Positive BRCA1 .... oophorectomy or not????

My dad and two of his sisters tested negative for the BRCA but 6 out of 6 siblings, 2 cousins and my grandmother have had breast, ovarian, prostate, thyroid, melanoma and colon cancers. Also of Ashkenazi Jewish descent. I was diagnosed with a very rare and aggressive form of breast cancer when I was almost 43. Chemo and tamoxifen have put me in menopause.



Per my oncologist's recommendation, I am having my ovaries removed on 9/23. I absolutely am hesitant and worry about the same things you do as far as long term effects. I am not happy about it but I am doing it because if I could have had a preventive mastectomy and saved myself a year of being ill I would have. At this point my fear of more cancer overrides the other issues. Having cancer was horrible and dealing with the fear of recurrence is horrible too.



I am trying to look at it as something positive I am doing to prolong my survival, and according to my doctors and surgeon I don't have too much of a choice if I want a long term survival rate.



I am not sure what advice to give you, but I can acknowledge just how difficult a decision it must be especially if you are currently healthy. Maybe you could take a little time, to meditate on it, research, or ask your genetic counselor and Dr if you could talk to other women who have had preventive oopherectomies several years ago and ask how their quality of life is and what they have experienced. I am so sorry that you have to make this decision. {{Hugs}}

Hi EMarie, your story is so amazing.  Most primary care/obgyn's wouldn't recommend BRCA testing without at least one relative who had bc or oc, in addition to the Ashkenazi Jewish background.  I was lucky to get it paid for with the DCIS dx and my mother's bc history (which was post-menopausal), and the Ashkenazi Jewish background (and fortunately, I'm brca negative).  So, think of yourself as incredibly lucky to have this identified, and you can be proactive, in whatever way you are comfortable.

As Melissadallas said, you don't want to ever get ovarian cancer.  There is a book that came out last year, written by author Susan Gubar, called "Memory of a Debulked Woman."  While it is a fairly graphic memoir, it does detail what she went through.  She has had oc for around 8 years now, with multiple relapses, and she's been able to fight it back, but she knows that won't last forever.  Very few people have ever written about ovarian cancer (because many don't survive).  So, if you want to get an idea about it, this could be a good book--only if you can tolerate the graphic nature of it.  The breast cancer situation is also urgent, but breast cancer can sometimes be identified early, especially with the surveillance that you will receive.  Even as I write that, I know I'll receive comments about that, as well.  Many women do survive bc, but as you can see from these boards, there is a whole other side to bc.  It's just that with oc, the story is not like that at all.  In addition, as Melissa alluded to, the treatment, even the most "basic" treatment for oc is very, very physically challenging.  So, I'm glad you have the oophorectomy scheduled.  Then, you'll deal with the bc issues.  To my understanding, an oophorectomy doesn't 100 percent prevent oc, but it lowers the risk to a very small number, for risk of primary peritoneal cancer.  So sorry you have to face this, but glad it didn't sneak up on you from behind, when you have absolutely no control.

Definitely hook up with "FORCE" or there is even an HBOC Facebook page.  One of my OB/GYN's, Jonathan Herman, MD, has a website and, I think, a link to this Facebook page.  It may be a closed group that you can join.  Dr. Herman is a consultant to Myriad, but also very proactive in getting women tested for BRCA genes.  You can "google" him and see where you go from there.

I was diagnosed with breast cancer and found out I was BRCA1+ at age 44. I had my ovaries out without a second thought. Ovarian cancer is not something I wanted to face. Yes, I could have other health issues, but ovarian cancer was the most deadly. I can exercise, eat healthy, take calcium, watch my weight, etc, to help with the other possible issues. Nothing but removing my ovaries was going to help me not get ovarian cancer. BRCA + results suck and I am sorry you are dealing with this. My advice is to face the beast you know is around the corner.

I had some complications after my surgery and ended up in the hospital for three nights for IV antibiotics. The hyst/ooph was my fourth surgery in 9 months and I think my body had just had enough. I was pretty much back to normal after 2 months though and really don't feel much different. I was very active before all of this and still am so no weight gain from the instant menopause. I get hot flashes that are made worse by tamoxifen but aren't unbearable. I can't take any HRT as I had hormone-fueled breast cancer. My mother, maternal grandmother and maternal aunt all had total hysterectomies in their 40's and did well with it. My grandmother died of Parkinson's at 88, my mother is 71 with no cancer and my aunt is in great shape at 57. I would recommend having a gyn onc do the surgery instead of a regular OB/GYN as you are probably considered high risk. My gyn onc performed the surgery as if I might have ovarian or uterine cancer - he left each organ (cervix, uterus, tubes and ovaries) in tact as he removed them laparoscopically. He had a good look around while he was in there and would've taken lymph nodes and omentum if anything appeared suspicious. A regular OB/GYN wouldn't do all of that which could be trouble if any cancer is later found in the post-op pathology.

I am so sorry to hear about your BRCA status but lucky you for getting the test {and paid for} and being armed with that knowledge. Having a prophylactic oophorectomy is a tough decision and I am glad you are moving forward. 

I can tell you that I had a salpingo-oophorectomy for different reasons than you but I am glad I did it. I had to lose my left ovary because I had developed a large benign cyst which overtook the ovary. It was medically necessary to lose the left ovary and tube {Drs are taking tubes out with ovaries as they are realizing that nearly 50% of ovarian cancers start in the tubes}. Whether to keep my right ovary in tact was the big decision I faced. I decided to have it removed as well {completely nervous as I was pre-menopausal although on Tamoxifen for breast cancer treatment which blocks body absorption of estrogen}. My choice was based on my history of female cancers {which everyone is telling me is unrelated} and given the sad fact that ovarian cancer is typically not caught until it is too late. After the surgery I felt an indescribable sense of relief, as if a thousand pound weight was lifted off my back. I did not realize how much energy I spent fearing that ovarian cancer would be next in my life. My team of drs and oncologists shared that they would have made the same decision I did in a heartbeat, especially given how close to menopause.

I too read all sorts of cautionary tales of the surgical aftermath and can only share that none of it rang true. Yes I have mild menopausal symptons {body temp regulation issues once or twice a day plus insomnia} but that is what I would have faced naturally, eventually anyway. The best advice my oncologist gave me was to move forward and  know that she would partner with me to tackle any post-surgery side effects as they arose. I started taking a very light dose of effexor and I now feel great.

Best of luck to you as you take control of your health. {Because of your high risk for breast cancer, would you be a candidate for an Aromitase Inhibitor?}