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Head currently spinning/trying to understand this.

Forums Pediatric & AYA Melanoma Community Head currently spinning/trying to understand this.

  • Post
    Dlynch
    Participant

      Background:

      During the spring we identified a tiny bump on our now 10 year old son, Liam.  It initially looked like a pimple.  By the time his June birthday wellness visit to his pediatrician it had grown to slightly smaller then a pencil eraser.  Our pediatrician told my wife that it looked to be a fatty tissue growth and she referred us to a pediatric surgeon for removal at Anne Arundel Medical Center(a Johns Hopkins affiliated hospital) in Annapolis MD.  By the time we got thorough initial appointments and scheduling they performed the exciasation the day before Thanksgiving.  During the follow-up appointment our surgeon stated that the initial reports back from the biopsy signaled benign.  Fast forward one month to this past Friday and my wife receives a call from the surgeon explaining that although the initial report said benign the pathologist upon further examination saw something that he didn't like and forward the specimen to Hopkins in Baltimore.  The second opinion from Hopkins reported that it was malignant and likely outside the margins.  He used the word Spitz Nevis.  In a follow-up conversation on Friday with me he stated that the specimen was forwarded to Sloan Kettering in New your for a "Third" look and that we will be scheduled with Hopkins Pediatric Oncologist Dr. Christine Pratilas for the first week in January (when results were expected from SK) to discuss moving forward.  He also stated that he would be putting our son on the schedule for the week of January 15 for tracing of his lymph nodes, additional excization of the original area of the mass and a lymph node biopsy.  Of course all this has us freaked out.  He stated that his condition is extremely rare and that in the 18 years of pediatric surgery with Hopkins my son is only his 5th case.

       

      What has us confused is when I looked up Spitz Nevis it calls it a benign mass.  The surgeon had specifically used the term "Malignant" on several occasions during the conversation.  Needless to say we are a little confused and came here to hopefully get some more information specifically which things to look out for and ask when we meet Dr. Pratilas.  Any help you can provide for us to better understand this would be great.

       

      -Dennis Lynch

    Viewing 14 reply threads
    • Replies
        Janner
        Participant

          Glad you are getting expert help.

          Spitz nevi are benign and very common in kids.  However, Spitz Nevi look almost identical to melanoma under a microscope.  It is extremely difficult to distinguish between the two lesions – one malignant and one benign.  I do know there is a DNA (FISH test) that can often make the diagnosis more clear.  In the DNA test, a Spitz nevi will have normal DNA but melanoma will have lots of defect.  So if all the experts haven't done the FISH DNA test, I'd request it.

          The excision and lymph node biopsy are pretty standard for melanoma.  Even benign lesions can slough cells to the lymph nodes – just so you are aware.  There are some other pediatric individuals on this site.  I would email the MRF asking for any information they have.  Contacts/guidance.  I know they've addressed pediatric melanoma in seminars and research.  Email Tim Turnham (I'm sure there is a link to his email in past posts).  He's the MRF director and can put you in touch with more people/info.

          Hang in there and take one day at a time!

          Janner
          Participant

            Glad you are getting expert help.

            Spitz nevi are benign and very common in kids.  However, Spitz Nevi look almost identical to melanoma under a microscope.  It is extremely difficult to distinguish between the two lesions – one malignant and one benign.  I do know there is a DNA (FISH test) that can often make the diagnosis more clear.  In the DNA test, a Spitz nevi will have normal DNA but melanoma will have lots of defect.  So if all the experts haven't done the FISH DNA test, I'd request it.

            The excision and lymph node biopsy are pretty standard for melanoma.  Even benign lesions can slough cells to the lymph nodes – just so you are aware.  There are some other pediatric individuals on this site.  I would email the MRF asking for any information they have.  Contacts/guidance.  I know they've addressed pediatric melanoma in seminars and research.  Email Tim Turnham (I'm sure there is a link to his email in past posts).  He's the MRF director and can put you in touch with more people/info.

            Hang in there and take one day at a time!

            Janner
            Participant

              Glad you are getting expert help.

