Coping with ‘the new normal’: Breast cancer survivorship as a Black woman

Editor's note: October is Breast Cancer Awareness Month.

By Taayoo Murray

Shenique Hutchinson, a Black wife, mother and registered nurse, completed treatment for triple-negative breast cancer 12 years ago.

But even after more than a decade as a survivor, her husband still changes the television channel at the mere mention of breast cancer. It’s a small example of all the ways that Hutchinson’s life changed after her diagnosis.

Life after cancer treatment can look different from life before cancer — both physically and psychologically. Your body may look and feel unfamiliar. It’s common to have some level of anxiety or fear about cancer returning.

And Black women can experience unique physical and emotional challenges as breast cancer survivors. This means both Black survivors and their families need tools, strategies and support to cope with “the new normal” after treatment ends.

You survived. Now what?

Ideally, no one should face survivorship alone. Social support from friends and family and ongoing medical support from your healthcare team can make a big difference.

Take advantage of your healthcare team.

Typically, comprehensive cancer centers will assess quality of life and emotional well-being throughout the course of the cancer experience.

Eleshia Morrison, Ph.D., L.P., a Mayo Clinic psychologist, believes that it’s important to remind Black women that they can expect this type of emotional assessment.

Your healthcare team can help you navigate emotional and mental health issues that may be related to your cancer, its treatment or the aftermath.

Asking for help from your medical team is difficult for many people, but can be especially hard for some Black women, due to stigma around mental health concerns in the Black community. However, this isn’t always the case: A study of 185 Black women found they believed that mental health problems can have serious consequences and can be controlled with treatment. Most of the women said they would be comfortable talking to a professional about a mental health problem — and 60% wouldn’t be embarrassed about this if a friend found out.

Rely on your loved ones and social network.

Dr. Morrison says that survivors do better physically and emotionally when they have reliable people they can count on. Specifically, there is research on breast cancer survivorship that suggests that having reliable social support is associated with positive health outcomes.

Family and friends should ask what kind of support a survivor wants, Dr. Morrison says.

“It’s important to give women a choice in terms of what forms of help they need, and not make those choices for them based on whatever assumptions we may have,” says Dr. Morrison.

Some women may need more emotional support, such as having space to be vulnerable in discussing fears, worries and concerns about their cancer, treatment or survivorship.

Other women may not want to dwell on their cancer story. For Hutchinson, that meant she wasn’t interested in breast cancer charity events or advocacy.

“Sometimes people say, ‘You should be happy that you’re alive.’ It’s not that I’m not happy that I am alive. But I don’t go to these breast cancer walks. What it felt like to me is like going back, having memories,” explains Hutchinson.

Black women’s quality of life after breast cancer

Most people know that people with breast cancer can experience loss of their hair, loss of appetite, fatigue, nausea and vomiting as side effects of their treatment. But there are also side effects and increased risks of problems that are less visible to the rest of the world. These include hearing loss, heart issues, hypothyroidism, pain, nerve damage known as neuropathy, infertility and sexual dysfunction.

And physical issues can be long-lasting. Twelve years later, Hutchinson still experiences neuropathy in her legs, which causes chronic pain.

One review showed that overall, young Black breast cancer survivors scored lower on various quality-of-life measures — such as depressive symptoms, financial distress and physical well-being — compared with other groups such as older Black survivors, white survivors and young Black women without breast cancer.

As you navigate survivorship, don’t hesitate to reach out to your healthcare team about any of these concerns, including concerns about physical effects, sexual health, fertility or cardiovascular concerns.

Sexual health concerns after breast cancer

Negative sexual health effects are unfortunately very common after breast cancer treatment. For example, adjuvant endocrine therapy (AET) can cause sexual health challenges due to side effects like hot flashes, low libido, vaginal dryness and painful intercourse. Research with Black women with early-stage breast cancer reported decreased adherence to AET because of sexual side effects.

Additionally, some Black women come from cultures that place a lot of emphasis on a feminine identity, fertility and romantic partnerships, which can make sexual health struggles after cancer more difficult to navigate.

It’s important to talk about sexual health concerns with your healthcare team, even if this makes you uncomfortable. In some cases, women may benefit from receiving care from an expert in sexual health such as a gynecologist or certified sex therapist. These professionals can recommend or prescribe treatments and help you find ways to engage in satisfying sexual activity — even if it looks different from before.

To find a certified sex therapist in your state, use the referral directory on the American Association of Sexuality Educators Counselors and Therapists (AASECT) website. Many professionals offer treatment by video appointment, which can make it easier to seek help if you don’t live close to a specialist.

“I would recommend asking new therapists if they have experience working with cancer survivors or other individuals who have experienced sexual health losses due to medical reasons,” says Dr. Morrison.

Fertility concerns after breast cancer

For women in their reproductive years, comprehensive cancer care should include a discussion about fertility for women of reproductive age, ideally before cancer treatment begins.

