What We Talk About When We Talk About Being a Breast Cancer Survivor

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 44 percent between 1989 and 2022. 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.

Psychological effects for breast cancer survivors

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.

Physical challenges when living with breast cancer

Breast cancer treatment can have a number of side effects, some seen and some invisible. Here are a few of the more common ones:

Neuropathy, discomfort caused by damage to the nerves, most commonly occurs after chemotherapy and typically affects the hands and feet. It 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 thrivership, 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 quality of life for others). Regardless, this is something to discuss with your care team, as menopause increases the risk of osteoporosis.

Chronic and long-term for breast cancer survivors

Sometimes, breast cancer treatment can have longer lasting effects. But help is available for these conditions, which include:

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 you accordingly.

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

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.

How BCRF-funded research supports those living with breast cancer

• 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, identifying factors that make women vulnerable to depression after breast cancer diagnosis and devising ways to address them. 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.
• 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.
• 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 2021 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, Christine Ambrosone, and the late Arti Hurria).
• 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.
• Dr. Neil Iyengar is developing a multidisciplinary lifestyle intervention care model which provides personalized lifestyle risk assessment and matched intervention plans beginning at the time of breast cancer diagnosis. The ultimate goal is to improve quality of life in thrivership.
• Dr. Norah Henry is addressing bothersome side effects from anti-hormone therapy, which may stop patients from taking the medication. Her team is identifying additional treatments for these side effects so that more breast cancer survivors can better tolerate and keep taking medications that help reduce recurrence while maintaining their quality of life.
• Dr. Mariana Chavez MacGregor is examining factors that may interfere with patients’ ability to complete their care, such as race, ethnicity, living environment, socioeconomic factors, and treatment side effects. Understanding how these factors impact care can lead to the creation of specific plans to improve outcomes, reduce disparities, and help patients have a better quality of life.
• Dr. Ann Partridge is investigating the complex medical and psychosocial problems facing younger women with breast cancer, with a focus on intervention. Using a novel web-based strategy, her study aims to better support and guide younger women with breast cancer, particularly with regard to their symptoms and unique concerns through survivorship.
• Dr. Mina Sedrak is examining one of the most concerning side effects of chemotherapy: accelerated aging. By increasing our understanding of why it happens, his team hopes to develop biology-driven strategies to reverse or stop it, and help cancer survivors not only live longer, but live well.
• Dr. Electra Paskett’s research is focused on the effects of breast cancer and its treatments on functioning among older women. Specifically, she is examining the effects of aging on cognitive and physical functioning among breast cancer survivors compared to women who do not have cancer.

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. This article was updated in February 2026.

Support research that improves life after breast cancer

Living beyond breast cancer often comes with lasting physical, emotional, and cognitive effects. Research focused on survivorship helps address these challenges—supporting not only longer lives, but better quality of life after treatment.

BCRF donations directly fund scientists studying the long-term and late effects of breast cancer and its treatments, including mental health, physical function, and overall well-being. This work helps inform care for people living with, through, and beyond breast cancer.

Ways to help:

• Donate to support research focused on life after breast cancer.
• Start a fundraiser in honor or memory of someone affected by breast cancer.
• Learn how BCRF funds research and how each contribution accelerates progress.

Every contribution helps advance discoveries that improve outcomes and daily life for breast cancer survivors.

Frequently asked questions about breast cancer survivorship