Genetic testing

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farmgirl31
farmgirl31 Member Posts: 6

It's been a long time since I have been on here.. but I have an odd question. I went for a checkup today. No mammo just a check. As the dr was walking us out he asked if I had had genetic testing. I said no. So now he wants to do testing. I'm 4 years out from ending treatment for 3 neg. I did not do chemo; surgeries and raids only for stage 1sh grade 3, 2cm + 1 cm satellite 3 neg. So why do testing now?? How will the info help me? Not even sure I'll be able to have it if insurance doesn't cover it. But I'm confused. I didn't ask these of the dr because I was so shocked. Anyone have any idea why I should do this now??? Or have had testing done this late in the game?

Comments

  • Rfbk
    Rfbk Member Posts: 1
    edited December 2018

    I had cancer in 1997 hormone positive and then in 2015 triple negative. No breast cancer in my family history. Then my sister got ovarian cancer and passed away this year. I got tested and was BRACA 2 and so is my daughter. It was a shock to us. I had my remaining breast removed as well as a complete hysterectomy. My daughter had a hysterectomy and breast reconstruction. We decided to be proactive in this cancer battle and I can say I am very happy I made those decisions. Your doctor is just looking out for you and I would have the test for peace of mind. If you did test positive, you don’t need to have the same surgeries, but it would be a heads up in your medical history for your doctors.

  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited December 2018

    I had triple positive bc in 2010 and then had triple negative in the other breast in 2015. I didn't bother with genetic testing in 2015 as I don't have sisters, daughters or nieces. But my GP asked me a few weeks ago why I didn't have genetic testing done, when I told him about the lack of female relatives, his response was that if I had any of the gene mutations I would be at higher risk of ovarian cancer.

    So - your doctor is just looking out for you.

  • farmgirl31
    farmgirl31 Member Posts: 6
    edited December 2018

    Thank you both for your reply. I appreciate the opportunity to see things in another perspective. Hopefully insurance will cover it and I can be proactive. I sure don't want cancer again!!!

    God bless and Merry Christmas

  • Salamandra
    Salamandra Member Posts: 1,444
    edited December 2018

    I think that knowing genetic mutations could be helpful for men in the family too. Their risk of breast cancer would also increase, and screening for men is so poor. I guess they could also pass it down to their children?

  • ventureval
    ventureval Member Posts: 23
    edited February 2019

    I did genetic testing as my daughter showed positive with the same gene for the same breast cancer gene as me plus colon cancer. What was odd when I got my results everything was Negative. So we have questions for the genetic dr. So weird.

  • farmgirl31
    farmgirl31 Member Posts: 6
    edited February 2019

    Thanks for all your input. I DID do the testing. Insurance didn't cover it but they will let me make payments. We felt we needed to be on the defensive. I have had a cousin with colon cancer and one with breast cancer 2x resulting in her death. Grandfather with prostate cancer, and distant cousin with male breast cancer. Didn't realize all this until we were filling out paperwork for the test. So we got the results last week of the 83 gene panel that included other cancers not just breast....and I have NO mutations!!! What a relief!! You all know the fear a test can put on you. Even if you don't realize it at the time. So I'm planning to not get cancer again. But to be proactive in my health.

    Thanks again for all your support!😊

  • Simbobby
    Simbobby Member Posts: 140
    edited February 2019

    My mother died of breast cancer in 1993 when they were not yet doing genetic testing. Since that time, both of my sisters and myself have been diagnosed with breast cancer - and all three of us negative for the BRACA gene. The test was not covered by insurance. I was simply told that there must be something going on since all 4 women in my family of origin got BC. However it must be a strain that they are unaware of and can’t test for.



  • Flynn
    Flynn Member Posts: 307
    edited February 2019

    Farmgirl, good for you! Hopefully your resuwill help give you some peace of mind :)


    Simbobby, that’s really rough that you and so many members of your family have been hit by bc. I think there’s still a lot to be learned.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2019

    You know, when I was first diagnosed, my intuition told me there was something genetic going on, some reason for premenopausal breast cancer with no family history of breast cancer. I do realize there are many random cases, but I just felt it was not the case with me. I managed to get BRCA testing, it was negative, end of story. But in a roundabout way I later learned I probably had a different genetic mutation (it was found in a tumor biopsy sample) and testing confirmed the germline mutation that is implicated in several types of cancer, some of which my family has had. So then I was able to inform a family member, who had surgery for prevention of uterine cancer, and extra screening and polyp removal for colon cancer. Possibly saved her life. More family members will be tested.

    There are two points I want to make. First, there are other genes than BRCA that can raise one’s risk of breast cancer as well as other cancers. A complete panel of genes, not just BRCA, may be needed. I get so frustrated when I hear women saying they don’t have “the gene” as if only BRCA matters. It's not just BRCA!!! Second, there is recent research that suggests ANY premenopausal breast cancer patient should have a complete cancer genetics panel done. It can impact her treatment and help family members.

    In my own case, if we had known this in 2011, I would have had the panel, and seen that I have a mutation that put me at risk for ovarian and uterine cancer as well as breast cancer. And with this information, I would have gone ahead with removing ovaries and uterus, and taken an aromatase inhibitor instead of the tamoxifen that failed me. I investigated oophorectomy at the time, but all the medical oncologists advised against it as overtreatment.

    Farmgirl, with that family history I think it is wrong of your insurance not to cover testing. Your genetics specialist should appeal. Good news on your results, though! Simbobby, go see a genetics specialist at a good cancer hospital and ask about a larger panel, for more than just BRCA. Salmandra, yes, BRCA can be passed along male and female.

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