              Spitz nevi are benign and very common in kids.  However, Spitz Nevi look almost identical to melanoma under a microscope.  It is extremely difficult to distinguish between the two lesions – one malignant and one benign.  I do know there is a DNA (FISH test) that can often make the diagnosis more clear.  In the DNA test, a Spitz nevi will have normal DNA but melanoma will have lots of defect.  So if all the experts haven't done the FISH DNA test, I'd request it.

              The excision and lymph node biopsy are pretty standard for melanoma.  Even benign lesions can slough cells to the lymph nodes – just so you are aware.  There are some other pediatric individuals on this site.  I would email the MRF asking for any information they have.  Contacts/guidance.  I know they've addressed pediatric melanoma in seminars and research.  Email Tim Turnham (I'm sure there is a link to his email in past posts).  He's the MRF director and can put you in touch with more people/info.

              Hang in there and take one day at a time!

              cancersnewnormal
              Participant

                First of all, let me just say how sorry I am that you have been thrown into such a frightening position. I'm not certain that I can be of much help, but I know that melanoma diagnosis in children is pretty rare. I can understand this causing confusion with pathologists and doctors, who are typically looking for a more common explanation or result. It's very good that there are so many opinions in place, and with some top ranked facilties. I have "cutaneous melanoma", but it is also categorized as "spitzoid". I'd never heard of this, until reading a reseach paper referencing "spitzoid melanoma". A quick search this morning turned up the info below. I was 46 when officially diagnozed with this subtype. Prior to that, I was simply listed as "superficial spreading". However, as you will read below, for patients younger than 20… these skin lesions are more often the benign spitz nevus. Which is likely why so many doctors and pathologists are wanting to confirm absolute diagnosis of your boy's excised skin.

                "Spitzoid melanoma is a subtype of melanoma that clinically and histologically resembles a Spitz nevus. Almost all Spitz tumors occur in patients younger than 20-year-old. The older patients, particularly those older than 20 or 30 years old, have a greater likelihood of malignancy. Clinically, spitzoid melanomas are usually changing amelanotic nodular lesions, and can grow to a diameter of 1 cm or more. They often go clinically undiagnosed because of their wide range of clinical appearances and a lack of pigmentation.

                Spitz tumors commonly affect the extremities and face, but atypical Spitz tumors may also, less frequently, affect other areas such as the back. They may resemble hemangiomas, pyogenic granulomas, xanthogranulomas, and basal cell carcinomas.

                Distinguishing between a Spitz nevus and a spitzoid melanoma can be extremely difficult. Features that support the diagnosis of a spitzoid melanoma are asymmetric shape, diameter greater than 1 cm, a lesion with a deep invasive component, and a high degree of cytologic atypia. "

                cancersnewnormal
                Participant

                  First of all, let me just say how sorry I am that you have been thrown into such a frightening position. I'm not certain that I can be of much help, but I know that melanoma diagnosis in children is pretty rare. I can understand this causing confusion with pathologists and doctors, who are typically looking for a more common explanation or result. It's very good that there are so many opinions in place, and with some top ranked facilties. I have "cutaneous melanoma", but it is also categorized as "spitzoid". I'd never heard of this, until reading a reseach paper referencing "spitzoid melanoma". A quick search this morning turned up the info below. I was 46 when officially diagnozed with this subtype. Prior to that, I was simply listed as "superficial spreading". However, as you will read below, for patients younger than 20… these skin lesions are more often the benign spitz nevus. Which is likely why so many doctors and pathologists are wanting to confirm absolute diagnosis of your boy's excised skin.

                  "Spitzoid melanoma is a subtype of melanoma that clinically and histologically resembles a Spitz nevus. Almost all Spitz tumors occur in patients younger than 20-year-old. The older patients, particularly those older than 20 or 30 years old, have a greater likelihood of malignancy. Clinically, spitzoid melanomas are usually changing amelanotic nodular lesions, and can grow to a diameter of 1 cm or more. They often go clinically undiagnosed because of their wide range of clinical appearances and a lack of pigmentation.

