Hi Tobey.  After reading your story, I feel compelled to share mine.  I, like you, have a very strong family history of breast cancer, and had made the decision when I was in my early 20s that I was going to have a prophylactic mastectomy before I turned 38 (my mom was dx at age  48, her mother at age 60, and her mother’s mother at age 70).  I was married at age 33 and quickly had three children in less than three years so that I could breast feed them before having my mastectomy.  When my youngest turned 1, my mom reminded me that I needed to get another mammogram and move forward with my plan.  I had a mammogram and sonogram in late February of this year, and it was completely normal.  I had already done research on who I wanted as my surgeons, so I met with your same breast surgeon, Karen Kostroff, in early March.  Because of my family history, she recommended an MRI, which I questioned the necessity of since I had already decided to have a double mastectomy, but acquiesced.  I had the MRI in mid-March (just three weeks after the mammo/sonogram), and it uncovered a suspicious area.  She immediately scheduled me for a biopsy, and 48 hours later, I was told that I had breast cancer.  I was scheduled for a mastectomy a week later. 

So, long story short (well, maybe not so short), I too had hoped to be a previvor and PREVENT the breast cancer, but it beat me in the end.  Luckily, because of Dr. Kostroff, it was caught early and was Stage 1 and had not spread to my lymph nodes.  It was, however, the most aggressive type and had I waited to have the mastectomy (my original plan was to have it in December), my prognosis would likely be much worse.  I have three very young children and, even as a Stage 1 cancer, my risk of recurrence was overwhelming to me (15-20% without chemo; 6-10% with chemo), and I had to deal with not only the immense pain of the mastectomy, but the thought that I would not live to see my children grow up.  I have dealt with those issues, and like you,  people commend me on my strength and perseverance.  But, at the end of the day, you do what you have to do and don’t look back.  I am just thankful that it was me who was diagnosed with cancer, and not my children.  But I FEAR for my two girls (and son, too).  My gene tends to hit 10 – 12 years earlier with each generation, which puts them at age 25.  I want them to be previvors!!  Luckily for you, you are BRCA positive, and based on my conversations with Dr. Cliff Hudis (at Memorial Sloan Kettering), those with the BRCA gene are fortunate in a way because in the next ten years there will probably be a vaccine to prevent that genetic form of breast cancer.  For me, because my gene has not yet been identified, I am not optimistic that the same will be available for my children.

For the young women who read your story or visit your website and are thinking of having a prophylactic mastectomy, I would tell them that dealing with the mastectomy is hard (both the pain and the body image issue), but it is so worth it if you can avoid the harrowing experience of chemotherapy and the related side effects (i.e., loss of hair, which, by the way, was way more difficult than looking at nippleless boobs).  I am still in the process of reconstruction, but I have no doubt that I will emerge from this with a much better body than I ever had before.  My plastic surgeon, Lyle Leipziger is amazing.  My hair, on the other hand, is a whole other story . . .

I thank God for Karen Kostroff, who’s medical judgment perhaps saved my life, and for Lyle Leipziger, who is methodically putting me back together again in even better form than I had ever hoped to be.  They truly are a gift to those of us lucky enough to be their patients. 

So, in closing, thanks for sharing your story.  It is therapeutic to share my mine, too.  There truly is a sisterhood, whether you are a previvor or survivor. 

author: Jacqueline