family history of uterine sarcoma anyone?

weety
weety Member Posts: 1,163
edited June 2014 in Young With Breast Cancer

Hi, I'm trying to research and find out what's going on with my family history.  There is lots of colon cancer and prostate cancer, but since these are so common, I'm focusing on the rare cancer my mom died of: uterine sarcoma.  This is a different cancer than the typical uterine (endometrial) cancer that we usually hear about.  Uterine sarcoma is extremely rare (I think it's 1 in 30,000 or something like that) and I'm just curious if this could be something related to the fact that I am getting premenopausal breast cancer at age 38.  My genetics counselor told me that often with genetic based cancers, it's the rare cancers that end up telling the whole story.  So . . . she's got me researching and trying to find answers since my BRCA 1/2 tests both were negative.

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  • indianna
    indianna Member Posts: 1
    edited May 2010

    Hi  My mother was diagnosed with uterine sarcoma in Jan 2008, She had a total hysterectomy & since then has refesed any further treatment or medical intervention as she does not believe in modern medicine and it was hard just to get her to have the surgery.  I do not know at this stage whether she is cured or if it will progress & my mother will not be forth coming with any symptoms she may experience.  I am 36 and was diagnosed with bc in December in 2009 i did attempt to get some gene testing with my mum and i but she will have nothing to do with it.  I dont know if this will help you at all.

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  • weety
    weety Member Posts: 1,163
    edited May 2010

    Hi indianna,

    Thanks for your post.  Since I started this thread, I have done some more genetic testing, but everything is coming back negative.  I was tested for BRCA1 & 2 and also Li-Fraumeni.  My genetics doc finally told me at my last meeting with her that she doesn't think my family history fits the profile for any of the other syndromes.  (I guess I'm getting too expensive for them)  She said my family will just have to alert their doctors of the family history of cancer and be treated with a "cancer risk management plan."  She said just make sure to have family  members do colonoscopies, mammograms, etc 10 yrs earlier than the general recommendation.  I think she forgot that the mammogram guideline is now 50 because she said my daughters should begin at 25 or 30 because of my bc history (I was 38). 

    I have only found one other gal whose mom had uterine sarcoma (she doesn't have bc, but her sister did) and she lives in my same city. She's the mom of one of my daughter's school friends.

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  • crlacey
    crlacey Member Posts: 31
    edited March 2011

    My grandmother had uterine sarcoma. Her sibblings also had colon and stomach cancers. My aunt (her daughter) had breast cancer at 50 and now I have breast cancer at 30. We have been tested for BRCA1&2 with a negative. My aunt is now trying to get some more testing done for the family.

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  • weety
    weety Member Posts: 1,163
    edited March 2011

    Keep me posted if you find out any connection!  Besides BRCA testing, my genetics counselor also had me tested for Li-Fraumeni (negative) but she didn't seem to think any more testing was necessary. 

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