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Melanoma, pancreatic cancer, and CDKN2A gene mutation
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Melanoma, pancreatic cancer, and CDKN2A gene mutation

› Forums › General Melanoma Community › Melanoma, pancreatic cancer, and CDKN2A gene mutation

  • Post
    • December 16, 2016 at 1:43 am
    Fsudom959
    Participant

      Last year I was diagnosed with stage 2a Melanoma.  I had it removed and am doing fine now.  I recently found out my father (whom I never really knew) and his brother both passed away from pancreatic cancer.  I thought that maybe this is hereditary and googled it.  Has anyone heard of the CDKN2A gene mutation that causes both melanoma and pancreatic cancer in almost 50% of people?  It says it is rare.  Does anyone here have it?  Do you know how much it costs to test for it and if insurance covers it?  I had a BRAF gene mutation test done (my dermatologist sent it out without me knowing) and I got a $2k bill.  Thanks for any help! 

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    • Replies
        • December 16, 2016 at 2:25 am
        Janner
        Participant

          Between 2-4% of the melanoma population have this genetic defect.  It has a much higher risk of melanoma than pancreatic cancer.  The numbers I was given were 76% lifetime risk of melanoma versus 11-17% (depending on type of defect) for pancreatic cancer.  (Numbers may be outdated now).   I've heard of families having this but usually the melanoma element is much stronger and more prominent than the pancreatic side.  That being said, it is possible.  I don't have any idea on the cost.  I had it over 10 years ago as part of a clinical trial.  The BRAF testing is totally different – it is testing a tumor for a treatment option.  The CDKN2A is testing blood for a genetic defect to establish a risk.  Probably still not covered by insurance.  The BRAF is at least treatment related but insurance companies aren't that big on paying for the genetic tests for risk. (Scans either).  The thing is, the test doesn't really tell you that much in practical terms especially if you've had melanoma.  In talking to different docs, none of them I've talked to has encountered anyone who had both cancers.  Does anyone in your family have melanoma?  What about your grandparents generation? 

            • December 16, 2016 at 3:02 am
            Fsudom959
            Participant

              I read on a website that recent reports suggest that pancreatic cancer may have risks as high as 57% for people with the CDKN2A mutation.  I never knew any of my dad's medical history until today, when I found out about him and his brother having pancreatic cancer.  I'm not sure about grandparents on his side.  On my mothers side, my mom had throat cancer, my uncle had lung cancer, and my grandparents lived until late 80s with no cancer.

              • December 16, 2016 at 3:02 am
              Fsudom959
              Participant

                I read on a website that recent reports suggest that pancreatic cancer may have risks as high as 57% for people with the CDKN2A mutation.  I never knew any of my dad's medical history until today, when I found out about him and his brother having pancreatic cancer.  I'm not sure about grandparents on his side.  On my mothers side, my mom had throat cancer, my uncle had lung cancer, and my grandparents lived until late 80s with no cancer.

                • December 16, 2016 at 3:02 am
                Fsudom959
                Participant

                  I read on a website that recent reports suggest that pancreatic cancer may have risks as high as 57% for people with the CDKN2A mutation.  I never knew any of my dad's medical history until today, when I found out about him and his brother having pancreatic cancer.  I'm not sure about grandparents on his side.  On my mothers side, my mom had throat cancer, my uncle had lung cancer, and my grandparents lived until late 80s with no cancer.

                • December 16, 2016 at 2:25 am
                Janner
                Participant

                  Between 2-4% of the melanoma population have this genetic defect.  It has a much higher risk of melanoma than pancreatic cancer.  The numbers I was given were 76% lifetime risk of melanoma versus 11-17% (depending on type of defect) for pancreatic cancer.  (Numbers may be outdated now).   I've heard of families having this but usually the melanoma element is much stronger and more prominent than the pancreatic side.  That being said, it is possible.  I don't have any idea on the cost.  I had it over 10 years ago as part of a clinical trial.  The BRAF testing is totally different – it is testing a tumor for a treatment option.  The CDKN2A is testing blood for a genetic defect to establish a risk.  Probably still not covered by insurance.  The BRAF is at least treatment related but insurance companies aren't that big on paying for the genetic tests for risk. (Scans either).  The thing is, the test doesn't really tell you that much in practical terms especially if you've had melanoma.  In talking to different docs, none of them I've talked to has encountered anyone who had both cancers.  Does anyone in your family have melanoma?  What about your grandparents generation? 

                  • December 16, 2016 at 2:25 am
                  Janner
                  Participant

                    Between 2-4% of the melanoma population have this genetic defect.  It has a much higher risk of melanoma than pancreatic cancer.  The numbers I was given were 76% lifetime risk of melanoma versus 11-17% (depending on type of defect) for pancreatic cancer.  (Numbers may be outdated now).   I've heard of families having this but usually the melanoma element is much stronger and more prominent than the pancreatic side.  That being said, it is possible.  I don't have any idea on the cost.  I had it over 10 years ago as part of a clinical trial.  The BRAF testing is totally different – it is testing a tumor for a treatment option.  The CDKN2A is testing blood for a genetic defect to establish a risk.  Probably still not covered by insurance.  The BRAF is at least treatment related but insurance companies aren't that big on paying for the genetic tests for risk. (Scans either).  The thing is, the test doesn't really tell you that much in practical terms especially if you've had melanoma.  In talking to different docs, none of them I've talked to has encountered anyone who had both cancers.  Does anyone in your family have melanoma?  What about your grandparents generation? 

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