Seeing Genetic Counselor on Wednesday

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suki1724
suki1724 Member Posts: 60

I got all of the info on family members on both sides, as far back as my parents can remember, is there anything else that I should be asking about? I found out that my maternal grandfather had five sisters, ALL of them had BC. My mom, grandma, and great aunt all had it as well. My mom was tested in 2014 and was negative, surprisingly.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    If you are just talking about your Mom being tested for BRCA and being negative, even if your grandmother was positive your mom only had a 50% chance of inheriting that gene. If your mom is negative you would be negative too unless your dad was also a carrier & you inherited it from him.

    They could possibly also test you for other genes though if your family history suggested another genetic syndrome.

    It is a fascinating experience. My counselor talked to me a long time about lots of things

  • suki1724
    suki1724 Member Posts: 60
    edited April 2016

    yes, my mom is negative, but I thought there were other genes besides BRCA that they are more recently testing for?

  • Angtee15
    Angtee15 Member Posts: 209
    edited April 2016

    Hi Suki,

    I had the Breast Next panel done which tests for 17 genes including BRCA. If your insurance covers it perhaps ask for the more comprehensive testing if they don't already have it planned for you. You have considerable family history and need the whole picture!

    Good luck!

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    Yes, they will look at your family history and if another genetic syndrome is suggested by that history they may choose to test you for other genes. I was tested for CHEK2 and PTEN before I was tested for BRCA because of family history of colon cancer.

  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    I am 38. I wasn't tested for brca. They said I probably didn't have that mutation. But brca only counts for 5-10% of breast cancers. There are others that have a family link but that they can't test for yet. They told me that a further 20% of breast cancers have some familial link.. Like it may be genetic, it may be because of a predisposition to other things, or it may be a combination of other genes. Either way, they don't understand it and can't test for it yet. They thing I am in that bag. I was given a 1/4 chance of getting bc. For my mum (bc at 52) and her mum (bc at 56) it was fatal. For my dads sister it was fatal too (bc 60)And her grabdma. And my dads mum died of ovarian..

    I am having a prophylactic mastectomy on 24 May.

    I don't like my odds. I just want them gone. I am making my choice now, while I have a choice.

    Am here if you want to talk. I feel I am a bit unusual to be having a mastectomy without the brca gene mutation. But I am glad to have the choice and Feel lucky to have the chance to act now xx

  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2016

    plus, tbh I wasn't offered tests other then brca. And if I had I might not take them - I feel my family history is evidence enough of something going on.. I want rid of my risk.. If my mum had been tested and found kauri was maybe I would feel different.. But maybe not, I have my paternal

    Side to contend with too....


    Tests or no tests.. There is so much they don't know yet, and my family tree and it's cancers says enough to me. Tests can only prove what doctors know.. Not what they don't know.. If I make sense?! Any good oncologist will admit they don't know it all. Not nearly.

  • suki1724
    suki1724 Member Posts: 60
    edited April 2016

    I just had my meeting with the genetic counselor and due to not only breast but GI cancers on both sides, I was able to have the 32 panel test, which is the most comprehensive, and covers other mutations besides just BC. I'm happy that I did it but as soon as the blood was drawn, of course the anxiety started. They told me about 4 weeks for results, hoping it's sooner. I'm scheduled for a breast MRI on May 4th and I may push it out three weeks, just so I can deal with one thing at a time, but I'm going to check with the breast surgeon and make sure she's ok with it.

    Did anyone here have the 32 panel test? How long did it take for results?

  • suki1724
    suki1724 Member Posts: 60
    edited April 2016

    No one had the 32 panel test?

  • Momof6littles
    Momof6littles Member Posts: 184
    edited April 2016

    I just had the 26 panel test. They said it would take three weeks. It took just two. Hopefully it will be quicker for you, as well. The wait is difficult.

    I was negative, but the geneticist said it doesn't change family history and so I'm still high risk.

  • suki1724
    suki1724 Member Posts: 60
    edited April 2016

    Hi, thanks for the response. The genetic counselor stressed that even if I'm negative for all the genes, I'm still high risk, if I'm positive, the risk goes even higher than I am now. I also was tested for other cancer mutations as well, GI cancers and thyroid, due to family history, I'm almost more worried about those!

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2016

    Suki, I think I may have had the 20something-gene panel test. Initially, they did a 5-gene panel, which included the BRCA1&2, plus some other less common genes. Since I have a terrible family history--32 individuals with various cancers, including 5 breast cancers, one at age 24 and one male BC. Many died of colon or lung cancers, so the genetics counselor recommended the expanded test. It took about 4 weeks, I think. I ended up having the PALB2 and Chek2 mutations. She estimated that my breast cancer risk had been about 45%. I had both of my older kids tested, since they're in their 20s. DS was negative; DD was positive for both. The genetics counselor estimates her risk of breast cancer at about 58%. Since she is 23, I'm taking her to see my breast surgeon next week to develop a plan for surveillance.

  • suki1724
    suki1724 Member Posts: 60
    edited April 2016

    wow, i'm so sorry that you had to go through all that, and now worries for you daughter. My daughter is turning 24 in June, so I'm glad I was tested in order to figure it out for her if needed. I see that you had a prophylactic mastectomy, are you still taking Femara? Is that because you have ovaries? I had a complete hysterectomy 10 years ago, so ovarian cancer is just about the only thing I'm NOT worried about at the moment.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2016

    Yes, I'm still taking Femara, having no SEs so far. Due to my family's cancer history (did I mention that 2 of my sisters have also had uterine cancer?) I will be having a full hysterectomy, too. I only have one ovary left, having lost the left one to a ginormous ovarian cyst about 15 years ago.

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