Gene Testing

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EZLiving66
EZLiving66 Member Posts: 1,482 Member

I read this and wonder how you go about getting genetic testing?  I have UPSC and have never been tested.  I have two birth daughters and three granddaughters.

http://www.livescience.com/55246-brca-gene-breast-uterine-cancer.html

Love,

Eldri

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  • debrajo
    debrajo Member Posts: 1,095 Member
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    DNA

    I asked my onc-gyn about testing.  I didn't have a strong first degree relative with UPSC or even uterine cancer, I did mention that I had my DNA run for Geoneology research and it showed that I had three lines with Ashkanize Jew on my mothers side.  She perker right up and went to get the genetics doctor.  Went through the spille all over again and she ordered the test.  Seems that the Ashkanize Jewish tribe has a somewhat stronger happening for UPSC than the general population.  My mother did not want to be tested(?  Breast cancer in '86, three of her mothers sisters also cancer), I did for my daughter, one niece, and three granddaughters(and counting).  I wanted to know for them.  Turns out, I do not carry the gene, nor for BRACA 1 or2, nor Lynch Synd.  Guess just the 1 in one million "lucky" ones!  Ask your onc, insurance payed for mine, no problem.  Best, Debrajo

  • ConnieSW
    ConnieSW Member Posts: 1,678 Member
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    My PCP

    told me last month that the criteria for genetic testing has changed and is now recommended for anyone who has had endometrial cancer.  So I gave my spit ( I have a daughter and granddaughter).  It'll be awhile till I have the results.

  • Soup52
    Soup52 Member Posts: 908 Member
    edited July 2016 #4
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    I thought about being tested

    I thought about being tested mostly because I have two daughters, but there has been no cancer in my family so my dr didn't recommend it. I still would like to have it done, but I don't know if insurance would cover it. I'm going to talk to the dr. Again next time.

  • Kvdyson
    Kvdyson Member Posts: 789
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    23andMe

    My husband and I are both getting our DNA tested through 23andMe for $199 each. I read a post by someone on another online support group who said that she had hers done that way. The FDA prohibits 23andMe from providing detailed analysis of the DNA but there is a third-party called Promethease that will analyze the data for an additional $5. You simple upload your 23andMe report and they analyze it for you. I'll let you all know how it works out once I receive the report and analysis. Kim

  • debrajo
    debrajo Member Posts: 1,095 Member
    edited July 2016 #6
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    @ Kim

    I had my geneology testing through My FTDNA.....93% western Europe, 7 % Asian,Syria, Egypt, Jordan, and American Indian.  I had my mothers and fathers done.  Would be interested to see what a newer testing facility finds for you.  My doctors were really excited over the Jewish conection, but no-go unless the testing didn't go far enough  I do know that both mother and fathers lines are two of the oldest of all the hapalog groups.  Debra

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited July 2016 #7
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    I was tested

    for Lynch syndrome, which came back negative.  However, in view of this new info, and because my mother had both breast and uterine cancer, I plan on asking for more extensive testing.

    Chris

  • beccabtown
    beccabtown Member Posts: 234
    edited July 2016 #8
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    My gastroenterologist, who is

    My gastroenterologist, who is a family friend and knows there is a history of colon cancer in my family, has been urging us to be tested for Lynch Syndrome. Rereading my pathology report last week, I noticed that it said one of the tissue samples would be sent for Lynch testing. That was two months ago, and no one ever told me the test results or posted them in my online record. Anyway, I finally got a response from my gyn-onc that the test was negative. I was appalled that such important information had not been conveyed to me, even if it is a "negative" result. (I've recently gone through a similar thing with this doctor, trying to get my pre-surgery CA-125 results.) I will discuss BRCA testing with both of my oncs during my next visits.

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited July 2016 #9
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    Get copies of your records

    It's probably a good idea to get a copy of your medical records from each doctor and/or hospital/lab you've been dealing with. The state I'm in only requires medical records to be kept for 6 years and this is stuff I wouldn't want to be lost to time. Who knows what's in these records that you weren't aware of unless you have your own copy?