-to-day life; they can point you to mental health professionals and support services at your doctor’s practice, cancer center, or hospital.

At any stage of treatment and thrivership, your support network of friends and family—or a support group of fellow thrivers—can be an important source of comfort. While, generally, you will stop seeing your breast cancer care team on a regular basis after treatment, that does not mean you cannot go to them if you are having any lingering symptoms, including long-term psychological ones.

BCRF researcher spotlight:

• Among several projects, Dr. Dawn Hershman is conducting studies to improve the adverse effects of treatment by evaluating the initial and continued use of controlled substances for pain, anxiety, and insomnia.
• Drs. Julienne Bower and Steven Cole are examining the biological pathways that cause stress-related symptoms following treatment. They are working to devise interventional methods that can potentially block those pathways and improve the quality of life and length of thrivership.
• Dr. Annette Stanton focuses on understanding and promoting breast cancer thrivers’ quality of life. Specifically, she is identifying factors that make women vulnerable to depression after breast cancer diagnosis and devising ways to address them. In another project, Dr. Stanton and her team are conducting a series of studies that focus on the unique psychological and social issues that specifically affect Black women diagnosed with breast cancer and developing resources for these women to improve their breast cancer care from diagnosis to thrivership.

Post-treatment symptoms/conditions

Neuropathy, discomfort caused by damage to the nerves, most commonly occurs after chemotherapy and typically affects the hands and feet. This can present as a numbness or pain, increased sensitivity to hot or cold temperatures, or muscle weakness in the hands and feet. For some people, the symptoms go away with the conclusion of therapy. For others, it can be severe and may not go away completely.

Thinning hair or loss of hair, also known as alopecia, can occur with certain types of chemo- and radiation therapy, as well as hormonal, targeted, or immune therapies. For many, hair loss is temporary. But, whether mild or severe, it can be traumatic, especially for women. To prepare, talk to your doctor about if, when, and to what degree your treatment strategy can cause hair loss and if there are options to potentially stave off loss, like cold capping (scalp hypothermia).

Lymphedema—an abnormal swelling in the arms, underarms, hands, breast, chest, or back—is a side effect of breast cancer surgery and/or radiation treatment. When lymph nodes are removed or damaged during these procedures, the lymph (clear fluid that circulates the body to remove substances from tissues) cannot circulate properly and builds up.

This may happen gradually, with symptoms beginning prior to swelling including tingling and numbness, achiness, or decreased flexibility in the above areas. If you have these symptoms, it is especially important to discuss them with your doctor, as early treatment is key to decreasing lymphedema.

Treating breast cancer may involve anti-estrogen therapies that, in some women, can lead to unwanted side effects such as sexual dysfunction, changes in libido, and vaginal discomfort. Sexual health is an important aspect of survivorship, and these symptoms are nothing to be embarrassed about. If you’re experiencing any of them, talk to your breast cancer care team.

Like chemotherapy and ovarian suppression therapies, anti-estrogen treatments may also cause menopausal-like symptoms or lead to early menopause in premenopausal women. This is because these treatments affect the ovaries, which produce estrogen, leading to symptoms that mimic menopause including changes in libido, vaginal discomfort, hot flashes, weight gain, and more. These symptoms may be temporary (coinciding with treatment) and vary in severity (manageable in some or negatively impacting the quality of life for others). Regardless, this is something to discuss with your care team, as menopause increases the risk of osteoporosis.     

BCRF researcher spotlight:

• Dr. Charles Loprinzi has led several clinical trials that address and test interventions that may alleviate some symptoms breast cancer patients experience immediately after treatment. He has researched methods to relieve nasal vestibulitis, skin irritation following radiation, chemotherapy-induced neuropathy, and treatment-related heart damage. His recent studies are addressing alopecia and stress-related issues such as anxiety and depression in breast cancer thrivers.
• Dr. Hershman’s team is investigating methods such as compression technology or cryotherapy to prevent the development of chemotherapy-induced peripheral neuropathy.
• Dr. Debra Barton is looking at ways to help thrivers improve their sexual health and regain intimacy with their partners. Her team has identified strategies to improve vaginal symptoms and restore sexual desire and energy. They have also developed interventions to help partners better communicate following treatment and beyond.

Chronic and long-term conditions

Osteoporosis—a weakening of bone strength that occurs with age—can also be a long-term and late-effect complication from breast cancer treatments. Whether you will develop osteoporosis following treatment or not depends in part on the density of your bones prior to treatment. Your doctor can discuss how your treatments affect bone loss and can perform a bone density test to assess your situation and treat accordingly.

