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Can ovarian cysts be part of VHL? What about ganglion cysts and cysts in the skin?
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Ovarian Cysts
- By shema1999
- Posted October 3, 2009 at 12:24 pm · 4 replies
- In Getting a diagnosis
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- By ballroomdancer
- Posted October 4, 2009 at 8:32 am
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Good question. It would be nice if we had a gynecologist on board the medical team for VHL as i have always had a lot of questions about the role hormones/birthcontrol pills/ may play in the development of cysts or tumors in VHL patients. I deal with acne (as an adult) and sore breasts (fibrocystic) and i am missing an adrenal gland. This may sound dumb..but if the adrenal gland has to do with hormones, and you are missing one or both, what affects does this have on a female and gyn. issues. I have a friend with VHL who went through menopause and absolutely refused to be put on hormone replacment therapy because she knew it would cause tumor growth. I think there is a link between gyn. and VHL tumors, and i hope someday we can get a gyn/ob doctor very familiar with VHL to give us some answers.
- By kimbre
- Posted October 4, 2009 at 5:57 pm
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i too have ovarian cysts but i think it is fairly common in the general population of women. on my last scan they also showed multiple calcifications in my breasts. since breast and ovarian issues are not identified in VHL, i would think this is just something we as women can get separate from VHL. it is a good question though, but who can answer it i wonder?
- By ballroomdancer
- Posted October 5, 2009 at 7:40 am
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As far as gynecological issues go, i do know that woman with VHL can develop broad ligament tumors. When i have my yearly pap smear exams, my gyn. doctor always feels for them because they have been reported in VHL patients.
- By joyceg98
- Posted October 8, 2009 at 2:54 am
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The best article on this subject is still:
http://www.vhl.org/newsletter/vhl1998/98ccapmo.php
We have been working with the ovarian cancer community to develop better ways to do a "differential diagnosis" between a benign cyst or cystadenoma (like an APMO) and an ovarian cancer tumor. This is an issue for all women, not just women with VHL.
In the general population, when a woman has surgery to remove a suspicious tumor, 90% of them turn out to be benign. It's good that it is not cancer. In that sense, the surgery was successful. However, the woman had surgery, with all its attendant costs, risks, time away from family and job, etc.
It would certainly be much nicer if we were able to tell with certainty BEFORE the surgery whether it was benign or malignant!
All best wishes,
Joyce
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