I am Alina from NYC 48F Ashkanaze Jew 5/7/13 - BRCA1 positive

I am BRCA+ as well. Did you get genetic counseling when you were tested? This is so beneficial. My counselor was more than willing to answer any questions, go over my risks, and tell me what preventions would be most beneficial in my case. I chose to have a BMX even though cancer was only on one side. I also had a bilateral salpingo oopherectomy at the same time. I do not second guess these choices at all. They were the right ones for me given the circumstances.

I am also in NYC and I see Dr. Christopher Mills (who is wonderful) at Beth Israel Cancer Center, seeing the plastic surgeon today referred by Dr. Mills.  They take CIGNA (also my insurance).  I am awaiting my BRCA results but have some eastern european jewish blood but no family history... we shall see...  Good luck to you, knowing what I know, I'd get the mastectomy, but I have cancer so its hard to advise...   

Alina, the main thing ovary removal will do is greatly lower your risk of ovarian cancer, which is significantly higher for you since you're BRCA+. Removing your uterus will not affect your ovarian cancer risk or your breast cancer risk, and there is no link between BRCA and uterine cancer.

I don't know if removing your ovaries will have any affect on your breast cancer risk. I was post-menopausal when I got BC, and it was ER+ (estrogen receptor positive). That's not an uncommon scenario, since after menopause your body still produces estrogen (though in much smaller amounts than before). It's produced in the adrenal glands and the fat cells.

Best of luck with your decision. It's not easy.

Leah

Hi, Alina.

I'm sorry about your results. I'm also BRCA1+ and have been through Triple Negative. I wasn't aware of my BRCA status when I went through treatment. I will be having a bilateral salpingo-oophorectomy and a bilateral mastectomy now that I know my risks.

I don't know what your percentages of breast cancer will be after ovary removal. For many--but certainly not all--BRCA1+ patients, the ovarian removal is in large part to reduce the significant chance of ovarian cancer that our BRCA status confers on us. When breast cancer impacts BRCA1+ women, it is very often Triple Negative, so it is unclear how or if the ovaries impact the cancer.

I had a prophylactic hysterectomy 15 years ago after my sister had ovarian cancer and because my mother died at the age of 42 of breast cancer.  I had hoped this would prevent my getting both breast and ovarian cancer.  I was also given Evista for about 2 years.   Last August I was diagnosed with Stage 3 breast cancer that was ER+ and PR+ and had a UMX with total lymph dissection. I am BRAC 1 and 2 negative.  The doctors were a bit surprised that with all I did I still developed such an agressive and fast growing cancer.  Years ago I had wanted to do PBMX but that was before my sister had ovarian Ca so the drs felt there was no reason to do the surgery-I am sorry I didn't go with my gut.  It's always better to deal from strength than weakness.  Since I had radiation the reconstruction is now a much "bigger deal."  But, I am doing a PMX on my other side together with bilateral recon the end of this summer.

I found a great BS-Dr Stephanie Bernik at Lenox Hill through my PS Adam Schaffner  I believe they take most insurance plans.

I wish you luck in whatever route you decide to take! 

PS I'm also an Ashkinaze Jew.

Hi Alina,

I worked with a wonderful BC surgeon who is also a Ashkanaze Jew who has BC and had a bmx w reconstruction and chemo. She is young, highly respected, and a compasionate surgeon. If you call her I'm sure she will take the time to consult with you. Dr. Dana Holwitt at the Montclair Breast Center. It is less than 20 miles from NYC. The MBC does most diagnostic testing at their state of the art facility. You can PM me if you want more details.

xox

I met with the Genetic Counselor yesterday and went forward with testing for the BRCA1 mutation. I have a 1st cousin with triple negative breast cancer who tested positive as well as many direct family members who fought ovarian and breast cancer. The g.c. informed me that there is a 50% drop in risk of BC for women who have the ovaries and fallopian tube removed. Of course, the risk drops further with preventative surgery of the breasts. If you need any other statistics, I have the paperwork and would be happy to share.