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9 year old/ confussed with her dignosis

Forums General Melanoma Community 9 year old/ confussed with her dignosis

  • Post
    dafad777
    Participant

      my daughter is nine years old.she first told me about spot on her ear about a year ago.i really didnt think anything about it because I had no information or edacation on melanoma.I am one of those people that thought this only happens to older people.as time went by the spot started to grow bigger.not fast but slowly.more slowly that it was not that noticeable until it was the size of a pencil eraser.I said to my husband this doesnt look right it almost looked like she tryed to peirce her ear.when we took her to the doctors they looked at it and told us to go see a dermatoligist.unfurtunat

      my daughter is nine years old.she first told me about spot on her ear about a year ago.i really didnt think anything about it because I had no information or edacation on melanoma.I am one of those people that thought this only happens to older people.as time went by the spot started to grow bigger.not fast but slowly.more slowly that it was not that noticeable until it was the size of a pencil eraser.I said to my husband this doesnt look right it almost looked like she tryed to peirce her ear.when we took her to the doctors they looked at it and told us to go see a dermatoligist.unfurtunate getting an appointment with them takes a while.had to wait four months to get in.one day my daughter said look mommy i took a piece of that black thing off my ear.I said to her leave it alone until the dr. looks at it.now i know that its called ulceration.when we saw the dermatoligist she set us up with plastic surgeon to remove the lesion.the pathology report came back melanocytic tumor of uncertain malignant potential.then under comments it said it had caracteristics which has been termed pigmented epithelioid melanocytoma with overlap with melanophagic/animal-type melanoma.after the report was looked at by three different dermapatholigist they recomended she go back and have a wider margin removed 5mm.she had that surgery done right before christmas.that came back with margins free of lesion.she has an appt. to go see the melanoma specilist feb 22.Has anyone heard of this type in children what other treatments will she have.will they do a slnb?

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        Becky
        Participant

          I found this article interesting, it speaks to some of the questions you raise (about SLNB etc) and these kind of ambiguous lesions on children. Im glad you are going to a melanoma specialist, in any case.

          Becky

           

          http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797485/?tool=pubmed

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          Becky
          Participant

            I found this article interesting, it speaks to some of the questions you raise (about SLNB etc) and these kind of ambiguous lesions on children. Im glad you are going to a melanoma specialist, in any case.

            Becky

             

            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797485/?tool=pubmed

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              dafad777
              Participant

                Thank you for this information Ihave been trying to get some information on line and there wasnt much I could find.This helps when i go see the doctor.

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                dafad777
                Participant

                  Thank you for this information Ihave been trying to get some information on line and there wasnt much I could find.This helps when i go see the doctor.

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                EmilyandMike
                Participant

                  Hello –

                  I hope you will contact the other members of the board with children who have melanoma and have dealt with confusing path reports.  

                  Danielle's blog might be helpful (her daughter was 5-6 at diagnosis) and she has started a new site for pediatric melanoma patients  http://iloveyoumorethanmost.blogspot.com/2009/09/spitzoids-are-not-those-things-you-shot.html

                  There is another mother here with a 9 year old with Stage IV (and the only child on Ipi, a new drug)  – http://www.melanoma.org/community/mpip-melanoma-patients-information-page/9-year-old-ipi-0

                  I am sure these moms will say that you should have her path reports looked at by the top melanoma specialists/pathologists around the country.  

                  All my best to you during this scary time.  

                  Emily

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                  EmilyandMike
                  Participant

                    Hello –

                    I hope you will contact the other members of the board with children who have melanoma and have dealt with confusing path reports.  

                    Danielle's blog might be helpful (her daughter was 5-6 at diagnosis) and she has started a new site for pediatric melanoma patients  http://iloveyoumorethanmost.blogspot.com/2009/09/spitzoids-are-not-those-things-you-shot.html

                    There is another mother here with a 9 year old with Stage IV (and the only child on Ipi, a new drug)  – http://www.melanoma.org/community/mpip-melanoma-patients-information-page/9-year-old-ipi-0

                    I am sure these moms will say that you should have her path reports looked at by the top melanoma specialists/pathologists around the country.  

                    All my best to you during this scary time.  

                    Emily

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                      Becky
                      Participant

                        As far as getting the path reports read by experts (which I agree with) I see you are seeing Dr Mihm. When my son was dx (he was 20 at the time) his doctor got a second opinion at UCSF (they said melanoma, as well as the first pathologist). He then sent it to Dr Mihm for a third opinion. He said Dr Mihm is an international expert. His report was a little more ambiguous, possibly melanoma, possibly not..Becuase his snb came back positive, we treated it as melanoma.

                        I guess what i want to say is that, espically with children, even experts may not agree.

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                        Becky
                        Participant

                          As far as getting the path reports read by experts (which I agree with) I see you are seeing Dr Mihm. When my son was dx (he was 20 at the time) his doctor got a second opinion at UCSF (they said melanoma, as well as the first pathologist). He then sent it to Dr Mihm for a third opinion. He said Dr Mihm is an international expert. His report was a little more ambiguous, possibly melanoma, possibly not..Becuase his snb came back positive, we treated it as melanoma.

                          I guess what i want to say is that, espically with children, even experts may not agree.

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                        BNmom
                        Participant
                          My son has the same thing except his is on his right leg. He was DX in 2010. He has had two surgeries and the lesion is back for the third time in the same spot. This time it is coming threw his incision. We have taken him to children’s hospital Boston for one of his surgeries and we will be make another trip. The frustration that I feel…. Will this ever end for him and what else can we do for treatment for him?? Any suggestions???

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                            dafad777
                            Participant
                              So far my daughter hasn’t had any regrowth on the ear but she does have a lession on the pupic area that they are watching.she sees her
                              dermo every six months and sees melanoma specialist once a year.I would say if you can get appt with Dr Martin mihm he’s from mass general Boston.very good Dr.let me know how your son is doing best of luck

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                              dafad777
                              Participant
                                So far my daughter hasn’t had any regrowth on the ear but she does have a lession on the pupic area that they are watching.she sees her
                                dermo every six months and sees melanoma specialist once a year.I would say if you can get appt with Dr Martin mihm he’s from mass general Boston.very good Dr.let me know how your son is doing best of luck

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                                dafad777
                                Participant
                                  So far my daughter hasn’t had any regrowth on the ear but she does have a lession on the pupic area that they are watching.she sees her
                                  dermo every six months and sees melanoma specialist once a year.I would say if you can get appt with Dr Martin mihm he’s from mass general Boston.very good Dr.let me know how your son is doing best of luck

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                                BNmom
                                Participant
                                  My son has the same thing except his is on his right leg. He was DX in 2010. He has had two surgeries and the lesion is back for the third time in the same spot. This time it is coming threw his incision. We have taken him to children’s hospital Boston for one of his surgeries and we will be make another trip. The frustration that I feel…. Will this ever end for him and what else can we do for treatment for him?? Any suggestions???

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                                  BNmom
                                  Participant
                                    My son has the same thing except his is on his right leg. He was DX in 2010. He has had two surgeries and the lesion is back for the third time in the same spot. This time it is coming threw his incision. We have taken him to children’s hospital Boston for one of his surgeries and we will be make another trip. The frustration that I feel…. Will this ever end for him and what else can we do for treatment for him?? Any suggestions???

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