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Atypical Spitz Tumor
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Atypical Spitz Tumor

› Forums › Pediatric & AYA Melanoma Community › Atypical Spitz Tumor

  • Post
    • April 7, 2016 at 2:03 pm
    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. 

    Viewing 11 reply threads
    • Replies
        • April 7, 2016 at 3:11 pm
        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!

          • April 7, 2016 at 3:11 pm
          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!

            • April 7, 2016 at 3:11 pm
            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!

              • April 7, 2016 at 7:15 pm
              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?

                 

                • April 7, 2016 at 7:15 pm
                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?

                   

                  • April 7, 2016 at 7:15 pm
                  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?

                     

                    • April 8, 2016 at 3:54 pm
                    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!

                      • April 8, 2016 at 3:54 pm
                      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!

                        • April 8, 2016 at 3:54 pm
                        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!

                          • October 5, 2016 at 12:51 pm
                          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

                              • January 11, 2018 at 12:33 am
                              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?

                              • October 5, 2016 at 12:51 pm
                              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

                                • October 5, 2016 at 12:51 pm
                                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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