This blog is part of a series featuring interviews with patient advocates. This was adapted from an interview with Jamila Kinsey, a BRCA mutation carrier, patient advocate, and volunteer with Praise is the Cure.
My mother was diagnosed with breast cancer in 2013 when she was 69 years old. I’m a nurse, so I was right there supporting her. Every appointment we would go to, I would get all her paperwork and put a file together — because the nurse in me was able to be a healthcare advocate for her. It was kind of tricky at first, because she went to one healthcare center that we weren’t very comfortable with, where there were a lot of delays. I encouraged her to get a second opinion — my mother was very afraid and just wanted someone to help her take care of everything. Ultimately, I was able to connect with a nurse navigator in the Breast Center at Lankenau Medical Center and my mother was able to get in quickly to see a surgeon. She got her care and everything was great.
Fast forward to four years later: in 2017, at age 44, I went in for my annual mammogram. They found something suspicious and wanted to biopsy it. I was soon diagnosed with breast cancer and learned that it was DCIS (ductal carcinoma in situ). Once we found that out, the surgeon immediately said, “OK, let’s do genetic testing.” I thank her all the time for that, because I can’t think that many providers would push for BRCA testing just after hearing that my mom had also been diagnosed. I had a lumpectomy while waiting for the genetic testing results, but my surgeon later thought that she should have waited for the results first. Sure enough, it came back that I have a BRCA2 mutation, which gave me a better idea of what my options were, including bilateral mastectomy surgery, which I decided on. After my surgery and reconstruction was complete later that year, I also decided to go ahead and have my ovaries removed to reduce the risk of developing ovarian cancer. I didn’t have it all done at once, because I was mentally working through the breast cancer diagnosis and treatment. I needed time to process things.
Now my sister Tamika — my fraternal twin — had a mammogram a few weeks before mine and they thought they saw some minor changes, but nothing that seemed alarming. She was asked to return in six months for a follow up. When my BRCA test came back positive, she was tested too and that’s when they found out that she also has a BRCA2 mutation. My mom was tested too, but her test came back negative. My dad just turned 79 and is in good health, so he wasn’t interested in being tested.
Being Your Own Patient Advocate
I’m in a unique position as a patient advocate, because I’m a nurse and I used that experience to become an advocate for myself, my mother, my sister, and now my community. My sister and I regularly offer online support through social media — if anyone needs someone to go with them to get a mammogram or they have questions or concerns after a diagnosis, we encourage them to just send us a message. I don’t have all the answers, but I can at least help get them in the right direction.
I have a few key points of advice. Number one: be an advocate for yourself. First start with your family health history. As a nurse, that’s a question I ask a lot, but I now have a very different appreciation of family health history. Knowing your family history is so important, because it could potentially help save lives, especially in the younger generations. Ask questions about it at your family events. Historically, in many African American communities, we don’t talk about health history. The elders kept that from us, I think mostly because they don’t want children to worry. But in hindsight, when we don’t have that information, we don’t know how to be our own advocates — we don’t have that important information to share with our healthcare providers.
I encourage people to start with breast cancer, because that is my story. Find out who in your family has had breast cancer — your mom, your auntie, your niece, your cousins? Are there any men in the family with prostate cancer? Or any kind of cancer. That will at least give you a clue of how you should talk to your physician and your healthcare providers.
Number two: know you’re not alone. If you need a mammogram, there are a lot of resources out there that can support you. Praise is the Cure has a program called My Sister’s Keeper and we give out cards that remind you when you should get your mammogram. The other side has a number you can call if you need anything, where we can put you in touch with resources. Praise is the Cure also sends care packages to breast cancer patients to help them during treatment and they provide support for the caregivers. They can help people find the answers to many questions, partly because they have such a wide network throughout the community.
Number three: Don’t be afraid of genetic testing. I know how it feels — I’m a black woman and I’m always leery about the research history, even though I work in healthcare. There are many people in the community skeptical of doctors and research. This is because of things like the experience of Henrietta Lacks, whose cervical cancer cells were used for groundbreaking research without her consent, or the Tuskegee syphilis experiment. That research study was conducted over 40 years without the consent of hundreds of black men who were told they were receiving free health care. Because of things like that, in our community we often doubt if medical results are genuine and we’re very suspicious of research. But I did get tested and it was a positive experience for me. I want people to know that it’s OK to have genetic testing and that it can have a real positive impact.
Another key is to make sure your paperwork is all in one place. Some hospitals may give you a three-ring binder, like my mother was given, which can make it easier. You should include:
- Print outs of MRIs, CT scans, lab results, and genetic testing results
- Business cards for all the providers you meet
- Copay receipts and an explanation of your benefits. There can be so many copays with certain insurances. For example, every time you go to chemo, you may have a required copay or deductible that you will need to pay at the time of service, so keep all of the receipts and anything that you receive from your insurance company together.
Even if you’re not someone who’s very organized and you don’t know how to sort it all, find a space where all of those items can be kept together — a binder, a crate, a tote bag, whatever works for you. That way you’ll have it when you need it and you can quickly locate everything.
Getting the Word Out and Starting a Conversation
Making the message commonplace, something that’s talked about regularly, is so important. I also think it’s easier to share a message through word of mouth. For example, Praise is the Cure has a whole line of uplifting messages on cute shirts. A lot of their apparel is in the community — we’re walking billboards. Today I have on a shirt that says “Pretty Girls Get Mammograms,” and I think it’s so important to get that message out and get people feeling comfortable talking about it. You might think about getting your hair or nails done, but you also have to think about things like getting your mammogram and taking care of your health.
The community aspect is also really important. I got involved with Praise is the Cure through my daughter’s dance school. Praise is the Cure does a lot of local events in the community to raise awareness. For example, they regularly do an event called Think Pink, where they partner with the dance school, encourage everyone to wear pink, and organize fun events. But they also educate the children so they could go back and share what they learned with their parents. These events, including an awareness week in October, are really spiritual and uplifting, and bring people together and give us the opportunity to talk about breast cancer in the African American community and the disparities related to that. Because they are so deeply rooted in the community, they’re more easily able to spread awareness and share their resources.
I loved their mission and what they were doing, but it also became personal once my mother was diagnosed with breast cancer. They made so many resources available to us, so we started volunteering shortly after her diagnosis. They really inspired me to be a resource for anyone who has questions, whether it’s about your own diagnosis or someone in your family like your mom or your aunt. I’m always willing to share my story. I am very open with people about my experience with breast cancer. I encourage people to ask questions, to learn their own family history. It makes me happy to feel like my experience positively influences someone else, even if they’re just scheduling a mammogram.
We’re all in this together.
Opinions of Basser blog contributors are their own personal opinions and do not necessarily represent those of the Basser Center.