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Diagnosis of Desmoplastic Melanoma – Stage IIB (so far)

Forums General Melanoma Community Diagnosis of Desmoplastic Melanoma – Stage IIB (so far)

  • Post
    texaninlouisiana
    Participant

      Hi all – I've posted this in a number of places not knowing which forum I was actually supposed to be in so hopefully I'm in the right place now.

      So, here it goes…

      My father was diagnosed with invasive melanoma with the desmoplastic sub-type about 2 weeks ago. Below are some highlights of the report:

      A) Invasive Melanoma of the Scalp – Desmoplastic Type

               – Clark Level IV; Breslow Depth 5.1mm

               – Negative for ulceration

      Hi all – I've posted this in a number of places not knowing which forum I was actually supposed to be in so hopefully I'm in the right place now.

      So, here it goes…

      My father was diagnosed with invasive melanoma with the desmoplastic sub-type about 2 weeks ago. Below are some highlights of the report:

      A) Invasive Melanoma of the Scalp – Desmoplastic Type

               – Clark Level IV; Breslow Depth 5.1mm

               – Negative for ulceration

               – Margins negative

               – One benign sentinel node

      B) Primary tumor: pT4a, 5.1mm depth, no ulceration, mitosis 2/mm2

           Regional Lymph nodes: pN0

           Distant Metastisis: pMX

           Pathologic Stage: IIB

           Lymphovascular and perineural invasion: Not identified.

      I know of only one other person with this sub-type (well, only 1 who replied several days ago — Thanks Kathy!) on this board and I just know there's got to be someone else.

      Like I mentioned, this was today and I'm more concerned with the depth. They tested his blood on the spot which was negative as well as all blood panels (liver, etc.) — I do know that this isn't really that much of a factor in determining though.

      He's set for a CT scan and whatever else is needed and there will most likely be some adjuvant therapy because it was so deep (I'm guessing). Next week, he is also scheduled to meet with his radiologist as well as a geneticist to determine if there is a genetic pattern in our family — which is interesting, considering my grandfather died of pancreatic cancer, his brother died of liver cancer, my uncle is in remission of colon cancer, and other relatives have had other kinds.

      I would say based on what I've read, that the promising factor in my father's case is that it is a sub-type that is usually unlikely to metastasize; however, I still think this sub-type isn't fully understood — and also given that it has a high rate of recurrence.

      So, sorry everyone for the long-winded reply but this is really devasting to my family and I'm the one on the research end. My mother called me earlier and said she started crying when they took off the bandages and it was basically a crater in my father's head. This of course made me upset.

      If ANYONE has had any 1st hand experience, I would appreciate the info, encouragement, etc. We are in the East Texas area and have some really great docs, including lines of communication with MD Anderson for our second opinions, but personal experience would really mean a lot to me.

      THANKS!

    Viewing 5 reply threads
    • Replies
        Nicky
        Participant

          Hi there, I was diagnosed with a Desmoplastic Melanoma Level IV, 3.55 mm depth, (no regression, some lymph infiltrate) at the end of 2005.

          I was told at the time by the oncologist that they treat these types of melanomas like a soft tissue sarcoma and that they are less likely to spread to the lymph nodes compared to other types of melanomas. I was told that it is common that they are presented at a deep level as desmoplastic melanomas can be difficult to diagnose.  

          I was treated with 4 weeks radiation to prevent reoccurence and to date have had no further problems with this particular melanoma.

          I hope that helps.

           

           

          Nicky
          Participant

            Hi there, I was diagnosed with a Desmoplastic Melanoma Level IV, 3.55 mm depth, (no regression, some lymph infiltrate) at the end of 2005.

            I was told at the time by the oncologist that they treat these types of melanomas like a soft tissue sarcoma and that they are less likely to spread to the lymph nodes compared to other types of melanomas. I was told that it is common that they are presented at a deep level as desmoplastic melanomas can be difficult to diagnose.  

            I was treated with 4 weeks radiation to prevent reoccurence and to date have had no further problems with this particular melanoma.

            I hope that helps.

             

             

            Nicky
            Participant

              Hi there, I was diagnosed with a Desmoplastic Melanoma Level IV, 3.55 mm depth, (no regression, some lymph infiltrate) at the end of 2005.

              I was told at the time by the oncologist that they treat these types of melanomas like a soft tissue sarcoma and that they are less likely to spread to the lymph nodes compared to other types of melanomas. I was told that it is common that they are presented at a deep level as desmoplastic melanomas can be difficult to diagnose.  

              I was treated with 4 weeks radiation to prevent reoccurence and to date have had no further problems with this particular melanoma.

              I hope that helps.

