testing

should we worry about our children if we don't test positive? what if the doc says don't bother getting tested? should we insist?

Comments

  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited November 2006
    You're talking BRCA, right? My sister wanted the test, but her insurance wouldn't cover it until my test came back positive. Mine was negative, therefore that was the end of testing. Had mine been positive my HMO would have tested anyone in the family that requested it.

    Now the females in my family are on high alert. I remind my daughter monthly about her self-exams and not to miss her yearly exam. She's only 21 and doesn't want to think about it. Who can blame her, neither do I.

    lini
  • jacksmom5-2006Oct14
    jacksmom5-2006Oct14 Member Posts: 19
    edited November 2006
    I just read something this morning that said that the women who have close relatives with breast cancer who test negative for breast cancer genes (I am assuming BRCA1 and BRCA2) are still at an increased risk of getting breast cancer than those women who do not have a relative with breast cancer. My mother had breast cancer and I was diagnosed a year ago (only two in the family that we know of). My sister went to the doctor the other day and her doctor wants her to get genetic testing done. After I read this article I don't know if it makes a difference if she tests negative or not - it looks like your risk is still increased even if you do not have BRCA1 or BRCA2 and you have a sister, mother or daughter with bc. I guess there is the possibility that there are more genes out there that have not been identified yet. I was thinking about getting tested (I have three daughters)but I am not sure insurance would pay for the test (not a strong enough family history). Now I am not sure it would matter. Like Lini said - all females in the family should be on high alert - do self exams, get mammos - basically do everything in your power to catch it early if you can.

    Sue
  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2006
    I have no immediate family w/BC, but a 2nd cousin and great aunt. They paid for mine, and dont know if it had to do w/that fact or not..I get results on Monday.

    One thing tho, my DH has PC and his sister has BC both high grade and highly advanced. I know she wasn't tested, but maybe her daughters were. Now, we have sons, hubby's onco wants our sons tested for PSA at 30. The youngest is 25. Gonna have to find doc to test him sooner since we BOTH have CA..
  • susan_CNY
    susan_CNY Member Posts: 276
    edited November 2006

    Peachy, wishing you good results with your test, how scary for your children.I was #6 for colon cancer in my Dads family and dx with bc a year later (#3 in Dads family) we all have had multiple primaries, including many with oral and throat. My mom had hysterectomy at 34 and myself at 32, hers was ovarian mine was cervical. Doc says is most likely genetic, just haven't figured out which gene yet. His only advise as usual, warn the kids. We sure are going to have a generation of paranoid people!

  • donnams
    donnams Member Posts: 31
    edited November 2006
    Susan,

    I have tested positive for the BRCA2 gene, so I can address part of this....

    If you test and have a TRUE NEGATIVE test (meaning a family gene has already been identified and you've tested negative for that specific gene), then your children have a 0% chance of inheriting the gene. There is no recessive quality to the genes, so you can't pass it along if you don't have it.

    If you are the first in the family to test and get a negative test (despite a strong family history or early age diagnosis), then it is an uninformed negative, meaning there could still be another genetic reason leaving you at a higher risk (this has been in the news recently).

    As for pushing for testing....YES!!!! I had asked FOR YEARS if I could get tested....I was even sent to an oncologist years before my diagnosis who said my risk was only slightly higher than the general populations...no worries.

    After I was dx'd at age 41, I pushed for testing again...this time, given my age at dx, my mom having had cancer at 47 and other cancers on that bloodline, I was able to test and found I was positive.

    Now that I'm positive, my blood relatives have a 50% chance of having the gene....so my daughter has a 50% chance of having the same BRCA2 gene, my sister has already tested (positive), so her kids (boys and girls) have the same risks.

    If you have not only breast and ovarian but also stomach, esophogeal, pancreatic, prostate cancers on the same blood line, get in touch with a certified genetic counselor. They can evaluate whether testing is warranted in your case and can help with the insurance company.

    A good place to start is FORCE (www.facingourrisk.org), a site like this one for men/women with BRCA concerns. There are links there to genetic counselors in your area, a message board, a TONS of great info.

    I'm not checking in here every day, so feel free to pm me if you have questions....

    Hugs,
    Donna
  • donnams
    donnams Member Posts: 31
    edited November 2006
    susan,
    Just read your second post.....colon cancer can also be associated with BRCA2....DEFINITELY get in touch with a counselor and push for testing if you want it! I can provide you with articles that illustrate the link between these other cancers and BRCA2...a genetic counselor will know of the link, but our regular oncs/docs don't often realize that other cancers can be a waving red flag for the BRCA gene mutations....
    Donna
  • mkl48
    mkl48 Member Posts: 350
    edited November 2006

    Remember the new thinking on prostate cancer is not the absolute psa number, but the percentage of rise. Men who have PSAs below 4 still can have PC. The new thinking, not rec, is that men should be tested at 40 and watch the rate and percentage of rise. Obviously those with more history may want to start younger. The PSA test alone is not enough, there is a sub test that gives better info if there is any question.Beth

  • PookieBear
    PookieBear Member Posts: 75
    edited February 2007
    Is the test just a blood test or is there more involved?
    How long does it normally take to get results back?

    Thanks,
  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2007

    It's just a blood test. It took quite a while for me to get results..I was part of a study..took a few weeks.

  • Candyce
    Candyce Member Posts: 65
    edited February 2007
    If you are negative you do not have the genes (that they can now identify) and therefore you cannot pass to daughters. In my case I was positive. As my husbands family had as much BC as mine (our Moms died a day a part when we were 26) he was tested too. He did not have a gene mutation that is known. Obviously something is going on in his family. Either he does not have the gene==it's 50/50 % chance OR he has one they do not know as yet.

    If my daughters choose to be tested (at 25 and 29 and newly married they do not want to know) they will test for the one gene mutation that I tested + for.

    Hope this helps...

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