Getting educated about genetic testing and realizing there IS something we can do to help prevent this from continuing to take lives in our families.
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Hi, my name is Loren Wright, and I am a “Previvor.” What is a previvor? A previvor is a person who has not had cancer but has a strong genetic probability of getting cancer and has done preventative surgeries to reduce the risk. This is my story…
It was 1996 when my Mum called to tell me she had Ovarian Cancer! My Mum was a very young sixty-four-year-old fit woman who never had any health issues. Ovarian cancer? We were shocked! But on January 11, 1997 my wonderful mother passed away. Over the years since my Mum died, we were never told to do anything different with regards to our health screenings and we figured this was a freak thing that happened.
Fast forward to June, 2007: I get a call from my sister who is two years older than me and fifty at the time. She said she had a weird lump in her side and what did I think. I told her to get it checked out and that I was sure it was nothing. She did and was diagnosed with stage three ovarian cancer. Not again! She had surgery right away and started chemo. Her oncologist mentioned that there is a specific gene called the BRCA 1&2 genes and if present, a person has an increased risk of getting both ovarian and breast cancers in their lifetime and urged her to get tested. She had the genetic test and discovered that she is BRCA2+ and that most likely our Mum was as well.
Since my sister’s diagnoses, I stepped up my surveillance and made an appointment with my gynecologist. I went every three months for a transvaginal ultrasound. However, she said that by the time she “saw something” that it most likely would be stage three already. Not comforting. I also scheduled a mammogram which I had been lax on over the years. I just kept thinking, is this the visit she spots something? How can I live like this?
It was then that my OB/GYN introduced me to a genetic counselor who went over all the risks and informed me on what a positive result with my blood test would mean, and what my options would then be. I learned that hereditary breast and ovarian cancer syndrome is an inherited condition that causes increased risk of ovarian and early onset of breast cancer (often before the age of fifty). If I carried the BRCA2 gene my chances of getting breast cancer were up to 87 percent and ovarian cancer up to 44 percent, possibly higher since ovarian cancer was running in the family. I got my blood test back and I am also BRCA2+.
Presented with this information, I knew that I wanted to have the preventative surgeries. The surgeries consisted of a BSO (Bilateral Salpingo-Oophorectomy) and a bilateral mastectomy including removing the nipples. Women deciding to have the surgeries have been known to reduce their risks. Having the BSO can reduce my risk by 96 percent for ovarian cancer and having the mastectomy by 90 percent for breast cancer, according to Myriad Genetic Laboratories. This was my deciding factor. I was at complete peace with my decision and was anxious to get it done. On June 9, 2008 at forty-eight years old, I had the laparoscopic BSO and on July 28th the bilateral mastectomy with reconstruction. The BSO threw me into surgical menopause, I am now on a low dose Estrogen to help with the menopausal symptoms. The mastectomies were not so bad. I had expanders placed under my pec muscles and they were filled on a weekly basis to the desired amount. On October 30th I had my exchange surgery, out with the expanders and in with saline implants.
I am now a year out and feel great! I am so happy with my decision and would not change a thing. I have a wonderful supportive husband and son, and understanding friends. I have also has a lot of support through a wonderful non-profit organization and web-site called FORCE (Facing Our Risk Of Cancer Empowered). FORCE's Mission is: To improve the lives of individuals and families affected by hereditary breast and ovarian cancer. http://facingourrisk.org/
My sister is now stage four, but doing well. Her doctor said SHE saved MY life by genetic testing. I am happy with no regrets and enjoying my life.
The hardest part of
The hardest part was hearing that my sister had Stage 3 Ovarian Cancer! That was terrifying for all of us. After that it was easy for me to make my decision to have the testing and the surgeries.
If I could do it over again
I would not do anything different. I am happy with my outcome and had very caring wonderful doctors & an amazing support group through FORCE!
My participation with FORCE
Being connected to FORCE helped me in so many ways. Just to know I was not alone in this whole crazy mess was wonderful. I scoured the boards before my surgeries and went in knowledgeable and knowing what to expect by reading other woman's stories and experiences. There is a wealth of knowledge on the FORCE boards and also attending a conference allowed me to put names with faces & meet some wonderful new friends.
I am not shy about sharing my story with anyone who will listen. It is important to let women know that they have an option & we don't just have to sit back waiting for Cancer to attack us next.