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Has anyone had experience with the broad ligament tumors or cysts that are associated with VHL ,though rarely? Just wondering what symptoms led to discovering them and how doctors usually find them? Thanks!
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broad ligament tumors/cysts?
- By kimbre
- Posted October 6, 2009 at 4:22 pm · 1 reply
- In Health management issues
- Shared with the public
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1 reply
- By joyceg98
- Posted October 23, 2009 at 12:55 pm
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I see that no one has replied. These tumors are much less common than the men's kind, and they are much less easy to find, so most women who have them are unaware of them. From the women I had spoken with, they are usually picked up only if there is pain or if the doctor notices something that looks suspicious for ovarian cancer.
Once the doctors notice them, they have to do a responsible job of "ruling out ovarian cancer," so frequently the recommendation is to surgically remove the mass to examine it under the microscope.
Knowing that you have VHL, you might want to discuss with the doctor the feasibility and wisdom of watching it for a while, to determine its behavior. A number of women have reported that they are watching such a mass with their doctors, and so far it is not growing so its behavior looks benign.
If you and your doctor decide it needs to be removed, though, we would appreciate very much your donating the surgically removed tissue to the VHL tissue bank. We are hoping to get ten samples in the bank. With ten samples, we could get a researcher interesting in studying this problem. Until that time, there is no way that we can get anyone to study it.
But banking is not in itself a reason for surgery! You should make your choice based on what is right for your health.
Call if you want to discuss this further.
Best wishes,
Joyce
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