About

The stats: I am 36 years old, Ashkenazi Jew, I’ve been married for almost 4 years, and I have a 1.5 yr-old son. I am a professor at a large state school in Pennsylvania.

Basic health history: I’m surprisingly healthy; I say surprisingly because I am quite overweight and while I go through periods of activity, I go through longer periods of inactivity. I rarely get sick. Five years ago I was diagnosed with Rheumatoid Arthritis. There are short periods of time where this greatly affects my life, but for the most part, I forget I have it; of course, the medication and injections remind me. I take a lot of medications for depression and anxiety.

Seven years ago, I learned that I am BRCA2+. This wasn’t a huge shock. Pretty much every person on my father’s side of the family has died from cancer or is BRCA+ and taking prophylactic measures to prevent cancer. Since then, I have rather religiously scheduled mammograms, breast MRIs, and vaginal ultrasounds to check for breast and ovarian cancer.

In May, my family and I moved from rural New England to a city with lots of medical resources. One of the reasons for this move was my impending prophylactic surgeries – I wanted to live somewhere with excellent medical care so that I could be finished dealing with BRCA once and for all. Immediately after moving, I went to the Hillman HBOC Clinic to meet a genetic counselor, a breast oncologist, and a gynecological oncologist. After meeting with these women on November 2, 2012, I decided to spend some time thinking about my options for mastectomy with reconstruction as well as hysterectomy. I had decided a good bet would be to have the hysterectomy in May 2013, when I would have the summer to recover and adjust to HRT (I had severe post-partum depression and was worried about the effects of hormone replacement). I would then have the mastectomy when my son was a little older and more self-sufficient – maybe in summer 2014.

However, at my last mammogram, on December 19, 2012, the radiologist saw something on my mammogram. He saw two areas of microcalcification in my right breast, one slightly bigger than the other. Calcification is pretty common apparently, but because of its non-circular shape and asymmetry (it’s only in one breast, not both), he considers it suspicious. Calcifications are also not really tumors; they are signs of pre-cancerous activity. So catching it now is a best-case scenario.

I won’t go into the details of what an awful day this was. Needless to say, I really beat myself up – how could I have sat on this BRCA information for SEVEN YEARS?!?! I was being punished for not being pro-active (here I’d thought all the scanning was enough). I left the office with an appt for a stereostatic biopsy, which I will have on Tuesday, and a solid decision that if the results come back benign, then I will have my PBM at the end of May. No more waiting around. When I came home, I began making appointments to meet with surgeons so I can find someone I like to do the surgery. Of course, if the results are malignant, then we have another story here. But I’ll deal with that once the results are back.

So that’s where I am. The purpose of this blog is mainly to keep track of all of the information I’m collecting. But, I’m choosing to make it public because any information can help others. There are lots of BRCA+ women out there blogging. The more stories there are, the more empowered we can all be.

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5 comments

  1. I am also BRCA 2 positive..and the moment I learned my result, plans formed to become proactive. I did not wait. I had a double mastectomy and began reconstruction, at the same surgery. I had expanders in my chest to build the space for implants. 2 weeks out, I ended up back in the hospital with infection. It was bad. I was there for a week. 3 days after arriving, they told me my right side was a “loss”. It was there i decided with calm and peace, that i did not really want them. After years of carrying that monkey on my back, “when will it be me turn to be diagnosed?”..I needed the peace of knowing my life would never be consumed by the fear of that result. I have prosthetic breasts., and I love coming home after a long day, and laying them on the dresser. Myself and my daughter have been tested. She is positive as well, and at 30, has known for over a year. Her life is finally coming together..where she will have the support I know she will need in order to make some tough decisions in the next couple years. My Son is 21 and feels he has more time before he tests. I have brothers with kids and grandkids. We are not in communication, but I went out of my way to inform them of my health findings, without even so much as a “thank you”. Other family members I believe are in denial, and are uncomfortable talking about it. I work in a OB GYN office..and i am suprised how far and few between BRCA testing is brought to our patients attention…especially to those with a “History”. I have tried to advocate education, and have made myself open to any questions or curiosity. My advise to you, is do what is best for you, reconstruction is not as easy as they make it appear to be, ask a lot of questions, and talk a lot! Best of luck to you…

  2. That was me in October 2011. I am finally through the worst and on the other side. Last reconstruction and fat grafting wasarcj 1st. My son is now 16, learning to drive, and looking at colleges. Life changes. I changed. Nothing stays the same. Life is perfect.

  3. I am in awe of your story & inspired. I am currently conducting research at the University of Pennsylvania for those carrying BRCA 1&2 mutations, to help them with family planning & issues surrounding fertility. The goal of the study is to aid our future generations in family planning & issues surrounding fertility. If you would like more information or know of anyone who would be interested in participating please contact me at any time!

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