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Beauty from Ashes – A Guest Post by Previvor, Melissa Johnson Voight

Wednesday, September 30, is National Previvor Day, 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?

 

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Melissa Johnson Voight, previvor

The Pink Moon Lovelies

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7 thoughts on “Beauty from Ashes – A Guest Post by Previvor, Melissa Johnson Voight

  1. Melissa, thank you for having the courage to tell your story. I am blessed beyond measure you came into my life. I have always said I was led to you. Divine intervention! I still remember the first day I spotted you in the crowd on the BRCA Sisterhood. I thought… Who is this beauty who shares such inspirational pink messages? I need to have her on Pink Moon. Thank you for saying yes, for being my devoted partner for four years. You worked your heart out educating and supporting Lovelies in need. I am in awe of you and the way you touch people’s hearts. You are an extraordinary human being! Happy Previvor’s Day to the other pea in my pod, to my dear friend, and as far as I’m concerned Pink Moon partner for life. Hand in hand, heart to heart the whole way. Love you Melbert!! xoxo, Nickster

  2. Nancy, I would like to thank you for taking an interest in the lives of others and sharing our stories. You have a beautiful gift of writing and you use your talent well. You are a loving and compassionate person who wishes the best for others. Thank you so much for the way that you honor and represent our community. You do so with great love and compassion! May every kind and generous thing that you have done for others, come back to you 100 fold! I am so thankful to know you!

    1. Melissa, Thank you very much for your kind words. And a huge thank you to you for sharing your story with readers at Nancy’s Point. I am thankful to know you too. xx

  3. I love information. I agree with what Melissa said, it is a blessing to be able to know about your genetic composition in order to be able to “prevent” certain health issues, not only for yourself but for your children too (note my quotes — we are never 100% sure but it helps). Not everyone wants to know this information but I have a feeling more and more people will change their minds. My only wish is that these tests become available to everyone. I understand insurance companies are not very flexible and some of them have different requirements which do not allow some patients to get tested. My insurance paid for my BRCA testing because I was dx with bc. The only reason I did genome testing was because I was part of a study – my insurance would not pay for this as it costs thousands of dollars. This is how I found out I had the ATM gene which would have helped me make a better decision when I had surgery. Would I have surgery again in the future, even if I don’t have cancer? Maybe.

    Melissa – I am sorry you have a mutated gene but I am glad you were able to receive the information and that you took the necessary steps to help lower your breast and ovarian cancer risks. I admire people like you because it’s already hard enough to make a decision during cancer. It’s probably more challenging to make such an important decision without having to be diagnosed. Good luck to you!

    1. Rebecca, I’m glad you were part of that study then so you could learn about your ATM gene. Personally, I am in favor of having genetic testing be available for any woman (or man) who wants it. I hate it when insurance companies dictate anything. I admire Melissa too. She made some tough, tough decisions, as have many others. Thank you for reading and commenting too.

  4. Melissa, thank you for sharing your story. I am struck by the fact that one day — only one day!! — is set aside to recognize the excruciating decisions faced by previvors. That Sword of Damocles is, I think, particularly cruel for women with the BRCA genetic mutation. It reminds me of how there is also only one measly day set aside as Metastatic Breast Cancer Awareness Day. As if…

    I am glad you are here and are well.

  5. Melissa, what a wonderfully candid post about your experience. I am so happy you are doing well. What struck me about your post was your spiritual faith, which I think helped you through this awful time. I am so glad that BRCA mutation testing exists. Thank you for an excellent post.

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