extended panel testing

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hyphencollins
hyphencollins Member Posts: 109
edited July 2016 in Genetic Testing

I'm 2 years out from diagnosis and am considering asking my MO about a referral for additional genetic testing. I did test negative for BRCA 1 and BRCA 2 but my paternal grandmother and a paternal cousin also had breast cancer. We were all roughly 40 when diagnosed. My father died young of a head and neck cancer and several other relatives on that side of the family had cancers at young ages. No ovarian or colon cancers that I'm aware of. When they do testing are there typical genes that they test for or do they decide what genes to test based on family history? I'm not sure there are genes that are implicated with this particular constellation of cancers but I wonder. On the other hand, I feel like maybe morbid curiosity isnt a strong reason for testing and Im not sure what difference the info might make in my medical care at this point. Im curious how others have used info on genetic mutations in your medical care (beyond immediate tx decisions since I'm well past that point)?Thanks.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited May 2016

    A good genetic counselor can help you explore these concerns. Having knowledge about cancer causing mutations is not morbid curiosity with the family history you describe. The information could be critical for others such as cousins in addition to your own siblings or offspring (which you may not have because you don't mention any), even unrelated people who could benefit as we advance the understanding of how various factors interact.

    Your young age would seem to indicate something going on. Hopefully insurance would cover extra testing. Get the referral, have the discussion and then decide what to do!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2016

    After several attempts to get my insurance company to pay for an extended panel (at the suggestion of my onc)to no avail, I did the 19 gene Breast and Ovarian Canacer panel from Color Genomics. Here is a link to a bco discussion about it https://community.breastcancer.org/forum/71/topics...

    Best wishes!

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  • hyphencollins
    hyphencollins Member Posts: 109
    edited May 2016

    Thank you so much for your responses. I do have kids and a niece, so you are right that it is worth thinking about. I see my MO in June so I'll talk with her about another referral...

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  • KBeee
    KBeee Member Posts: 5,109
    edited May 2016

    Color Genomics now tests for 30 genes! Same price. I did it when it was 19 genes and am doing it again for the additional ones. We will order it for DH too since he has had melanoma and has extensive family history. Slick, easy process

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2016

    Oh wow! Hmmm. I'll have to think about that. Thanks so much for the info KBeee!

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  • hyphencollins
    hyphencollins Member Posts: 109
    edited May 2016

    hmm, that may be worth taking a look at. Is it easy to understand the results?

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016

    HC - I had an extended panel run at the insistence of my BS (my genetic counselor was initially dead set against going beyond the BRCA1/2 testing). I was surprised to learn that I do carry 2 mutations, one of which carries higher risk for pancreatic cancer as well as breast cancer and possibly ovarian.

    Due to the knowledge of the susceptibility to pancreatic cancer I am on an annual screening protocol that would (we hope) catch any changes at the earliest stages. Had I not had this information I never would have even known about the possibility of screening, much less received a referral to do so.

    I don't have children but have passed this information on to my sibs and my first cousins, as advised by the genetic counselor.

    Each person has to make their own decision, of course, but testing can indeed influence both your own future medical care and the options available to other members of your family. I also found it helpful to gain some idea of why I have bc instead of just wondering...

    As for Color Genomics, it's my understanding that they are very user-friendly. I wouldn't hesitate to refer my family to them - and have done so! I know there are a number of women on this board (including a couple, above) who've used them and I'm sure they will address your question regarding the reports, etc. Good luck as you move through the decision making and process.

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  • hyphencollins
    hyphencollins Member Posts: 109
    edited July 2016

    thanks hopeful. I had to cancel my MO appt so will be following up with her soon.

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