Cardiovascular issues can be exacerbated by lifesaving breast cancer treatments that are cardiotoxic and that can lead to blocked arteries, heart valve issues, abnormal heart rhythms, or fluid build-up around the heart. It is important to discuss your risk of cardiovascular disease with your doctor prior to treatment. Some of the ways you can take care of your heart also help cardiovascular symptoms after treatment: eating a healthy diet, getting regular exercise, and not smoking.

Post-mastectomy pain syndrome (PMPS) is persistent pain caused by nerve damage in the breast or underarm following a mastectomy or breast-conserving surgery. Symptoms include pain and tingling or numbness in the chest, armpit, arm, or shoulder. The American Cancer Society estimates that 20 to 30 percent of patients will develop PMPS following surgery.

Because of pain, many patients will limit the range of motion in their arms. Therefore, it is important to discuss any symptoms with your doctor. It is also important to note that PMPS may affect Black women to a greater extent than white women. This may be due to breast cancer being diagnosed at later stages in Black women and subsequently requiring surgery over a larger portion of their breast.

Some patients report Cancer-Related Cognitive Impairment (CRCI) soon after breast cancer treatment, but symptoms can persist for years after. People with CRCI experience memory problems, difficulty making decisions, and trouble planning and performing tasks.

CRCI is often referred to as “chemobrain” or “chemofog,” as it was originally associated with chemotherapy. But this is not completely accurate since it has been documented after other cancer treatments, including radiation and hormonal therapies. CRCI can impair daily functions, work productivity, childcare, and other responsibilities.

It is important to be aware of CRCI as a potential condition following breast cancer treatment—and not ignore any of these symptoms. A discussion with your doctor can help delineate CRCI from other symptoms such as depression, insomnia, or fatigue and determine the best course of action (such as neuropsychological evaluation) if the condition persists. 

BCRF researcher spotlight:

• Dr. Sandra Ryeom is investigating how chemotherapy can damage cells in the heart and eventually cause cardiac complications long after breast cancer treatment. Her team found that the cells lining the blood vessels in the heart are very sensitive to chemotherapy and are determining the biological root of this sensitivity. Their findings have the potential to inform ways to protect blood vessels and, by extension, the heart from chemotherapy-induced damage.
• Dr. Patty Ganz is a leader in research focusing on the experiences of breast cancer thrivers after treatment. Among her many areas of study, she has conducted research on “chemobrain”/CRCI and the trajectory of adverse cognitive effects on breast cancer thrivers. In a recent review, Dr. Ganz summarized the state of CRCI research and contributions from her own research and that of others, including fellow BCRF investigators (Drs. Joseph Sparano, Kathy Albain, George Sledge, Christine Ambrosone, and the late Arti Hurria).
• Among the reasons that Black patients often experience more severe acute and chronic pain compared to white patients may be related to racial and ethnic bias among medical providers, but experts also think there are differences in the way people from different cultures think and talk about their pain. Dr. Demetria Smith-Graziani is testing the hypothesis that patients’ mistrust in medical providers and perceived discrimination affects pain outcomes for Black women after a mastectomy.
• Dr. Hershman has developed a digital health platform to directly communicate with patients. Her team is now testing its use to help patients obtain adequate pain control or to promote adherence to medication that can help metastatic breast cancer patients who have chronic pain.
• Dr. Vered Stearns is examining the connection between obesity and breast cancer in women with a history of the disease. Her team is developing behavioral and medical interventions to promote weight loss that can decrease breast cancer recurrence and improve thrivers’ quality of life.
• Dr. Melinda Irwin is conducting research to better understand the mechanisms mediating the effect of exercise and weight loss on breast cancer prognosis. She is developing more personalized lifestyle prescriptions that have the potential to lower thrivers’ risk of breast cancer recurrence and mortality. 

BCRF is proud to support research that directly addresses the important emotional and physical issues surrounding breast cancer patients to help them not only live after breast cancer—but live well.

The bottom line: Only you can communicate how you are feeling, both emotionally and physically. Whatever the symptoms, whether they come right after breast cancer treatment or persist long after, it is important to consult with your breast cancer care team about your options.

Read part two of BCRF’s Thrivership After Breast Cancer series—on the unique challenges of young and elderly breast cancer survivors—here. And read part three—a BCRF researcher’s advice for navigating life after breast cancer—here.