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Atypical Spitz Tumor

Forums Pediatric & AYA Melanoma Community Atypical Spitz Tumor

  • Post
    Sgarceneaux
    Participant

    My 11 year old daughter was just diagnosed with an atypical Spitz tumor that started in the scalp and now has moved to the lymph nodes in the neck. The initial pathology was done at UCSF and further test are being done at Sloan Kettering. We are currently seeing our local Pediatric Oncologist/Hematologist who has advised us to hold tight  for the test results to come back and do a PET scan in 2 weeks. I am looking to get a second opinion as not to waste time and he said he would facilitate this for us but I want to make sure I go to the best place for this second opinion and don't waste anymore time. Does anyone have any experience with this type of tumor and where the best place would be to go? Any info would be greatly appreciated. 

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      Janner
      Participant

      My advice would have been to go to UCSF.  Dr. Bastian there and his team have done a lot of research into Spitz tumors/nevus/whatever and that would be my goto place.  Since you have already done that, them I'm unsure who would be the next  best.  Maybe one of the pediatric cancer hospitals?  Dealing with pediatric Spitz isn't the same as dealing with adult melanoma and so the "best" options might not be the same for both groups.  Sorry you and your daughter are dealing with this!

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      Janner
      Participant

      My advice would have been to go to UCSF.  Dr. Bastian there and his team have done a lot of research into Spitz tumors/nevus/whatever and that would be my goto place.  Since you have already done that, them I'm unsure who would be the next  best.  Maybe one of the pediatric cancer hospitals?  Dealing with pediatric Spitz isn't the same as dealing with adult melanoma and so the "best" options might not be the same for both groups.  Sorry you and your daughter are dealing with this!

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      Janner
      Participant

      My advice would have been to go to UCSF.  Dr. Bastian there and his team have done a lot of research into Spitz tumors/nevus/whatever and that would be my goto place.  Since you have already done that, them I'm unsure who would be the next  best.  Maybe one of the pediatric cancer hospitals?  Dealing with pediatric Spitz isn't the same as dealing with adult melanoma and so the "best" options might not be the same for both groups.  Sorry you and your daughter are dealing with this!

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      A
      Participant

      Sorry about your daughter diagnosis.
      Martin Mihm from Mass General is considered as one of the best pathology experts, so maybe if would be worth to contact him for the second opinion. 

      May I ask you how this lesion on the scalp looked like, so you decided to check it?

       

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      A
      Participant

      Sorry about your daughter diagnosis.
      Martin Mihm from Mass General is considered as one of the best pathology experts, so maybe if would be worth to contact him for the second opinion. 

      May I ask you how this lesion on the scalp looked like, so you decided to check it?

       

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      A
      Participant

      Sorry about your daughter diagnosis.
      Martin Mihm from Mass General is considered as one of the best pathology experts, so maybe if would be worth to contact him for the second opinion. 

      May I ask you how this lesion on the scalp looked like, so you decided to check it?

       

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      Becky
      Participant

      We have Kaiser and my sons doctor sent his tumor to UCSF for a second opinion and Dr Mihm at mass General for a third. Since your daughter is already getting a second opinion on the pathology, I would wait for that. UCSF is considered one of the best melanoma centers ( as is Sloan Kettering).

      I do know…from all my tons of research…that it is common for spitz tumors in children to spread to lymph nodes but that does not mean it is necessarily melanoma…just atypical cells that don't go any further.

      hang in there..I know how scary this is!

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      Becky
      Participant

      We have Kaiser and my sons doctor sent his tumor to UCSF for a second opinion and Dr Mihm at mass General for a third. Since your daughter is already getting a second opinion on the pathology, I would wait for that. UCSF is considered one of the best melanoma centers ( as is Sloan Kettering).

      I do know…from all my tons of research…that it is common for spitz tumors in children to spread to lymph nodes but that does not mean it is necessarily melanoma…just atypical cells that don't go any further.

      hang in there..I know how scary this is!

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      Becky
      Participant

      We have Kaiser and my sons doctor sent his tumor to UCSF for a second opinion and Dr Mihm at mass General for a third. Since your daughter is already getting a second opinion on the pathology, I would wait for that. UCSF is considered one of the best melanoma centers ( as is Sloan Kettering).

      I do know…from all my tons of research…that it is common for spitz tumors in children to spread to lymph nodes but that does not mean it is necessarily melanoma…just atypical cells that don't go any further.

      hang in there..I know how scary this is!

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      Fish
      Participant

      Hi

       

      I just read your post and I was amazed as I have the exact same situation. My 11 year old daughter was diagnosed with an atypical spitz tumor on her scalp. We are also sening her slides to UCSF and geting another opinion. We meet next week with 2 plastic sugeons to schedule her surgery to obtain clear margins. I am curious on where things are at with your daughter and what you have earned since our situations are so similar. Any advise????Thanks

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      Fish
      Participant

      Hi

       

      I just read your post and I was amazed as I have the exact same situation. My 11 year old daughter was diagnosed with an atypical spitz tumor on her scalp. We are also sening her slides to UCSF and geting another opinion. We meet next week with 2 plastic sugeons to schedule her surgery to obtain clear margins. I am curious on where things are at with your daughter and what you have earned since our situations are so similar. Any advise????Thanks

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        Sgarceneaux
        Participant

        Sorry for the non response on this in so long but seeing this post now. The test results came back from UCSF as intranodal extension of an atypical Spitz tumor. Which was great news. Since the removal of first the mole on her scalp, 2nd the removal of the lymph node and then 3rd and most recently the removal of another lymph node on the same side we seem to be in a revolving door of a lump is located on the neck, we see the ENT, they remove and send to UCSF for testing and we get the same results. The Spitz tumor continues to spread very slowly. As of now we are trying to figure out what the future holds and if another lymph node is inflamed if we also get that one removed or do we leave them in. The pediatric oncologist really is unsure how to proceed as there is not a ton of info on these things. Just curious as to how things are going on your side?

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      Fish
      Participant

      Hi

       

      I just read your post and I was amazed as I have the exact same situation. My 11 year old daughter was diagnosed with an atypical spitz tumor on her scalp. We are also sening her slides to UCSF and geting another opinion. We meet next week with 2 plastic sugeons to schedule her surgery to obtain clear margins. I am curious on where things are at with your daughter and what you have earned since our situations are so similar. Any advise????Thanks

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