               

               

              Dr. Mark
              Participant

                Hello Texan,  Just read your post.  I'm a dentist in Oregon and was diagnosed in July of 2011 with DM.  It is a rare sub-type and in some ways has better long term prognosis than metastatic melanoma.  My lesion was deeper than your dad's and had more mitotic activity which makes my prognosis worse than you dad's.  

                I had surgery to remove the lesion just above my left ear.  They couldn't go deep enough to get it all and so radiation treatment was next step.  One year later, I felt a funny spot on the margin of the surgical excision and it was found to be positive for DM.  I had two surgeries since and the last biopsy report was that the margins on the peripheral border were clear but they didn't go deep enough to get it all.  Because I had a graft to cover the site after surgery, they couldn't remove all the tissue down to the bone as an underlying vascular bed is needed for the graft to survive.  

                My Dermatologist found an ENT surgeon at OHSU in Portland who does a special procedure to get all the cancer and allow for a vascular bed for the survival of the graft.  What this procedure involves is removing all the tissue down to the bone, then removal of the outer layer of the skull to expose the inner bone portion which has a blood supply.  A wound vac device is placed and the site left to develop a proper vascular bed for a later graft to be placed.  The beauty of this procedure is that the wound vac allows time for the biopsy report to come back.  If all the margins are clear, then the graft is scheduled.  If not, more tissue is removed until you get clear margins.  Right now, I'm at the wound vac stage.

                Knowing what I know now, I would have gone with this second procedure first.  It eliminates the need for radiation treatment–which is not guaranteed to kill the remaining DM.  I hope this helps.  God bless you, your dad, and family.

                Dr. Mark
                Participant

                  Hello Texan,  Just read your post.  I'm a dentist in Oregon and was diagnosed in July of 2011 with DM.  It is a rare sub-type and in some ways has better long term prognosis than metastatic melanoma.  My lesion was deeper than your dad's and had more mitotic activity which makes my prognosis worse than you dad's.  

                  I had surgery to remove the lesion just above my left ear.  They couldn't go deep enough to get it all and so radiation treatment was next step.  One year later, I felt a funny spot on the margin of the surgical excision and it was found to be positive for DM.  I had two surgeries since and the last biopsy report was that the margins on the peripheral border were clear but they didn't go deep enough to get it all.  Because I had a graft to cover the site after surgery, they couldn't remove all the tissue down to the bone as an underlying vascular bed is needed for the graft to survive.  

                  My Dermatologist found an ENT surgeon at OHSU in Portland who does a special procedure to get all the cancer and allow for a vascular bed for the survival of the graft.  What this procedure involves is removing all the tissue down to the bone, then removal of the outer layer of the skull to expose the inner bone portion which has a blood supply.  A wound vac device is placed and the site left to develop a proper vascular bed for a later graft to be placed.  The beauty of this procedure is that the wound vac allows time for the biopsy report to come back.  If all the margins are clear, then the graft is scheduled.  If not, more tissue is removed until you get clear margins.  Right now, I'm at the wound vac stage.

                  Knowing what I know now, I would have gone with this second procedure first.  It eliminates the need for radiation treatment–which is not guaranteed to kill the remaining DM.  I hope this helps.  God bless you, your dad, and family.

                  Dr. Mark
                  Participant

                    Hello Texan,  Just read your post.  I'm a dentist in Oregon and was diagnosed in July of 2011 with DM.  It is a rare sub-type and in some ways has better long term prognosis than metastatic melanoma.  My lesion was deeper than your dad's and had more mitotic activity which makes my prognosis worse than you dad's.  

                    I had surgery to remove the lesion just above my left ear.  They couldn't go deep enough to get it all and so radiation treatment was next step.  One year later, I felt a funny spot on the margin of the surgical excision and it was found to be positive for DM.  I had two surgeries since and the last biopsy report was that the margins on the peripheral border were clear but they didn't go deep enough to get it all.  Because I had a graft to cover the site after surgery, they couldn't remove all the tissue down to the bone as an underlying vascular bed is needed for the graft to survive.  

                    My Dermatologist found an ENT surgeon at OHSU in Portland who does a special procedure to get all the cancer and allow for a vascular bed for the survival of the graft.  What this procedure involves is removing all the tissue down to the bone, then removal of the outer layer of the skull to expose the inner bone portion which has a blood supply.  A wound vac device is placed and the site left to develop a proper vascular bed for a later graft to be placed.  The beauty of this procedure is that the wound vac allows time for the biopsy report to come back.  If all the margins are clear, then the graft is scheduled.  If not, more tissue is removed until you get clear margins.  Right now, I'm at the wound vac stage.

                    Knowing what I know now, I would have gone with this second procedure first.  It eliminates the need for radiation treatment–which is not guaranteed to kill the remaining DM.  I hope this helps.  God bless you, your dad, and family.

                Viewing 5 reply threads
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