BRCA: A previvor's story, from discovery to empowerment
What is a previvor?
A previvor is a survivor of a predisposition to cancer. The term differs from those already diagnosed with cancer. Previvor was coined in 2000 after a FORCE (Facing Our Risk Cancer Empowered) member felt that she “needed a label.”
In 2007, Time magazine declared the term #3 on their list of top 10 buzzwords of the year. Congress passed a resolution declaring September 29, 2010, Previvor Day. This resolution recognized the unique challenges faced by women and men at high risk for cancer. (www.facingourrisk.org)
In 2009, I was told that my father tested positive for the BRCA (Breast Cancer) gene mutation and it was suggested by his oncologist that I be tested for the gene mutation.
I had never heard of the BRCA gene mutation before. My father had non-Hodgkin’s lymphoma, I wondered why was he tested for the BRCA gene mutation. My aunt, my father’s sister had breast cancer and had tested positive for the BRCA gene mutation. Because of the family history, this put my father at risk. The doctor recommended that he get tested to know if there would be a risk to his children. Statistically, because my father had the mutation, I had a 50% chance of having the BRCA mutation.
For many months, I vacillated on whether I wanted to get tested and find out the results.
Finding out my results
I decided to go speak with a genetic counselor to better educate myself on BRCA. I found out that if I tested positive for BRCA1 I had a 50 to 85% risk of developing breast cancer by age 70 and on top of that, a 40-60% risk of developing ovarian cancer by age 85. A month later, I decided that it was best for me to take the test. I remember returning to the genetic clinic to get my results and the counselor calling my name with a warm smile on her face. I misread her greeting as conveying that everything was okay, but it was not. We sat down and she said, “We got your results, and you tested positive for BRCA1.” In that instant, my life was forever changed.
She spoke for the next 2 hours about family history, statistics, genetics, treatment options, and I don’t think I heard a thing she said. I only remember what she discussed, because she gave me a copy of what she spoke about. I called a friend and my step-dad after and said, “The test came back positive. I am fine. I think mom is taking this much worse than I am.” The fact of the matter was, I was not fine, but in shock and it really hadn’t sunk in yet.
None of it really did until I went to see a breast specialist and geneticist/gynecologist, who both specialize in seeing patients with BRCA. The wake-up call came when the gynecologist told me within the first 10 minutes of my appointment, “We need to discuss the removal of your ovaries.” I was completely caught off guard and shocked by his bold and unvarnished statement.
Doing my research
After my doctors’ appointments, I immersed myself into learning all that I could about the BRCA mutation. I did research online, read books and watched a moving documentary.
“Previvors” by Dina Roth Port is stories of five women living with the BRCA mutation and the choices they make. It is very informative, discussing risks, getting tested, making decisions about whether or not to get surgery and the controversy surrounding the BRCA mutation. It even discusses the advances in prophylactic surgery and breast reconstruction, body image and having a positive future.
A personal journey is written in “Pretty is What Changes: Tough Choices, the breast cancer gene, and learning how to live in the DNA age” by Jessica Queller. It is a first-hand account of a young woman living with the knowledge of having the BRCA mutation and how it affects her life, her family and how she ultimately makes her life-changing decisions.
“In the Family” by Joanna Rudnick is a documentary that shows Joanna’s personal journey after she has discovered that she has the mutation. It is both insightful and informative. There are interviews with doctors, behind the scenes at her appointments and the effect that it has on her personal relationship. Even more profound are the times she spends with breast cancer survivors. She is a support for these women, as well as a student, as she hears firsthand what it has been like for these women to live with cancer. A very moving piece is the trip that she takes with a family to a genetic clinic, as three sisters find out if they have the genetic mutation.
I highly recommend both books and Joanna Rudnick’s documentary. All are very personal and informative.
Finding FORCE and my empowered self
A few months after my research, I attended the FORCE conference in 2010. This meeting helped me to move forward and provided me hope and truly empowered me. I gained a wealth of knowledge about BRCA and joined the close-knit sisterhood of women with BRCA. We laughed and we cried together.
But through it all, I discovered myself, my depth of strength and my ability to try to not take life too seriously; it only makes things more difficult. BRCA cannot overcome me; I am empowered.
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- National nonprofit organization devoted to hereditary breast and ovarian cancer - FORCE - Facing Our
A nonprofit organization for women whose family history and genetic status puts them at high risk for ovarian cancer and/or breast cancer, and for families in which a BRCA mutation may be present.