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Pathology Slides Melanoma vs Atypical Spitz Tumor
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Pathology Slides Melanoma vs Atypical Spitz Tumor

› Forums › General Melanoma Community › Pathology Slides Melanoma vs Atypical Spitz Tumor

  • Post
    • February 23, 2016 at 10:46 pm
    Renate
    Participant

      I was recently diagnosed with Spindle Cell Melanoma Stage IIIa, 1.3mm on my inner thigh and microscopic cells found in my SNL.  I was advised that standard care is to get a full lymph node disection in my groin.and follow up with adjuvdent therapy.  This was all done in a community hospital outside of Chicago.

      I saught a second opinion from Northwestern Univ Hospital in Chicago and they reviewed the pathology slides.  After 3 weeks they told me that it was a challenging case and the concensus is a diagnosis of Atypical Spitz Tumor not Melanoma. it is rare and difficult to detect because it looks like melanoma – they did a FISH test and tesetd chromosomes of the tumor and determined it was not melanoma. Its similar to a benign tumor with cancer like tendencies so it can spread to a SNL but thats about it.  They told me no surgery, no treatment and to follow up every 4 months with Ultrasound.

      I am feeling cautioulsy optimistic.  Both Drs said no need for surgery at this point – even the first one since the slides are questionable and if NW is wrong they can catch anything that comes up via ultrasound,

      So I know this is a controversial diagnosis and complex – Does anyone else have an Atypical Spitz Tumor? Do I go with the Univ Hospital?  Do I get a third opinion?

       

    Viewing 17 reply threads
    • Replies
        • February 23, 2016 at 11:14 pm
        jennunicorn
        Participant

          Renate, this is good news! I am glad you got a second opinion. Maybe a third is a good idea? I don't really know much about Spitz other than the good news that it is not melanoma! NW is a good resource for you and I would trust the doctors there. Hopefully someone has some more information on here for you about Spitz tumors.

          All the best,

          Jenn

            • February 23, 2016 at 11:33 pm
            Renate
            Participant

              Thank you Jenn!  Im feeling hopeful but nervous about opposing opinions.

              • February 23, 2016 at 11:43 pm
              jennunicorn
              Participant

                Yeah, I don't blame you for feeling a little nervous, that's why maybe a third opinion would be good, if they say the same thing as NW then that should make it a more concrete diagnosis and make you feel a little better about it.

                • February 23, 2016 at 11:43 pm
                jennunicorn
                Participant

                  Yeah, I don't blame you for feeling a little nervous, that's why maybe a third opinion would be good, if they say the same thing as NW then that should make it a more concrete diagnosis and make you feel a little better about it.

                  • February 23, 2016 at 11:43 pm
                  jennunicorn
                  Participant

                    Yeah, I don't blame you for feeling a little nervous, that's why maybe a third opinion would be good, if they say the same thing as NW then that should make it a more concrete diagnosis and make you feel a little better about it.

                    • February 23, 2016 at 11:33 pm
                    Renate
                    Participant

                      Thank you Jenn!  Im feeling hopeful but nervous about opposing opinions.

                      • February 23, 2016 at 11:33 pm
                      Renate
                      Participant

                        Thank you Jenn!  Im feeling hopeful but nervous about opposing opinions.

                      • February 23, 2016 at 11:14 pm
                      jennunicorn
                      Participant

                        Renate, this is good news! I am glad you got a second opinion. Maybe a third is a good idea? I don't really know much about Spitz other than the good news that it is not melanoma! NW is a good resource for you and I would trust the doctors there. Hopefully someone has some more information on here for you about Spitz tumors.

                        All the best,

                        Jenn

                        • February 23, 2016 at 11:14 pm
                        jennunicorn
                        Participant

                          Renate, this is good news! I am glad you got a second opinion. Maybe a third is a good idea? I don't really know much about Spitz other than the good news that it is not melanoma! NW is a good resource for you and I would trust the doctors there. Hopefully someone has some more information on here for you about Spitz tumors.

                          All the best,

                          Jenn

                          • February 24, 2016 at 1:52 am
                          Becky
                          Participant

                            This sounds similar to what happened with my son. He was dx with spindle cell melanoma that had spread to one lymph node. His doctors sent it to UCSF for a seond opinion and they also said melanoma.

                            Becuase of his age ( 20 ) and the unusual location ( toungue) his doctor then sent it to Mass General for a 3rd opinion. That was " severely atyical spindle cell nevomelanocytic profliferation:borderline tumor"

                            His doctors decided to treat as melanoma  since 2 pathologists said melanoma, the third was inconclusive. He had the surgery and did interferon for a year ( the only thing available at the time)

                            I think since they did the FISH test, you should feel pretty sure. I did tons of research and found lots of articles talking about spitz/spindle cell benign tumors spreading atypical cells to lymph nodes but nowhere else.

                            Sounds like good news to me!

