Today’s story comes from Christine Christie of Australia. She was 48 when she learned that she carried the BRCA1 gene mutation.
Describe your BRCA journey in one sentence:
Challenging while at the same time enlightening.
What made you decide to get tested for the BRCA gene mutation?
I was the one in our family who initiated testing. I just knew that my family history was important and that I had to find some answers.
Are you BRCA1 or BRCA2 positive?
BRCA1
What did you think/feel when you discovered you were BRCA positive? How did it affect those around you?
My first thought was for my daughters and what this might mean for them. I expected to be positive after my father was positive (the first one to test in our extended family after the genetic counselors wanted to test him before me). The reality of being positive was more intense than I thought it would be than I imagined that it would be. As I tell others, knowing you are positive it far different than the possibility that you might be positive. Then I felt compelled to seek advice straight away regarding preventative surgeries. I only started to feel settled again when I had a plan with how to deal with it all. Fortunately, I have had the complete support of my family to proceed as I thought I needed too.
What surgical procedures (if any) have you undergone?
I underwent a total hysterectomy (removal of ovaries, fallopian tubes, uterus, and cervix) first. Then I underwent Prophylactic Bilateral Mastectomies with Direct to Implant Reconstruction.
How has your BRCA gene mutation changed your life?
It has turned my life upside down really. Well, it has for the time being. As a consequence, I had surgeries and had a cancer diagnosis. Much and all as I hate it all I also feel grateful that I found out about it. If I had ignored it and not pursued the knowledge I would still have had the gene fault and I would still have got cancer. It would have been a much more challenging cancer to deal with though if I had waited until I had become symptomatic before seeking medical advice.
If you could share any tips or advice with women who have just learned they have the BRCA gene mutation what would it be?
Give yourself time to adjust to it all. It is a big thing to deal with. There is no right or wrong way to manage it all. There is just the way that sits most comfortably with the individual. Seek knowledgeable medical staff who you feel comfortable with and whose advice you trust. But be prepared for a rollercoaster of emotions, all of which are completely normal. Above all, advocate for yourself. This is your life, these are your decisions. So find out as much information as you can to help in the decision-making process.
Also, don’t forget to enjoy life. Life is to be enjoyed and marveled at. Take the time to ‘smell the roses’ and appreciate the wonders around you. And life with BRCA goes on with all that life brings.
Do you have a personal cancer story to share?
I have had a cancer diagnosis. I did not think I had cancer. There was no reason to assume that I did. All screening tests were normal, I was fit and well and totally asymptomatic. But when I underwent my Prophylactic BSO and Hysterectomy the ensuing pathology investigations revealed a tumor in my right fallopian tube. I was shattered as I had tried so hard to avoid cancer. I had spent more than a decade trying to find out if our family carried a genetic fault. I did all that I could to avoid getting cancer. I had to endure 3 ½ months of chemotherapy (6 cycles of Taxol and Carboplatin)and have recovered well. All through the chemo I exercised as much as I could, ate a nourishing and organic diet (where I could) and I, fortunately, came through the process really well. I even managed to keep most of my hair by using cold cap treatments. I am so pleased that I kept my hair. It made me feel more normal, more like me. I was advised to maintain as much a sense of normality as I could and keeping my hair helped there enormously. I am now 11 months out from my diagnosis and 7 months out from the end of chemo and life is slowly returning to normal. One of the hardest parts for me has been adjusting to life with the cancer cloud as an ever-present companion. I hope that with time that presence will lessen and that I go on to have a long and healthy, cancer-free future.