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Had a recurrence – desmoplastic melanoma? Sarcoma?
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Had a recurrence – desmoplastic melanoma? Sarcoma?

› Forums › General Melanoma Community › Had a recurrence – desmoplastic melanoma? Sarcoma?

  • Post
    • August 12, 2015 at 1:18 am
    heiditemple
    Participant

      A few weeks ago, I had surgery to remove a lump on my neck that showed up basically right in the middle of where my radical neck dissection had taken place in December 2013. I was originally staged 3C. I went through a clinical trial where I received Yervoy, but I was kicked out of the trial after 6 doses because I developed severe endocrine issues. I got my pathology report back today, and the lump came back malignant. The problem is that they aren't sure what kind of cancer it is.. either it's a desmoplastic melanoma (my original melanoma was NOT desmoplastic), a melanoma recurrence, or a sarcoma. For now, they're calling it a malignant spindle cell tumor because the pathologists aren't sure. Apparently I'm a weird case. I'm headed back to Vanderbilt next week, but I was wondering if maybe anyone had any experience or insight into any of this.

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    • Replies
        • August 13, 2015 at 2:28 am
        CHRISNYC
        Participant

          Heidi,  I'm experienced in having several opinions about pathology. I was treated for melenoma 30 years ago and had no issues after excision of the early detection of a mole.   18 months ago I had symptoms that included a lymph node that was sent for pathology., after several different doctors reviewed the sample I was diognosed with a saroma.  This after mentioning the earlier melenoma.   Anyway I was treated for saroma fo many months with chemotherapy until the lymph swelling was reduced.   Then surgery with new pathology.  Well this time I was told the melenoma was still an issue.  oh now I have melenoma?   Anyway I'm mow completing a study treatment and have been doing well.   Anyway my recommendation is get several opinions and perhaps get additional material tested.  It's not fun to be treated for the wrong deaese.  Keep pushing.  Chris.  

          • August 13, 2015 at 2:28 am
          CHRISNYC
          Participant

            Heidi,  I'm experienced in having several opinions about pathology. I was treated for melenoma 30 years ago and had no issues after excision of the early detection of a mole.   18 months ago I had symptoms that included a lymph node that was sent for pathology., after several different doctors reviewed the sample I was diognosed with a saroma.  This after mentioning the earlier melenoma.   Anyway I was treated for saroma fo many months with chemotherapy until the lymph swelling was reduced.   Then surgery with new pathology.  Well this time I was told the melenoma was still an issue.  oh now I have melenoma?   Anyway I'm mow completing a study treatment and have been doing well.   Anyway my recommendation is get several opinions and perhaps get additional material tested.  It's not fun to be treated for the wrong deaese.  Keep pushing.  Chris.  

              • August 13, 2015 at 3:24 am
              DianaD
              Participant

                I agree with Chris' recommendation.  If I were in your situation, I would seek as many opinions as I could, from lead cancer centers, especially those with melanoma specialties.  

                • August 13, 2015 at 3:24 am
                DianaD
                Participant

                  I agree with Chris' recommendation.  If I were in your situation, I would seek as many opinions as I could, from lead cancer centers, especially those with melanoma specialties.  

                  • August 13, 2015 at 3:24 am
                  DianaD
                  Participant

                    I agree with Chris' recommendation.  If I were in your situation, I would seek as many opinions as I could, from lead cancer centers, especially those with melanoma specialties.  

                  • August 13, 2015 at 2:28 am
                  CHRISNYC
                  Participant

                    Heidi,  I'm experienced in having several opinions about pathology. I was treated for melenoma 30 years ago and had no issues after excision of the early detection of a mole.   18 months ago I had symptoms that included a lymph node that was sent for pathology., after several different doctors reviewed the sample I was diognosed with a saroma.  This after mentioning the earlier melenoma.   Anyway I was treated for saroma fo many months with chemotherapy until the lymph swelling was reduced.   Then surgery with new pathology.  Well this time I was told the melenoma was still an issue.  oh now I have melenoma?   Anyway I'm mow completing a study treatment and have been doing well.   Anyway my recommendation is get several opinions and perhaps get additional material tested.  It's not fun to be treated for the wrong deaese.  Keep pushing.  Chris.  

                    • August 13, 2015 at 8:44 pm
                    DZnDef
                    Participant

                      Ask them to send your sample to another dermapatholgist (maybe Mayo or Stanford) for another opinion.  My first tumor was diagnosed as "atypical spindle cell carcinoid" in my lung.  Doc said 95% likely I was cured by the surgery.  Recurrence just over a year later in the other lung.  Lung needle biopsy said "metastatic malignant melanoma".  So they re-checked the first tumor and …. oops!  That one was melanoma too.  Different cancers respond to different treatments so accurate diagnosis is important.  I had no idea that it would be so challenging for them to figure it out with the tumor sitting right in front of them.

                        • August 14, 2015 at 12:03 am
                        lmhl
                        Participant

                          I agree with Maggie.  Get a second pathology opinion.  I have been to many dermatology conferences and have heard that advice serveral times.  Pathology is not a perfect science.  Worth a second look.

                          • August 14, 2015 at 12:03 am
                          lmhl
                          Participant

                            I agree with Maggie.  Get a second pathology opinion.  I have been to many dermatology conferences and have heard that advice serveral times.  Pathology is not a perfect science.  Worth a second look.

                            • August 14, 2015 at 12:03 am
                            lmhl
                            Participant

                              I agree with Maggie.  Get a second pathology opinion.  I have been to many dermatology conferences and have heard that advice serveral times.  Pathology is not a perfect science.  Worth a second look.

                            • August 13, 2015 at 8:44 pm
                            DZnDef
                            Participant

                              Ask them to send your sample to another dermapatholgist (maybe Mayo or Stanford) for another opinion.  My first tumor was diagnosed as "atypical spindle cell carcinoid" in my lung.  Doc said 95% likely I was cured by the surgery.  Recurrence just over a year later in the other lung.  Lung needle biopsy said "metastatic malignant melanoma".  So they re-checked the first tumor and …. oops!  That one was melanoma too.  Different cancers respond to different treatments so accurate diagnosis is important.  I had no idea that it would be so challenging for them to figure it out with the tumor sitting right in front of them.

                              • August 13, 2015 at 8:44 pm
                              DZnDef
                              Participant

                                Ask them to send your sample to another dermapatholgist (maybe Mayo or Stanford) for another opinion.  My first tumor was diagnosed as "atypical spindle cell carcinoid" in my lung.  Doc said 95% likely I was cured by the surgery.  Recurrence just over a year later in the other lung.  Lung needle biopsy said "metastatic malignant melanoma".  So they re-checked the first tumor and …. oops!  That one was melanoma too.  Different cancers respond to different treatments so accurate diagnosis is important.  I had no idea that it would be so challenging for them to figure it out with the tumor sitting right in front of them.

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