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5 year old child with Spitzoid Melanoma

Forums Pediatric & AYA Melanoma Community 5 year old child with Spitzoid Melanoma

  • Post
    drew5
    Participant
      My baby was just diagnosed with Spitzoid Melanoma on Wednesday. He is at the Huntsman Cancer Institute with Dr. Andtabackca. His surgery will be August 5th but on August 4th they will inject a radioactive dye into his tumor site on his back. They have not given a stage yet. Is that to be determined after the surgery? He had had the tumor for a year and half. The pediatrician thought it was a wart at first, but then it never went away. Any advice on what I should be doing to help my son. I don’t want to reinvent the wheel, so any words of advice/encouragement will be gratefully welcomed!
    Viewing 5 reply threads
    • Replies
        Becky
        Participant

          Hi

          i know that it is very difficult to differentiate between bengn spitz tumors and melanoma even among expert pathologists, so I would make sure the tumor gets a second opinion with a really good pathologist. With my son his was dx twice as melanoma but still sent to an expert (Dr Mihm in Boston I believe) for a third opinion.

          Some doctors/researchers don't even use the term "spitzoid melanoma" believing either it is a benign spitz tumor or melanoma. I am assuming they will do a sentnal node biopsy to determine if anything has spread to lymph nodes. It is also possible that benign tumors can show up in lmph nodes, mimicing melanama. Which is another reason to make sure what the original tumor was.

          Im no expert..but I have done alot of googling on the subject.

          Wishing you well

          Becky

          Becky
          Participant

            Hi

            i know that it is very difficult to differentiate between bengn spitz tumors and melanoma even among expert pathologists, so I would make sure the tumor gets a second opinion with a really good pathologist. With my son his was dx twice as melanoma but still sent to an expert (Dr Mihm in Boston I believe) for a third opinion.

            Some doctors/researchers don't even use the term "spitzoid melanoma" believing either it is a benign spitz tumor or melanoma. I am assuming they will do a sentnal node biopsy to determine if anything has spread to lymph nodes. It is also possible that benign tumors can show up in lmph nodes, mimicing melanama. Which is another reason to make sure what the original tumor was.

            Im no expert..but I have done alot of googling on the subject.

            Wishing you well

            Becky

            Becky
            Participant

              Hi

              i know that it is very difficult to differentiate between bengn spitz tumors and melanoma even among expert pathologists, so I would make sure the tumor gets a second opinion with a really good pathologist. With my son his was dx twice as melanoma but still sent to an expert (Dr Mihm in Boston I believe) for a third opinion.

              Some doctors/researchers don't even use the term "spitzoid melanoma" believing either it is a benign spitz tumor or melanoma. I am assuming they will do a sentnal node biopsy to determine if anything has spread to lymph nodes. It is also possible that benign tumors can show up in lmph nodes, mimicing melanama. Which is another reason to make sure what the original tumor was.

              Im no expert..but I have done alot of googling on the subject.

              Wishing you well

              Becky

                Becky
                Participant

                  Ps..This article about childhood melanoma is kind of long, but I found very informative

                  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797485/

                  Becky
                  Participant

                    Ps..This article about childhood melanoma is kind of long, but I found very informative

                    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797485/

                    Becky
                    Participant

                      Ps..This article about childhood melanoma is kind of long, but I found very informative

                      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797485/

                      Cooper
                      Participant

                        actually the best expert is Boris Bastian at UCSF. Have the slides reviewed for sure.  This is often benigh.

                        Cooper
                        Participant

                          actually the best expert is Boris Bastian at UCSF. Have the slides reviewed for sure.  This is often benigh.

                          Cooper
                          Participant

                            actually the best expert is Boris Bastian at UCSF. Have the slides reviewed for sure.  This is often benigh.

                            Becky
                            Participant

                              Yes, I also agree about Boris Bastian. He tested my sons tumor for gene mutations and his team was very responsive. I know he is an expert on spitz vs melanoma.

                              Becky
                              Participant

                                Yes, I also agree about Boris Bastian. He tested my sons tumor for gene mutations and his team was very responsive. I know he is an expert on spitz vs melanoma.

                                Becky
                                Participant

                                  Yes, I also agree about Boris Bastian. He tested my sons tumor for gene mutations and his team was very responsive. I know he is an expert on spitz vs melanoma.

                                Janner
                                Participant

                                  If Dr. Antebacka hasn't suggested a second opinion by Dr. Boris Bastian, Dr. Bowen at Huntsman would have. They are friends and dr. Bowen has told me in the past that that is what he would do with a Spitz Nevus  diagnosis. If the diagnosis has already been confirmed, then the next step is to test the sentinel node to see if the lesion has spread.  Final staging couldn't happen until at least the node biopsy is done.  Dr. Antebacka is a melanoma specialist but pediatric melanoma is still very rare.

                                  there are other pediatric melanoma patients on here and I also know of a Facebook group as well.

