This entry was written by one of our volunteers, Phyllis Allen. Phyllis is a volunteer for our Survivors’ Helpline.
When I first started volunteering at LBBC, I became aware of an alarming statistic. When African-American women are diagnosed with breast cancer, they have a 38-40% higher mortality rate. If you add in the fact that triple negative breast cancer is more difficult to treat and more prevalent among African-American women (39% are diagnosed), the survival rates start to frighten women of color. As an African-American breast cancer survivor, all of the stats above concern me.
When I was diagnosed with breast cancer, I decided to learn everything I could about the disease so I could talk to my medical team about my treatment and my chances of survival. There is still the perception in the African-American community that being diagnosed with breast cancer is a death sentence. Women are afraid of losing their breasts and worry about the side effects of chemotherapy, I.E., losing one’s hair. Some women are just afraid of any surgery, period. All of this leads to some African-American women delaying seeking diagnostic tests and treatment. As a result, African American women are less likely to be diagnosed at an early stage of breast cancer. Once we seek treatment at a later stage of the disease, it’s harder to get a positive outcome, and thus feeds into the perpetuation that a diagnosis of breast cancer is a death sentence.
My grandmother was diagnosed with breast cancer in January and passed away the following February. Granted this happened in the late 1950s, but a number of families have relatives who have waited too long to seek treatment. I took it upon myself to discuss my diagnosis and treatment with friends, family and colleagues so that we all could learn about breast cancer and hopefully, would be less fearful about the outcome. Women of color must be encouraged to be more proactive in preventing a late breast cancer diagnosis. This means conducting breast self-examinations every month and having regular mammograms depending on your age and family medical history. While women complain that a mammogram is painful, it’s a lot easier to deal with that discomfort instead of having to tell your family that you have breast cancer.
African-American women must be able to afford health insurance that encourages preventative care. As women we tend to put our needs last, but if we’re sick we can’t attend to the needs of our loved ones. It also means providing information to hospitals, health clinics, medical care and social service professionals who come in contact with African-American women who are at risk for and/or have been diagnosed with breast cancer. LBBC provides a lot of literature that people can read and understand so that they can have meaningful discussions with their health care team.
One of the more distressing things I have learned as a volunteer for LBBC is that a number of African-American women tell me that they refuse thetreatment plan recommended by their medical teams. The main complaint is usually that they want a more holistic treatment of their breast cancer. I always ask the women if they have a medical degree and, if they don’t have one, I insist that they speak to their medical team about their concerns. More and more physicians are listening to their patients’ requests for a treatment that is not so toxic, but it must be discussed in terms of each woman’s case. No two women are alike in every respect. I strongly believe that knowledge of treatment options is key to the woman committing to finishing the treatment plan that she and the medical team decide is best.
Bottom line: if there is mutual respect between medical care professionals and the women they serve, I think it could make a dent in the higher mortality rate of African-American women diagnosed with breast cancer.