                  Spitz tumors commonly affect the extremities and face, but atypical Spitz tumors may also, less frequently, affect other areas such as the back. They may resemble hemangiomas, pyogenic granulomas, xanthogranulomas, and basal cell carcinomas.

                  Distinguishing between a Spitz nevus and a spitzoid melanoma can be extremely difficult. Features that support the diagnosis of a spitzoid melanoma are asymmetric shape, diameter greater than 1 cm, a lesion with a deep invasive component, and a high degree of cytologic atypia. "

                  cancersnewnormal
                  Participant

                    First of all, let me just say how sorry I am that you have been thrown into such a frightening position. I'm not certain that I can be of much help, but I know that melanoma diagnosis in children is pretty rare. I can understand this causing confusion with pathologists and doctors, who are typically looking for a more common explanation or result. It's very good that there are so many opinions in place, and with some top ranked facilties. I have "cutaneous melanoma", but it is also categorized as "spitzoid". I'd never heard of this, until reading a reseach paper referencing "spitzoid melanoma". A quick search this morning turned up the info below. I was 46 when officially diagnozed with this subtype. Prior to that, I was simply listed as "superficial spreading". However, as you will read below, for patients younger than 20… these skin lesions are more often the benign spitz nevus. Which is likely why so many doctors and pathologists are wanting to confirm absolute diagnosis of your boy's excised skin.

                    "Spitzoid melanoma is a subtype of melanoma that clinically and histologically resembles a Spitz nevus. Almost all Spitz tumors occur in patients younger than 20-year-old. The older patients, particularly those older than 20 or 30 years old, have a greater likelihood of malignancy. Clinically, spitzoid melanomas are usually changing amelanotic nodular lesions, and can grow to a diameter of 1 cm or more. They often go clinically undiagnosed because of their wide range of clinical appearances and a lack of pigmentation.

                    Spitz tumors commonly affect the extremities and face, but atypical Spitz tumors may also, less frequently, affect other areas such as the back. They may resemble hemangiomas, pyogenic granulomas, xanthogranulomas, and basal cell carcinomas.

                    Distinguishing between a Spitz nevus and a spitzoid melanoma can be extremely difficult. Features that support the diagnosis of a spitzoid melanoma are asymmetric shape, diameter greater than 1 cm, a lesion with a deep invasive component, and a high degree of cytologic atypia. "

                    stars
                    Participant

                      What horrible news to get at this time of the year. Hugs to you all, this must be really hard for a parent to deal with.

                      There is a type of benign mole called a spitz naevus – it's uncommon but harmless

                      http://www.dermnetnz.org/topics/spitz-naevus/

                      The problem is, it is hard to clinically or microscopically distinguish a spitz naevus from a spitzoid melanoma

                      http://www.dermnetnz.org/topics/spitzoid-melanoma/

                      Spitzoid melanomas can be aggressive and can quickly invade deeper tissues.

                      It may sound odd, but it is a blessing in disguise that this has been found and is being so thoroughly investigated to determine whether it is a benign spitz naevus or a malignant (and potentially aggressive) spitzoid melanoma. Your doctor has hit the panic button but in the case of possible melanoma, this is a very good thing. With melanoma, earlier is also better – no time is a great time but anytime is better than not knowing at all and only finding out when it metastasises to a node or distant organ.

                      I hope and pray that it turns out to be a spitz naevus after all, and if not that then a spitzoid melanoma caught in it's early stages with a good prognosis. Younger kids like your son fare much better than adults with this type of melanoma, so either way I think your son is in good hands.

                      Hopes and prayers for you all.

                       

                      stars
                      Participant

                        What horrible news to get at this time of the year. Hugs to you all, this must be really hard for a parent to deal with.

                        There is a type of benign mole called a spitz naevus – it's uncommon but harmless

                        http://www.dermnetnz.org/topics/spitz-naevus/

                        The problem is, it is hard to clinically or microscopically distinguish a spitz naevus from a spitzoid melanoma

                        http://www.dermnetnz.org/topics/spitzoid-melanoma/

                        Spitzoid melanomas can be aggressive and can quickly invade deeper tissues.

