Hearing the words breast cancer was as common as asking the question “What is for dinner?” in my family.
Hearing the words breast cancer was as common as asking the question “What is for dinner?” in my family. It attacked my grandmother, mother, aunts, cousins and sisters as if they were prey.
The warfare against my family started in 1975 and covered three generations with a total of 11 women draftees. Each diagnosis sounded an alarm. I have lived most of my life in silent fear of cancer.
Then, one day I found an area of skin that looked like the peel of an orange on my breast. I scheduled an appointment with my family doctor and told her about the family cancer history. I followed her guidelines and started having yearly mammograms in my twenties. The orange patch disappeared, I had escaped my nemesis, and I moved forward.
But time created a new story.
I was 42 and having a routine check-up when the doctor found a lump in my breast. He instructed me to have a mammogram immediately. When the mammogram confirmed the tumor, I moved forward with additional diagnostic testing. I had more waiting, and finally, the results came in.
The tumor was malignant. In October 2003, I was diagnosed with de novo metastatic breast cancer, Stage IV (newly diagnosed breast cancer that has already spread to distant parts). I became the first woman in my family with that diagnosis.
As an African American woman who is familiar with high-risk breast cancer, health disparities, aggressive cancer, people of color’s cancer death rate, and late-stage diagnoses, I was facing an unseen minefield of health disparities and treatment options. And surrendering was not an option.
I learned that sharing my voice and participating in treatment decisions were my patient responsibilities. What this meant was advocating for myself. It also meant investing in learning about my specific breast cancer type and participating in discussions with my medical team about my care. As a newly diagnosed patient, I looked for vetted, reliable resources, and information and knowledge empowered me as I made treatment decisions.
In this world of information outlets, I believe starting with the oncology office because of its advantages. They have trained professionals such as social workers, nurse navigators, patient advocates and lay persons who volunteer for peer-to-peer support to address questions.
One other important area is mental health. Anxiety and depression ride alongside the breast cancer journey. Do not be ashamed to ask for help. Let your medical team know if you are depressed. Get the help you need.
Finally, when you need additional support and resources, look at national cancer websites. For example, I was terrified about being BRCA1 positive. (People who inherit certain mutations of the BRCA1 gene have a higher risk of getting breast cancer and other forms of the cancer). After searching the web, I found FORCE, Facing Our Risk of Cancer Empowered (facingourrisk.org).
With a travel scholarship from FORCE, I attended their conference. They provide resources that help people make informed medical decisions through education, support, advocacy, and research. The isolation I felt having a gene mutation disappeared at that conference. FORCE eradicated my isolation through meeting others with gene mutations and educational resources. And I have become a peer-to-peer volunteer with FORCE to help others needing support with a gene mutation.