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Spitz tumors / genetic testing for melanoma?

Forums General Melanoma Community Spitz tumors / genetic testing for melanoma?

  • Post
    cece
    Participant

      Hello,

      I was diagnosed last year with stage 1B (0.8mm, no ulcertaion, mitotic >1). The dermatologist I was seeing at the time told me it was nothing, despite my long, long history of atypical moles and having voiced my concerns to him about it being darker than other moles and scabby. I went back because it was still on my mind and sure enough, it was melanoma. Always be your own advocate!  Anyway, about ten years ago, I had two pinkish moles removed that turned out to be spitz tumors, both on my legs. They had been there as long as I could remember. There's not a lot out there on spitz tumors, other than that back in the day doctors called them "juvenile melanomas." Has anyone heard of a connection between spitz tumors and the chance of developing melanomas at other sites on the body? Also, does anyone have experience with the genetic testing to see if you have a gene that indicates you (and your children) are more likely to develop melanoma? Does insurance usually cover this test? I hear a lot in the new about the breast cancer and ovarian cance gene test, but not so much about the melanoma one.

      Thanks!

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    • Replies
        slatman
        Participant

          I had the decision-dx melanoma test which insurance did not cover. I felt that the test was a better guide for staging than traditional staging methods. The downside at the time and maybe still was the lack of a big study I think there were 400 or so cases tested at the time.

          slatman
          Participant

            I had the decision-dx melanoma test which insurance did not cover. I felt that the test was a better guide for staging than traditional staging methods. The downside at the time and maybe still was the lack of a big study I think there were 400 or so cases tested at the time.

              cece
              Participant

                Thanks. My oncologist submitted my tumor for DecisionDx last spring, but unfortunately I was told it didn't meet their quality standard specifications and therefore they couldn't run the test. I was so disappointed as I was hoping to hear I was in the 3% group. Now it's just wait and see…

                cece
                Participant

                  Thanks. My oncologist submitted my tumor for DecisionDx last spring, but unfortunately I was told it didn't meet their quality standard specifications and therefore they couldn't run the test. I was so disappointed as I was hoping to hear I was in the 3% group. Now it's just wait and see…

                  cece
                  Participant

                    Thanks. My oncologist submitted my tumor for DecisionDx last spring, but unfortunately I was told it didn't meet their quality standard specifications and therefore they couldn't run the test. I was so disappointed as I was hoping to hear I was in the 3% group. Now it's just wait and see…

                  slatman
                  Participant

                    I had the decision-dx melanoma test which insurance did not cover. I felt that the test was a better guide for staging than traditional staging methods. The downside at the time and maybe still was the lack of a big study I think there were 400 or so cases tested at the time.

                    Janner
                    Participant

                      The reason Spitz nevi are termed juvenile melanoma is not because they are really related to melanoma…. but they LOOK like melanoma under the microscope.  Spitz nevi are totally benign.  It is very difficult to distinguish between the two for the pathologist.  However, Spitz nevi are common in children and not in adults so age does play a part.  I have never seen anything that says having Spitz nevi puts you are higher risk for melanoma later.  

                      As far as genetic testing, they believe that only around 10% of melanoma primaries are formed from genetic defects – the rest develop sporadically.  Melanoma can run in families and still not be from a genetic defect but from shared high risk characteristics like hair color, skin type and sun exposure.  True genetic defects would show up in every generation and for the clinical trial I was on, they wouldn't even let you participate unless you had 3 relatives with melanoma in multiple generations.  So unless you have a very strong family history of melanoma (parents, grandparents), it's unlikely that you carry a genetic defect for the disease.  If you have had melanoma, though, your family is at higher risk to start.  Not HIGH risk, but higher risk than the general population.  If your kids are fair, red headed, blue eyes, easily burn — they are at higher risk than the general population to start.  If you have dysplastic nevus syndrome, you are at higher risk for melanoma, but there isn't a single gene (genetic defect) associated with that syndrome.  Genetic testing is usually not covered under any insurance.

                      Janner
                      Participant

                        The reason Spitz nevi are termed juvenile melanoma is not because they are really related to melanoma…. but they LOOK like melanoma under the microscope.  Spitz nevi are totally benign.  It is very difficult to distinguish between the two for the pathologist.  However, Spitz nevi are common in children and not in adults so age does play a part.  I have never seen anything that says having Spitz nevi puts you are higher risk for melanoma later.  

                        As far as genetic testing, they believe that only around 10% of melanoma primaries are formed from genetic defects – the rest develop sporadically.  Melanoma can run in families and still not be from a genetic defect but from shared high risk characteristics like hair color, skin type and sun exposure.  True genetic defects would show up in every generation and for the clinical trial I was on, they wouldn't even let you participate unless you had 3 relatives with melanoma in multiple generations.  So unless you have a very strong family history of melanoma (parents, grandparents), it's unlikely that you carry a genetic defect for the disease.  If you have had melanoma, though, your family is at higher risk to start.  Not HIGH risk, but higher risk than the general population.  If your kids are fair, red headed, blue eyes, easily burn — they are at higher risk than the general population to start.  If you have dysplastic nevus syndrome, you are at higher risk for melanoma, but there isn't a single gene (genetic defect) associated with that syndrome.  Genetic testing is usually not covered under any insurance.

                          cece
                          Participant

                            Thank you, very helpful info!

                            cece
                            Participant

                              Thank you, very helpful info!

                              cece
                              Participant

                                Thank you, very helpful info!

                              Janner
                              Participant

                                The reason Spitz nevi are termed juvenile melanoma is not because they are really related to melanoma…. but they LOOK like melanoma under the microscope.  Spitz nevi are totally benign.  It is very difficult to distinguish between the two for the pathologist.  However, Spitz nevi are common in children and not in adults so age does play a part.  I have never seen anything that says having Spitz nevi puts you are higher risk for melanoma later.  

                                As far as genetic testing, they believe that only around 10% of melanoma primaries are formed from genetic defects – the rest develop sporadically.  Melanoma can run in families and still not be from a genetic defect but from shared high risk characteristics like hair color, skin type and sun exposure.  True genetic defects would show up in every generation and for the clinical trial I was on, they wouldn't even let you participate unless you had 3 relatives with melanoma in multiple generations.  So unless you have a very strong family history of melanoma (parents, grandparents), it's unlikely that you carry a genetic defect for the disease.  If you have had melanoma, though, your family is at higher risk to start.  Not HIGH risk, but higher risk than the general population.  If your kids are fair, red headed, blue eyes, easily burn — they are at higher risk than the general population to start.  If you have dysplastic nevus syndrome, you are at higher risk for melanoma, but there isn't a single gene (genetic defect) associated with that syndrome.  Genetic testing is usually not covered under any insurance.

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