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Topic: muir-torre syndrome

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Feb 24, 2008 08:16PM

cinderella wrote:

Hi, anyone  ever heard of this rare syndrome? I was wondering if I had this. I have a history of breast and colon cancer before age 42.

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Feb 25, 2008 04:51AM - edited Feb 25, 2008 08:13AM by leaf

I hadn't heard of it before, but here is a link to a Pubmed abstract.
www.ncbi.nlm.nih.gov/pubmed/18...

Have you had genetic counseling? That would be my first step if you suspect you may have a genetic disorder, especially an uncommon one. Its not always wise to try to diagnose oneself.

When I went for genetic counseling, the counselor said I had a low probability of having a very rare genetic disorder. I had all the external qualifications for it (if you count my condition as breast cancer), but when it went to the board (meeting of doctors) they thought it would be a real stretch if I had it and it was not medically necessary. I chose not to be tested (at least for now) as it would be out of pocket.

Its the board-certified genetic counselors that are up on this stuff, usually found at a major institution.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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