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It was sometime in the end of January or early February when I got the dreaded phone call that I needed to go for a biopsy. My mammogram showed calcification. My Dr. said that with nine out of ten women it is benign. I made my appointment and I had that dreadful biopsy February 13, 2013. I took a Valium right as I got there and boy did that hit me hard within minutes.
My former breast surgeon was on vacation that week so I called the Dr who did my biopsy. He was very kind to me and gave me the dreaded news on February 18th, that I had BC. The first thing that I remember him saying was, "you are not going to die from this". My husband was beside me when I got the dreaded news and I just couldn't hold back my tears.
My gynecologist happens to be an Ashkenazi Jewish. She urged me to go and get tested for the BRCA mutation. I spoke to my breast surgeon and he tried to do everything to discourage me from getting tested. Well anyone who knows me knows that I am no push over, so I called Maimonides hospital because the other hospital didn't have an appointment soon enough for me. It was “Bashert,” which means your destiny in Hebrew. I met with Flora my genetic counselor, she was tall and thin with red hair. She was extremely pleasant and very caring. She explained to me how the test works and told me that it takes around five weeks to get my results. The protocol stated I then had to see a physician before I left. The physician on staff was absolutely shocked. Not only did this Dr not want to test me, but he never even sent me for an MRI as advised by my Dr who did the biopsy. Two weeks later I got a phone call from Flora. At that moment I knew for sure that I was a carrier of the BRCA mutation. I always knew as a young woman that I was going to get breast cancer. This was before I even knew what BRCA was or that it even existed. I know that it sounds crazy, but I just always knew. My paternal grandmother had BC twice and succumbed to the disease around the age of 63.
It has been a very difficult two years for me. I have had a lumpectomy, CMF chemo for six months, and a double mastectomy with immediate expanders reconstruction. An exchange with a BSO, because BRCA mutants not only have a high change of getting BC, but also a very high risk of getting ovarian cancer, which is also known as the silent killer because of its difficulty in getting diagnosed. Symptoms appear when one is stage three or four, which is the last stage of cancer. I also had a right foob revision along with fat grafting. So when people say that we are getting a free boob job, it is beyond crazy and offensive.
I never thought that this was going to be my life. I lost my beautiful breasts to this damn mutation and disease. Now I have silicone implants in me. Don't get me wrong, my plastic surgeon did a great job, but it will never be the same for me again. I can't sleep on my stomach and they feel like sand bags at times. I have chosen to have a BSO at 42 because I wasn't going to take a chance in getting ovarian cancer. Menopause hasn't been that much fun but it's manageable.
I would like to stress the importance of getting genetic testing. Also, I would like to tell every woman out there to go with their gut, I went with mine and it saved my life. I would also like to stress the importance of seeing a genetic counselor. Genetic counselors take the time to explain your risks and evaluate your family history. I spent about an hour and a half with my Flora. I also called her back several times after that and asked her more questions. I have a great team of doctors that I now go to at Sloan Kettering. My plastic surgeon is now my BFF for one simple reason; He made me feel whole again. My oncologist, who is not at Sloan but is beyond thorough, watches over me like a hawk.
I feel very blessed and lucky that my story has a happy ending because not everyone is that lucky. I want to thank the medical community for working tirelessly to find new ways of treatment. I believe that we have progressed tremendously. We need the medical community to work together and share their data so that we can come one step closer to finding a cure.
I am now in 2016. A lot has happened. I need another revision for my right foob. I am now a bit older and a little wiser. I have decided to create my own BRCA HBOC group for women who carry a mutation. We are growing slowly but surely. I cannot express enough gratitude in the support that these amazing women give me. It has not been an easy journey to say the least and my journey will never end having this mutation, but I am not going through it alone.
The hardest part of my journey was having chemo and not being able to do things that I was able to do before. Three years later my journey hasn't finished as far as my reconstruction is concerned. I lost time with my family because of my illness and surgeries that I will never get back. I still have pain in my chest from the mastectomy.
I would have never gone to have my initial lumpectomy with the first breast surgeon and would have gone straight to Sloan Kettering. I wish that I would have known about BRCA before I got BC.
It has help me not feel alone and know that there is a community that I belong to who understands what it is I am going thorough.