If your healthcare team doesn’t bring up fertility, you should address this with your team as soon as possible. There may be options to help protect your ability to have children in the future, such as freezing your eggs, known as oocyte cryopreservation. A recent study showed that there was no significant difference between the rates of Black and white women with breast cancer who sought fertility preservation.

Still, some Black women don’t learn about ways to protect their fertility until it’s too late. One small study of young Black breast cancer survivors found that some didn’t remember ever receiving fertility information from their healthcare teams.

This can lead to feelings of loss and grief, Dr. Morrison says, and these can last long after treatment has ended.

“It can be really helpful to talk with a mental health professional or a spiritual leader” to work through these feelings, Dr. Morrison says.

Relationship concerns after breast cancer

Hutchinson, who was 29 years old at the time of diagnosis, was one of the women who did not get reproductive health counseling before she started cancer treatment. But as a registered nurse, she knew that her chances of getting pregnant were extremely low after treatment.

So when a pregnancy test came back positive, it was quite the shock — and a complicated situation. Hutchinson was part of a clinical trial testing the use of metformin to decrease the chance of cancer recurrence. Hutchinson’s pregnancy required her dropping out of the trial or terminating the pregnancy. Her husband wanted to terminate. His priority was giving his wife the best chance of avoiding a recurrence of breast cancer, and he feared fetal abnormalities. Hutchinson decided to continue the pregnancy.

“He told me, ‘If you keep that baby, you’re on your own,'” Hutchinson says.

But Hutchinson’s pregnancy progressed well and Hutchinson’s husband got on board in her eighth month. But she says the discord could have easily ended her marriage.

While Hutchinson’s pregnancy situation was unusual, experiencing a strain on a relationship due to cancer is not. A couple’s therapist, or therapist for you and your partner separately, can help you learn how to provide support for each other, how to communicate effectively with each other and teach you coping strategies.

Heart concerns after breast cancer

One large study found that for Black women with heart disease, the risk of dying from breast cancer was 41% higher than for White women.

It’s not entirely clear why this is the case. Because about 60% of Black women 20 years and older have cardiovascular disease, it’s possible that many women may have cardiovascular disease before breast cancer without knowing it.

Fortunately, your care team can tell you if you are at increased risk of developing heart disease after cancer treatment and can help you make more-informed decisions about treatment options. Cardiovascular risks are associated with certain chemotherapy drugs, radiation therapy to the chest and some targeted therapies. Because Black women are already at elevated risk of developing heart disease, it’s recommended that you speak about your individual risk with your healthcare team to assess your current cardiovascular health and heart disease risk profile.

What survivorship looks like for family members

Breast cancer and its treatment can be brutal on people — and their loved ones. Hutchinson’s husband stopped at his mom’s house to cry and vent regularly before going home. She didn’t hear about this until years afterward.

Even if a family is not closely involved in a patient’s care, they can still be profoundly affected. Anne Cummings, a Black woman and a registered nurse, had a sister who was diagnosed with breast cancer, but withdrew from her family. Her sister later died of breast cancer.

Cummings is left to wonder and hypothesize about her sister’s illness, after also losing her mother to breast cancer.

“My mother I know for sure had ductal carcinoma. My sister I am not sure because she didn’t talk much about it,” Cummings says.

Cancer has the potential to harm family relationships, and family members also can experience a sense of burden, depression, anxiety and stress. In the Black community, these issues are disproportionately compounded by low income and lack of access to quality healthcare.

A note for the future

Over 80% of Black women live at least five years after their initial breast cancer diagnosis. While encouraging, this rate is almost 10% lower than their white counterparts, with racial inequities likely playing a major role.

One large study found that Black women had higher breast cancer recurrence and death rates compared with white women — even after controlling for many factors like the size of the tumor and whether they were treated with adjuvant chemotherapy.

The best strategy to address these higher risks is to follow the medical recommendations of your healthcare team, including taking medications and attending follow-up appointments or testing. Follow-up care is necessary to make sure your cancer has not come back. And receiving good news from these appointments can be reassuring and help to reduce anxiety about recurrence.

“Even though it can absolutely be scary to go to these follow-up appointments, these are really important to support long-term physical and emotional wellness,” says Dr. Morrison.

Learn more

Learn more about breast cancer and find a clinical trial at Mayo Clinic.

Join the Breast Cancer Support Group on Mayo Clinic Connect, an online community moderated by Mayo Clinic for patients and caregivers.

Also, read these articles:

• Facing the mental and emotional challenges of breast cancer as a Black woman
• Cancer survivors: Late effects of cancer treatment
• Cancer fatigue: A common cancer side effect that is different for everyone
• Lymphedema: A lesser-known breast cancer treatment side effect with lifelong impacts
• Caring for your psychological needs as an adolescent or young adult cancer survivor
• 4 things you can do to improve your quality of life after breast cancer
• Regaining sexual health after cancer treatment
• Matters of the heart: How cancer and cancer treatment can affect your heart health

A version of this article was originally published by Mayo Clinic Press.