National Previvor Day is a day set aside during Hereditary Breast & Ovarian Cancer Week (HBOC) to recognize previvors. What’s a previvor? Someone who carries a predisposition (family history or hereditary mutation or other predisposing factor) to cancer, but does not have the disease. I am pleased to share a wonderful guest post by my friend and previvor, Melissa Johnson Voight. Melissa shares her story about testing positive for the BRCA1 gene mutation and what she decided to do about it. Thank you, Melissa, for sharing your story at Nancy’s Point.
Beauty from Ashes ~ My Previvor Story
By Melissa Johnson Voight
In November of 2009, I received a phone call from one of my family members informing me my cousin, Karen, was diagnosed with a very aggressive form of breast cancer. Through her blood work and tests, she discovered she carried the BRCA1 gene mutation. We learned our paternal grandmother passed away at age 41 with the same mutation. We also found out my dad and both his brothers were also positive for the BRCA1 mutation. My cousin’s oncologist suggested all the cousins (boys and girls) be tested to see if we also carried the mutation.
My sister, Kim, wasted no time and made an appointment for both of us. On March 3, 2010, we arrived at Walter Reed Hospital, in Gloucester, Va. We had our blood drawn to be tested and they gave us an estimated waiting time of 2 weeks for the results to return.
During that time, I kept asking myself, what if? What if it comes back I am positive for this genetic mutation?
I knew what choices I would ultimately make if the results came back positive. I felt God speak to me within my soul, “I will make beauty from ashes.” I simply had to TRUST Him and take His hand. I knew right then, in my heart, what my result was going be. God was preparing me for a journey with Him.
Two weeks later we received a call from the oncologist. Trying to stay hopeful, but knowing in my heart what I was going hear, we entered the waiting room. They called me and my sister back. As the oncologist entered the room, my hands were sweating and my heart was racing.
She looked at my sister and said, “You do NOT have the gene.” Then she turned and looked at me and said, “but you do.”
There it was, in black and white, Positive for Deleterious Genetic Mutation.
That gut feeling I had been experiencing for 2 weeks, was now a reality. There was no longer the question of what if… but, what now?
The oncologist told me I had an 87% chance of getting breast cancer in my lifetime. I could lower my risk to 50% by having an oophorectomy (removing my ovaries and fallopian tubes) or lower it further to 3% by having the oophorectomy and a prophylactic bilateral mastectomy.
I looked at my sister and said, “It’s okay ~ It’s going to be okay.”
As we left the office, my sister called my mom and gave her the results. My mom had been so certain we would both be negative, but we assured her I was going to be alright and that I knew what I had to do.
I was 41, the same age as my dad’s mom who passed away from this very gene. I am married and I have 2 children. I have to do this, I told myself. I looked at this as a blessing, a gift from God, to have the knowledge of what was waiting for me down the road, before it even happened. This isn’t a matter of “if” breast cancer was going to touch my life, but a matter of “when.” I didn’t want to keep looking over my shoulder waiting for the ball to drop. I wanted to be here with my family and the ones I dearly love.
In the days following the test results, I made a lot of phone calls to find out which Dr.’s I would use to perform my surgeries. I had one appointment after another. For someone who hated going to the doctor, I was having my fair share of appointments. I had an MRI, blood work, and a mammogram, all prior to my surgeries. I also met with a surgical oncologist and a plastic surgeon.
On March 30th, 2010, I had an oophorectomy, performed by my personal gynecologist. And on May 7th, 2010, I had a prophylactic bilateral mastectomy, with immediate reconstruction, performed by a surgical oncologist and plastic surgeon.
After having the necessary procedures to lower my ovarian and breast cancer risks, I opted to do nipple reconstruction. This was done under local anesthesia, in October of 2010. It was fairly quick and simple. Days after the procedure, the left nipple began to turn dark. The next day, it became darker. It wasn’t looking good and I was starting to fear the worst. Then over the weekend, it turned black and it died.
When I returned to my plastic surgeons office, he set up an appointment for me to have the failed nipple on the right removed. A few months later the left nipple began to flatten out. I wasn’t sure what move to make next at this point. I was told that there was yet another option….3-D tattooing. Wow!!! I thought that sounded interesting. At this point, what did I have to lose?
In March 2011, I went to the surgeon’s cosmetic technician and began the process. After many months and five appointments, it was done! I can finally say, I am very pleased with the outcome of my journey. I praise God for sustaining me through it all ~ it wasn’t always easy or always what I expected, but the bottom line is that I am alive and I am well.
It has been 5 years since I became a previvor.
I feel truly blessed for each new day. I am grateful we live in a time when we can be tested for these genetic mutations. I am thankful we have a choice. My choice was to take the gift of extending my life. Sure, I had to make a radical decision….but, I can be here with my loved ones.
BRCA testing saved my life.
We need to educate our family members about their risks and encourage them to take action. May we as previvors continue to live empowered and with confidence. God always keeps His promises.
Melissa has also generously shared her story in, The Pink Moon Lovelies, Empowering Stories of Survival, by Nicki Bosci Durlester.
Are you a previvor or do you know someone who is?
Would you ever consider prophylactic surgery to try to avoid getting cancer down the road?
Do you have a comment or question for Melissa?
Melissa Johnson Voight, previvor