BRCA1, BRIP1
I have the BRCA1 and BRIP1 mutations. I am 75 years old and had breast cancer at 35 and at 49 had a mastectomy each time.. I have just learned that I have these mutations and my oncologist recommends a complete hysterectomy. I am having a hard time making a decision to have this elective surgery at my age. I am reasonably healthy. Would love to hear from others who might be in this situation
Comments
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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!
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Wow is right that you just found this out after two breast cancers. It's really sucks . I have a serious family history of breast and ovarian cancer due to BRCA1 mutation. I am having the same concerns as you. I am 63 and had no trouble making the decision to have the oophorectomy but I'm struggling over the double pmx.
If you are pretty healthy you shouldn't have much trouble with just the oophorectomy. I was much younger when I did it but I have been happy that I did it. Hard to make these decisions .
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Thanks for the encouragement. My GYN says that many times ovarian cancer begins in the Fallopian tubes. I failed to mention that my sister died of ovarian cancer at 50; brother died of pancreatic at 55 and another sister died of uterine cancer
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Hi Addy,
We are going to 3rd that WOW! Congrats on your survivorship!
You may want to check out the main Breastcancer.org site's page on What to Do if Your Genetic Test Results Are Positive.
We hope this helps! Please keep us posted on what you decide.
--The Mods
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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
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Hi Addy:
Further to my message above, this article provides some additional discussion. It's from 2013, so your providers may of course have more updated information:
http://www.ascopost.com/issues/december-1,-2013/reasonable-but-not-required-for-women-with-brca-mutations-to-have-hysterectomy-concurrent-with-salpingo-oophorectomy.aspx
Again, you will have to copy the text from http through aspx, and paste it in the browser to get there.
BarredOwl
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I had a complete hysterectomy on Sept. 22, 2015 and my recovery has gone well. So happy I made the decision to do this.
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Any suggestion on just having BRIP1 testing positive, I haven't heard much about it, I am debating on getting my ovaries out.... any suggestions?
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