BRCA1, BRIP1

Wow! Congrats on being a two time breast cancer survivor! You are my inspiration along my grandmother and great aunt. BRCA1 is the pits. You do do not need a hysterectomy just a laprascopic oophorectomy (removal of ovaries). It's fairly easy outpatient procedure with low complications. Unfortunately two of my relatives had ovarian cancer and one has since passed. Ovarian cancer is way trickier than breast cancer, very hard to prevent and diagnose. There are no reliable tests to diagnose it early so get the oopherectomy to be safe. Good luck!

Hi Addy:

To my knowledge, the more usual approach for BRCA1 is a Bilateral salpingo-oophorectomy" (BSO), which is the removal of both ovaries and the fallopian tubes, for the reasons noted by your GYN. You can find a summary about this here, plus research reports under the Advanced Reading tab here:

http://www.facingourrisk.org/understanding-brca-an...

Perhaps your oncologist has seen the abstract summarized by the ASCO post about a possible link of BRCA1 to uterine cancer here:

http://www.ascopost.com/issues/may-1,-2014/high-risk-uterine-cancers-found-in-brca1-mutation-carriers-who-had-preventive-oophorectomy-but-not-hysterectomy.aspx

Once again, the ASCO link fails! You can copy the full text through .aspx and paste it in your browser to see the article.

For convenience, I copy over the conclusion and caveat:

"According to Thomas Herzog, MD, Director of Gynecologic Oncology at Columbia University Medical Center in New York, this abstract presents important information, but the findings are "not ready for prime-time" application.

"This late-breaking abstract was very interesting in that the type of surgery required when a patient is diagnosed with a BRCA mutation requires careful consideration. Kauff et al have raised an important consideration regarding the role of uterine removal. The data are hypothesis-generating but not confirmatory of an increased risk of uterine cancer for these gene carriers."

Dr. Herzog said that a larger validation trial is required prior to making hysterectomy a standard recommendation for women who are BRCA mutation carriers.

"These data should be considered in counseling, but they must be weighed against the increased morbidity, cost, and inconvenience of a hysterectomy vs outpatient management, especially considering the low absolute risk of developing uterine cancer for these patients," Dr. Herzog emphasized. "

So unless there are other recent studies available, certain experts believe that a larger validation trial would be required prior to making hysterectomy a standard recommendation for women who are BRCA mutation carriers.

You are right that there are significant risks and side effects due to total hysterectomy. Someone else posted on this recently. Maybe you can ask the oncologist what studies relating to either BRCA1 or BRIP1 he/she is relying upon to make the recommendation of total hysterectomy as opposed to BSO.

Other factors to ask about include: What is your estimated risk of uterine cancer from having these two mutations (and any other risk factors you may have)? Does your family history of uterine cancer materially alter that risk or not? How does the level of risk of uterine cancer weigh against the risks of serious complications from the proposed surgery (percent risks)? How does the risk reduction achieved by surgery compare with the remaining risk from other types of cancer (e.g., pancreatic, peritoneal)? If you did not remove the uterus, what surveillance options are available for uterine cancer and how effective are they? You will probably think of more!

If you have not already consulted a genetic counselor to review the test results and your options, please consider doing so as it can be very helpful.

Hopefully, others will comment on their experiences.

Best wishes to you as you decide what is best for you.

BarredOwl