                                    drew5
                                    Participant
                                      Uofsf just confirmed again today that it is malignant melanoma. The fish test said that no genetics are involved. Dr. Andtabackca said there was no swelling of his lymph nodes and from what he could tell there was no sign that it had spread just from looking at him. I hope he is right on that note! He is going to do the sentinel node test and then remove his tissue all on August 5th. This has been pretty hard to wait to know some more answers. Thank you for the link, I just looked it up and there was great information. Any other good links out there? I feel likei do not know very much and I would like to learn all I can. Would you recommend Dr. ANDTABACKCA? I want the best Dr. Of course. Should I ask him for a second opinion?
                                      drew5
                                      Participant
                                        Uofsf just confirmed again today that it is malignant melanoma. The fish test said that no genetics are involved. Dr. Andtabackca said there was no swelling of his lymph nodes and from what he could tell there was no sign that it had spread just from looking at him. I hope he is right on that note! He is going to do the sentinel node test and then remove his tissue all on August 5th. This has been pretty hard to wait to know some more answers. Thank you for the link, I just looked it up and there was great information. Any other good links out there? I feel likei do not know very much and I would like to learn all I can. Would you recommend Dr. ANDTABACKCA? I want the best Dr. Of course. Should I ask him for a second opinion?
                                        Janner
                                        Participant

                                          You can get a second opinion, but I'm not sure who that would be in SLC.  Dirk Noyes is also a surgical oncologist specializing in melanoma.  I doubt there are any pediatric specialists, that probably falls under dr. A.  He was also the onc for the VA where my dad saw him.  At this point, I'm not sure what a second opinion would provide.  I'd probably have the SNB here.  If the results are positive and you are considering treatment options, THAT is when I'd want as much input as possible.  If the SNB is negative, then I'd probably follow up locally.  How deep was the primary?

                                          Janner
                                          Participant

                                            You can get a second opinion, but I'm not sure who that would be in SLC.  Dirk Noyes is also a surgical oncologist specializing in melanoma.  I doubt there are any pediatric specialists, that probably falls under dr. A.  He was also the onc for the VA where my dad saw him.  At this point, I'm not sure what a second opinion would provide.  I'd probably have the SNB here.  If the results are positive and you are considering treatment options, THAT is when I'd want as much input as possible.  If the SNB is negative, then I'd probably follow up locally.  How deep was the primary?

                                            drew5
                                            Participant
                                              I am assuming the primary means how deep the lesion is? :) The local Dermatologist thought it to be 1.6mm at least. He has had it for about a year and a half.
                                              drew5
                                              Participant
                                                I am assuming the primary means how deep the lesion is? :) The local Dermatologist thought it to be 1.6mm at least. He has had it for about a year and a half.
                                                magdalena
                                                Participant
                                                  I know it is a long time ago you wrote about yours son spitzoid melanoma, but I still hope you will se my message. My son I s 7 years old and he has as well spitzoid melanoma. They have found cancer in his lymph nodes as well.
                                                  I just wanted to hear how did it go with your son. How is he now? I am trying to find someone whos child has been trough this. It is so rare in child and it is so difficult for me to find someone who har some experience in this. I live in Denmark and there is no other so young kids with this diseas. I really hope you will read this and write that your kid is fine now :)
                                                  drew5
                                                  Participant
                                                    I am assuming the primary means how deep the lesion is? :) The local Dermatologist thought it to be 1.6mm at least. He has had it for about a year and a half.
                                                    Janner
                                                    Participant

                                                      You can get a second opinion, but I'm not sure who that would be in SLC.  Dirk Noyes is also a surgical oncologist specializing in melanoma.  I doubt there are any pediatric specialists, that probably falls under dr. A.  He was also the onc for the VA where my dad saw him.  At this point, I'm not sure what a second opinion would provide.  I'd probably have the SNB here.  If the results are positive and you are considering treatment options, THAT is when I'd want as much input as possible.  If the SNB is negative, then I'd probably follow up locally.  How deep was the primary?

                                                      drew5
                                                      Participant
                                                        Uofsf just confirmed again today that it is malignant melanoma. The fish test said that no genetics are involved. Dr. Andtabackca said there was no swelling of his lymph nodes and from what he could tell there was no sign that it had spread just from looking at him. I hope he is right on that note! He is going to do the sentinel node test and then remove his tissue all on August 5th. This has been pretty hard to wait to know some more answers. Thank you for the link, I just looked it up and there was great information. Any other good links out there? I feel likei do not know very much and I would like to learn all I can. Would you recommend Dr. ANDTABACKCA? I want the best Dr. Of course. Should I ask him for a second opinion?
                                                      Janner
                                                      Participant

                                                        If Dr. Antebacka hasn't suggested a second opinion by Dr. Boris Bastian, Dr. Bowen at Huntsman would have. They are friends and dr. Bowen has told me in the past that that is what he would do with a Spitz Nevus  diagnosis. If the diagnosis has already been confirmed, then the next step is to test the sentinel node to see if the lesion has spread.  Final staging couldn't happen until at least the node biopsy is done.  Dr. Antebacka is a melanoma specialist but pediatric melanoma is still very rare.

                                                        there are other pediatric melanoma patients on here and I also know of a Facebook group as well.

                                                        Janner
                                                        Participant

                                                          If Dr. Antebacka hasn't suggested a second opinion by Dr. Boris Bastian, Dr. Bowen at Huntsman would have. They are friends and dr. Bowen has told me in the past that that is what he would do with a Spitz Nevus  diagnosis. If the diagnosis has already been confirmed, then the next step is to test the sentinel node to see if the lesion has spread.  Final staging couldn't happen until at least the node biopsy is done.  Dr. Antebacka is a melanoma specialist but pediatric melanoma is still very rare.

                                                          there are other pediatric melanoma patients on here and I also know of a Facebook group as well.

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