                            • February 24, 2016 at 1:52 am
                            Becky
                            Participant

                              This sounds similar to what happened with my son. He was dx with spindle cell melanoma that had spread to one lymph node. His doctors sent it to UCSF for a seond opinion and they also said melanoma.

                              Becuase of his age ( 20 ) and the unusual location ( toungue) his doctor then sent it to Mass General for a 3rd opinion. That was " severely atyical spindle cell nevomelanocytic profliferation:borderline tumor"

                              His doctors decided to treat as melanoma  since 2 pathologists said melanoma, the third was inconclusive. He had the surgery and did interferon for a year ( the only thing available at the time)

                              I think since they did the FISH test, you should feel pretty sure. I did tons of research and found lots of articles talking about spitz/spindle cell benign tumors spreading atypical cells to lymph nodes but nowhere else.

                              Sounds like good news to me!

                                • February 24, 2016 at 2:31 am
                                Renate
                                Participant

                                  Thank you Becky!!!  I hope your son is doing well and I appreciate the feedback!

                                  • February 24, 2016 at 2:31 am
                                  Renate
                                  Participant

                                    Thank you Becky!!!  I hope your son is doing well and I appreciate the feedback!

                                    • February 24, 2016 at 3:18 am
                                    Becky
                                    Participant

                                      He finished the year of interferon 5 years ago and so far so good!

                                       

                                      • February 24, 2016 at 3:18 am
                                      Becky
                                      Participant

                                        He finished the year of interferon 5 years ago and so far so good!

                                         

                                        • February 24, 2016 at 3:18 am
                                        Becky
                                        Participant

                                          He finished the year of interferon 5 years ago and so far so good!

                                           

                                          • February 24, 2016 at 2:31 am
                                          Renate
                                          Participant

                                            Thank you Becky!!!  I hope your son is doing well and I appreciate the feedback!

                                          • February 24, 2016 at 1:52 am
                                          Becky
                                          Participant

                                            This sounds similar to what happened with my son. He was dx with spindle cell melanoma that had spread to one lymph node. His doctors sent it to UCSF for a seond opinion and they also said melanoma.

                                            Becuase of his age ( 20 ) and the unusual location ( toungue) his doctor then sent it to Mass General for a 3rd opinion. That was " severely atyical spindle cell nevomelanocytic profliferation:borderline tumor"

                                            His doctors decided to treat as melanoma  since 2 pathologists said melanoma, the third was inconclusive. He had the surgery and did interferon for a year ( the only thing available at the time)

                                            I think since they did the FISH test, you should feel pretty sure. I did tons of research and found lots of articles talking about spitz/spindle cell benign tumors spreading atypical cells to lymph nodes but nowhere else.

                                            Sounds like good news to me!

                                            • February 24, 2016 at 2:32 am
                                            JoshF
                                            Participant

                                              Definitely good news and NW is great hospital…assuming you saw Kuzel, Bilmoria or Wayne? Remain vigilant and do follow up as suggested….try to stay out front of anything. Happy that your fortunes changed…wishing you best!!!

                                              • February 24, 2016 at 2:32 am
                                              JoshF
                                              Participant

                                                Definitely good news and NW is great hospital…assuming you saw Kuzel, Bilmoria or Wayne? Remain vigilant and do follow up as suggested….try to stay out front of anything. Happy that your fortunes changed…wishing you best!!!

                                                • February 24, 2016 at 2:32 am
                                                JoshF
                                                Participant

                                                  Definitely good news and NW is great hospital…assuming you saw Kuzel, Bilmoria or Wayne? Remain vigilant and do follow up as suggested….try to stay out front of anything. Happy that your fortunes changed…wishing you best!!!

                                                  • February 24, 2016 at 3:20 am
                                                  Cindyrandy
                                                  Participant

                                                    Hi, how's it going now. Hope everything is ok.

                                                    —Tnfsf9

                                                     

                                                    • February 24, 2016 at 3:20 am
                                                    Cindyrandy
                                                    Participant

                                                      Hi, how's it going now. Hope everything is ok.

                                                      —Tnfsf9

                                                       

                                                      • February 24, 2016 at 3:20 am
                                                      Cindyrandy
                                                      Participant

                                                        Hi, how's it going now. Hope everything is ok.

                                                        —Tnfsf9

                                                         

                                                        • February 24, 2016 at 1:14 pm
                                                        WithinMySkin
                                                        Participant
                                                          Such fantastic news! Im so happy for you! I know you’ve been on a roller coaster of emotions with this diagnosis. At least now you have time to get a third opinion (if you wish) and not feel the rush to hop into treatment. It’s been mentioned before on this site to always have an odd number of docs so you have a tiebreaker – might be a good idea for peace of mind!

                                                          Lauren

                                                          • February 24, 2016 at 1:14 pm
                                                          WithinMySkin
                                                          Participant
                                                            Such fantastic news! Im so happy for you! I know you’ve been on a roller coaster of emotions with this diagnosis. At least now you have time to get a third opinion (if you wish) and not feel the rush to hop into treatment. It’s been mentioned before on this site to always have an odd number of docs so you have a tiebreaker – might be a good idea for peace of mind!