                        It may sound odd, but it is a blessing in disguise that this has been found and is being so thoroughly investigated to determine whether it is a benign spitz naevus or a malignant (and potentially aggressive) spitzoid melanoma. Your doctor has hit the panic button but in the case of possible melanoma, this is a very good thing. With melanoma, earlier is also better – no time is a great time but anytime is better than not knowing at all and only finding out when it metastasises to a node or distant organ.

                        I hope and pray that it turns out to be a spitz naevus after all, and if not that then a spitzoid melanoma caught in it's early stages with a good prognosis. Younger kids like your son fare much better than adults with this type of melanoma, so either way I think your son is in good hands.

                        Hopes and prayers for you all.

                         

                        stars
                        Participant

                          What horrible news to get at this time of the year. Hugs to you all, this must be really hard for a parent to deal with.

                          There is a type of benign mole called a spitz naevus – it's uncommon but harmless

                          http://www.dermnetnz.org/topics/spitz-naevus/

                          The problem is, it is hard to clinically or microscopically distinguish a spitz naevus from a spitzoid melanoma

                          http://www.dermnetnz.org/topics/spitzoid-melanoma/

                          Spitzoid melanomas can be aggressive and can quickly invade deeper tissues.

                          It may sound odd, but it is a blessing in disguise that this has been found and is being so thoroughly investigated to determine whether it is a benign spitz naevus or a malignant (and potentially aggressive) spitzoid melanoma. Your doctor has hit the panic button but in the case of possible melanoma, this is a very good thing. With melanoma, earlier is also better – no time is a great time but anytime is better than not knowing at all and only finding out when it metastasises to a node or distant organ.

                          I hope and pray that it turns out to be a spitz naevus after all, and if not that then a spitzoid melanoma caught in it's early stages with a good prognosis. Younger kids like your son fare much better than adults with this type of melanoma, so either way I think your son is in good hands.

                          Hopes and prayers for you all.

                           

                          Dlynch
                          Participant

                            Thank you all for your responses.  This has helped us better understand the conversations that we have had with the Dr.  I am confident with the Drs and have been impressed with their diligence so far.  It's just hard to digest all of this.

                            To compound all this my wife, who is a school crossing guard for the county police department was hit by a car yesterday afternoon while she was in a crosswalk wearing a bright yellow green jacket!  She now has a fractured tibia as a result.  I hope this is the last of our holiday surprises!

                            -D

                             

                            Dlynch
                            Participant

                              Thank you all for your responses.  This has helped us better understand the conversations that we have had with the Dr.  I am confident with the Drs and have been impressed with their diligence so far.  It's just hard to digest all of this.

                              To compound all this my wife, who is a school crossing guard for the county police department was hit by a car yesterday afternoon while she was in a crosswalk wearing a bright yellow green jacket!  She now has a fractured tibia as a result.  I hope this is the last of our holiday surprises!

                              -D

                               

                              Dlynch
                              Participant

                                Thank you all for your responses.  This has helped us better understand the conversations that we have had with the Dr.  I am confident with the Drs and have been impressed with their diligence so far.  It's just hard to digest all of this.

                                To compound all this my wife, who is a school crossing guard for the county police department was hit by a car yesterday afternoon while she was in a crosswalk wearing a bright yellow green jacket!  She now has a fractured tibia as a result.  I hope this is the last of our holiday surprises!

                                -D

                                 

                                Dlynch
                                Participant

                                  An Update:

                                  We have our appointment scheduled for 1-3-16 at Hopkins with Dr. Pratilas.

                                  -Dennis

                                  Dlynch
                                  Participant

                                    An Update:

                                    We have our appointment scheduled for 1-3-16 at Hopkins with Dr. Pratilas.

                                    -Dennis

                                    Dlynch
                                    Participant

                                      An Update:

                                      We have our appointment scheduled for 1-3-16 at Hopkins with Dr. Pratilas.

                                      -Dennis

                                  Viewing 14 reply threads
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