It’s been known for more than 20 years that black women have worse survival rates than white women after a breast cancer diagnosis. Black women are also more likely to be diagnosed with more aggressive forms of breast cancer, which usually require more and more aggressive treatments.
Earlier research suggests that there is some overlap between the concerns of black women and white women after breast cancer treatment, but there are also concerns that are unique to black women.
A study has explored these concerns in-depth and found that medical mistrust is one of the biggest issues faced by black women after breast cancer treatment.
The research was published online on Aug. 19, 2016 by the journal Supportive Care in Cancer. Read the abstract of “Post-treatment problems of African American breast cancer survivors.”
"We know that 21% of African American women with breast cancer don't survive 5 years past their diagnosis, compared to only 8% of Caucasian women," said lead author Andrea Barsevick, Ph.D., R.N., professor of medical oncology at Thomas Jefferson University. "We wanted to explore whether the problems they experience after their first round of treatment might contribute to that disparity."
The first part of the study consisted of eight focus groups with 60 black women who had been treated for breast cancer. The researchers asked the women about the issues they considered most important after treatment.
An idea that came up in every focus group was the issue of medical mistrust. The women were concerned that the information they were given wasn’t as good as the information given to white women, leaving them less prepared to deal with challenges after treatment had ended.
The information gathered from the focus groups was used to develop a survey on post-treatment problems that was sent to more than 1,000 black women in Pennsylvania who had been treated for breast cancer in the past 5 years.
Women were asked to rate more than 20 potential problems such as fatigue, feeling less feminine, or loss of strength as:
- not a problem
- somewhat of a problem
- a severe problem
Nearly 300 women completed the survey.
Half the women reported more than 15 problems and half the women reported fewer than 15 problems.
The researchers grouped the problems into four broad categories:
- emotional problems
- physical problems
- lack of resources
- sexuality problems
Women who were:
- had two or more other medical conditions in addition to breast cancer
- had greater medical mistrust
were more likely to have more severe problems after breast cancer treatment.
Does this mean that these post-treatment problems are being caused by mistrust or that younger women are at greater risk for problems than older women?
“Not necessarily,” said co-author Dr. Amy Leader, assistant professor of medical oncology at the Sidney Kimmel Cancer Center. “The associations aren't causal, but they do show us how much diversity there is within the African American women as a group, and that it will be important to craft different approaches to address the needs of different parts of the community. For example, different types of educational resources may be needed by younger versus older survivors. And for all of them, educational materials and resources should be culturally tailored to African American survivors.”
“Combating cancer disparities in the African American community will take a multi-faceted approach,” said co-author Dr. Patricia K. Bradley, associate professor of nursing at Villanova University. “This research is the first step toward bridging the gap in care after initial cancer treatment is completed.”
“African American survivors have taught us what's important to them,” added Dr. Barsevick. She and her colleagues are now working with a panel of advisers to create a tailored survivorship care plan that includes resources and coping methods addressing the concerns that are most important to African American women.
ALL women -- no matter their age, ethnicity, economic status, or other health concerns -- deserve the best breast cancer care and the best survivorship care plans possible. Any issues that affect care before and after breast cancer treatment should be eliminated.
When your main breast cancer treatment is done, it’s important to focus on what’s now most important: your good health. You have to make sure you get the best ongoing care and live your best life. If you’ve finished breast cancer treatment and your oncologist hasn’t talked to you about a survivorship care plan, it’s a good idea to bring it up at your next appointment. Here are some questions you may want to ask your oncologist:
- Can I get a survivorship care plan in writing that explains all the medical issues I need to consider and tells me which screening tests I need and when I should have them?
- Which doctor should I see for each medical issue?
- If your oncologist recommends that you see a specialist -- a cardiologist for example -- and you’ve never seen one before, you may want to ask for a referral to a specific doctor.
- If there is anything in your survivorship care plan that you don’t understand, ask your doctor or nurse to explain it.
It’s also a good idea to talk to your primary care doctor about your survivorship care plan and ask which parts of it she or he will be responsible for.
Because the idea of survivorship care plans is relatively new, you may have to advocate for yourself to make sure you that get a written plan.