                                                            Lauren

                                                            • February 24, 2016 at 1:14 pm
                                                            WithinMySkin
                                                            Participant
                                                              Such fantastic news! Im so happy for you! I know you’ve been on a roller coaster of emotions with this diagnosis. At least now you have time to get a third opinion (if you wish) and not feel the rush to hop into treatment. It’s been mentioned before on this site to always have an odd number of docs so you have a tiebreaker – might be a good idea for peace of mind!

                                                              Lauren

                                                              • February 25, 2016 at 1:52 am
                                                              Renate
                                                              Participant

                                                                Thank you all for your comments!!!  I went to my tiebreaker today – Dr Richards at Lutheran General.  He completely sided with NW (Dr Wayne) and totally trusted Dr Garami's (dermapath) diagnosis of Atypical Spitz Tumor.

                                                                He said the 2 factors that made him suspect my slides were read wrong in the first place was that my mole was only 1.3 mm and it spread and that the SNL had microscopic cells found in them.  So at this point there is no treatment of any kind – just follow up with the ultrasound and derm appts every 4mos.  

                                                                I was all set to get my lymph nodes out and go thru life with the worry of having Melanoma and possible reoccurrence. I have such mixed emotions – What if I never got the second opinion?  How many other people has this happened to?  I hope this is not a mistake.  My heart also aches for the people that do have melanoma, since I was on the other side of this. I feel cautiously optimistic and humbled.  

                                                                God bless you all and thank you for your support on this journe.  I wish you all the blessing of good news and clean scans.

                                                                XOXO

                                                                 

                                                                • February 25, 2016 at 1:52 am
                                                                Renate
                                                                Participant

                                                                  Thank you all for your comments!!!  I went to my tiebreaker today – Dr Richards at Lutheran General.  He completely sided with NW (Dr Wayne) and totally trusted Dr Garami's (dermapath) diagnosis of Atypical Spitz Tumor.

                                                                  He said the 2 factors that made him suspect my slides were read wrong in the first place was that my mole was only 1.3 mm and it spread and that the SNL had microscopic cells found in them.  So at this point there is no treatment of any kind – just follow up with the ultrasound and derm appts every 4mos.  

                                                                  I was all set to get my lymph nodes out and go thru life with the worry of having Melanoma and possible reoccurrence. I have such mixed emotions – What if I never got the second opinion?  How many other people has this happened to?  I hope this is not a mistake.  My heart also aches for the people that do have melanoma, since I was on the other side of this. I feel cautiously optimistic and humbled.  

                                                                  God bless you all and thank you for your support on this journe.  I wish you all the blessing of good news and clean scans.

                                                                  XOXO

                                                                   

                                                                    • February 25, 2016 at 2:20 am
                                                                    jennunicorn
                                                                    Participant

                                                                      Such good news! I am SO glad you didn't get all your lymph nodes removed and something made you get that second (and now third) opinion. Crazy how life works sometimes, right?! 

                                                                      Wishing you nothing but good news for life! 🙂 

                                                                      • February 25, 2016 at 2:20 am
                                                                      jennunicorn
                                                                      Participant

                                                                        Such good news! I am SO glad you didn't get all your lymph nodes removed and something made you get that second (and now third) opinion. Crazy how life works sometimes, right?! 

                                                                        Wishing you nothing but good news for life! 🙂 

                                                                        • February 25, 2016 at 2:20 am
                                                                        jennunicorn
                                                                        Participant

                                                                          Such good news! I am SO glad you didn't get all your lymph nodes removed and something made you get that second (and now third) opinion. Crazy how life works sometimes, right?! 

                                                                          Wishing you nothing but good news for life! 🙂 

                                                                        • February 25, 2016 at 1:52 am
                                                                        Renate
                                                                        Participant

                                                                          Thank you all for your comments!!!  I went to my tiebreaker today – Dr Richards at Lutheran General.  He completely sided with NW (Dr Wayne) and totally trusted Dr Garami's (dermapath) diagnosis of Atypical Spitz Tumor.

                                                                          He said the 2 factors that made him suspect my slides were read wrong in the first place was that my mole was only 1.3 mm and it spread and that the SNL had microscopic cells found in them.  So at this point there is no treatment of any kind – just follow up with the ultrasound and derm appts every 4mos.  

                                                                          I was all set to get my lymph nodes out and go thru life with the worry of having Melanoma and possible reoccurrence. I have such mixed emotions – What if I never got the second opinion?  How many other people has this happened to?  I hope this is not a mistake.  My heart also aches for the people that do have melanoma, since I was on the other side of this. I feel cautiously optimistic and humbled.  

                                                                          God bless you all and thank you for your support on this journe.  I wish you all the blessing of good news and clean scans.

                                                                          XOXO

                                                                           

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