muir-torre syndrome

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cinderella
cinderella Member Posts: 62
edited June 2014 in High Risk for Breast Cancer
muir-torre syndrome
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  • cinderella
    cinderella Member Posts: 62
    edited February 2008

    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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  • leaf
    leaf Member Posts: 8,188
    edited February 2008

    I hadn't heard of it before, but here is a link to a Pubmed abstract.

    http://www.ncbi.nlm.nih.gov/pubmed/18270343?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum



    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.

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