All these preventive strategies to avoid cancer or to catch it early have made me feel both in control and out of control of my health.— Frances Merrill
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Three years ago, it had become clear that I needed to be tested for the BRCA1/2 mutation. I knew my family history of cancer was not good. My paternal grandmother died of breast cancer when she was just 41, and her mother had likely died of cervical cancer when she was in her 50s. More recently, my cousin was diagnosed with pancreatic cancer when she was in her early 30s and later tested positive for the inherited BRCA mutation.
I was 26 when I felt a mass under my left armpit; because of my family history, I immediately sought medical care. Although my primary care physician didn’t initially think the mass was malignant, given my family history, he suggested I have the genetic test for the BRCA mutation or ask my father to undergo genetic screening. In 2019, my father tested positive for the BRCA2 mutation. A year later, I tested positive as well.
Making Life-Altering Health Decisions
Before I knew about my family’s inherited faulty gene status, I hadn’t thought much about cancer. Now it has become a focal point of my life. Because of my increased risk for several cancers, including breast, ovarian, and pancreatic, soon after meeting with my genetic counselor, I underwent breast magnetic resonance imaging (MRI), which detected two large masses in my left breast. A biopsy of the tissue in both areas found atypical ductal hyperplasia. The diagnosis combined with my BRCA mutation status led my genetic counselor and my breast cancer oncologist to recommend bilateral prophylactic mastectomy sooner rather than later, which turned out to be a serendipitous decision.
A pathologic examination of the breast tissue after mastectomy showed several small masses of atypical ductal hyperplasia that were missed on the MRI scan. It is likely those cells would have turned malignant eventually, and then I would have had to deal with chemotherapy plus surgery and possibly other treatments.
Now my genetic counselor is recommending I have my ovaries (or just fallopian tubes) removed to avoid the risk of ovarian cancer. I have some time before I have to make this other life-altering decision, which feels like an even more difficult choice than mastectomy, because the surgery means I’ll be thrown into immediate treatment-induced menopause.
Coming to Terms With What It Means to Be a Woman
The realization of my genetic predisposition for developing cancer has helped me decide not to have children. Most importantly, I don’t want to pass my genetic fate onto another generation.
And even though I opted for breast-reconstruction surgery after bilateral mastectomy, I’m also still struggling with what it means to be a woman. Although sexual organs don’t equate to gender, it’s made me reevaluate what makes and marks my body as feminine without the larger breasts I was born with, without nipples, and without ovaries. With body-image issues being such a huge factor for many people, this just added another layer to an already complicated personal challenge.
Taking Control of My Health
Testing positive for the BRCA2 variant also puts me at higher risk for pancreatic cancer, so I’ve enrolled in The Pancreatic Cancer Early Detection Consortium (PRECEDE) study (https://precedestudy.org). So far, there is no evidence of disease. What gives me great solace about being in this study is that I’m monitored yearly for the cancer and have access to early intervention approaches if I develop the disease.
All these preventive strategies to avoid cancer or to catch it early have made me feel both in control and out of control of my health. It has also made me aware of the importance of having good health insurance. I’m a graduate student, and there was a period when I wasn’t sure whether I qualified for health insurance through my university. Worrying about how to pay for all my preventive surgeries and breast reconstruction if I don’t have health insurance has only added to my anxiety about my future health. So, I feel extreme pressure to make sure I have a job that provides good health insurance. If not, I know it means I could die of cancer.
Preventing Cancer Takes Physical, Emotional, and Financial Toll
I’m still on my journey of acceptance about both my past and possible future health-care decisions. I’m relieved that some decisions, like not having children, have already been made, ending another level of pressure and uncertainty.
I know I’m doing everything I can to reduce my risk of cancer, and this is giving me hope that I will escape the fate of my grandmother and great-grandmother and live a long, productive, and healthy life. However, the cost of preventing cancer—physically, emotionally, and financially—cannot be overstated.
Ms. Merrill lives in Queens, New York, and is enrolled in a doctorate program in Greek and Latin literature.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
