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Monday, May 17, 2010 Florida Linda, Community Member, asks

Q: Remove uterus as well as ovaries for BRCA positive?

I have tested positive for the BRCA2 mutation & am considering next steps. I think removing the ovaries & tubes is almost a no-brainer, as I'm past menopause & my BC is estrogen+. (I'll be starting Arimidex soon.) Taking out ovaries/tubes reduces risk of ovarian cancer and also recurrence of BC.

But gyn-onc (very well-respected) recommends also taking out uterus. As far as I can find, BRCA doesn't increase risk of uterine, endometrial, or cervical cancer. It would be laparascopically assisted vaginal procedure.

I'm on the fence as to the extra risks, vs. long-term benefits of the complete hysterectomy. I guess it's true I don't "need" my uterus any more. But it seems drastic, especially in view the large number of "unnecessary" hysterectomies that are supposedly done.  I've had no bleeding, pelvic pain, or other symptoms.  My periods were always regular & fairly easy.  Are there structural issues with "holding things together" in that area?  He says he does a procedure to join the ends of the ligaments to prevent prolapse.

From what I've found so far, experts are split about 2 to 1 in favor of keeping the uterus. The major justification for removal seems to be the small remnant of the tubes left attached to the uterus, but supposedly there have not been instances of cancers originating there.  Other than that, I'm not finding too much information on the justifications pro and con.

Maybe my dr. is ahead of the curve for treatment -- or maybe he's overly aggressive?

Comments?

Linda

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Answers (2)
PJ Hamel, Health Guide
5/17/10 11:57am

Hi Linda - Truthfully, I have no experience in this area. We're breast cancer survivors offering support; we have no medical training, just what we've read/experienced. It sounds like you've done a lot of research on your own, and have all the scientific data. For real-life experience, my suggestion is to post this question as a sharepost, and see what others in the community might have to say. Good luck - PJH

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RoseG, Community Member
6/13/11 7:57pm

For BRCA+ women, the only worry is breast or ovarian cancer, not uterine cancer.  There is really no need to remove the uterus.  If I were in your shoes, I'd be concerned about the sexual effects of losing my uterus.  For me, uterine contractions are part of orgasm.  Uteruses are usually only removed when there is a definite cancer in the reproductive organs or when there are heavy bleeding issues, such as those caused by fibroids.

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By Florida Linda, Community Member— Last Modified: 06/13/11, First Published: 05/17/10