Desmoplastic Melanoma

Btrcup
Btrcup Member Posts: 286
edited March 2014 in Skin Cancer #1
Hi all, I can usually be found in the colorectal cancer discussions (hubby dx), but I have a question for my boss. A year ago he had a pimple like bump on his ear. After it started to bleed, he went to docs. They did biopsy and found to be melanoma. They removed bottom portion of ear and several lymph nodes (which all tested negative). They are now discussing his options of preventive meds (he sees onc 11/18). The type of cancer he has is called desmoplastic melanoma. From what
I've read, it is rare. Is anyone familiar with this? Thanks for listening.

Linda (Baltimore)

Comments

  • Millsgloria
    Millsgloria Member Posts: 3
    #2
    I am a 8 yr.surviror of desmoplaastic melanoma of palate.Had 1/2 of mouth removed,25 radiation treatments,then prosthesis made so I could eat,talk and drink. Am cancer free as far as I know.Radiation destroyed my salivary glands.Yes it is very rare.As far as Drs. could find out I was the 5th. in the world and the only and longest living surviror. They gave me 6 months to 1 yr. and thanks to their help, my Faith in God and my friends and family I am still going strong. Gloria Jean
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • Kate1948
    Kate1948 Member Posts: 5 Member
    #4
    desmoplastic melanoma

    I'm new here, diagnosed with desmoplastic melanoma of the cheek back in February. It's already recurred. Three excisions and two skin grafts but there's still some at the deep margin.  I start 6 weeks of radiation soon. More nervous about this than any excisions and grafts, but it will cure me, I hope. 

  • Kate1948
    Kate1948 Member Posts: 5 Member
    edited July 2016 #5
    desmoplastic melanoma

    Hello, Linda. I've just posted (July 2016) to see if I can find anyone else with desmoplastic melanoma. Mine is in my cheek. It hasn't spread to lymph nodes but is called in-transit because it's spreading along tiny nerves. (I think that's what's going on.) How are you? Did you ever find out more about DM? I'm happy to share what I know. Very best wishes.

  • Craig_Griffin
    Craig_Griffin Member Posts: 52
    #6
    Millsgloria said:

    I am a 8 yr.surviror of desmoplaastic melanoma of palate.Had 1/2 of mouth removed,25 radiation treatments,then prosthesis made so I could eat,talk and drink. Am cancer free as far as I know.Radiation destroyed my salivary glands.Yes it is very rare.As far as Drs. could find out I was the 5th. in the world and the only and longest living surviror. They gave me 6 months to 1 yr. and thanks to their help, my Faith in God and my friends and family I am still going strong. Gloria Jean

    Cancer free

    Faith in God is the key. My cancer support group started with giving me a CD of new age music with a soothing woman's voice narrative to listen to once a day. I spoke out that I preferred not to listen to the CD any more, because I found my own Bible reading to be more soothing, and that for new age music I already had CD's by Enya that were relaxing. Any religiuos orientated discussions were at first "forbidden" in my support group. That was until my diagnosis after radiation was given as "cancer free" from stage 4 throat cancer. After being in this group for 6 months, I was told that at my next Oncologist appointment to ask the Doc again about the diagnosis, so I could quote every word- again it was "cancer free". After that for the first time I was aware of hugging began at the end of each cancer support group meeting. I am alive 8 years later, and glad to be. That is because only each individual person realizes why they want to fight on to live.   -Craig

  • Craig_Griffin
    Craig_Griffin Member Posts: 52
    #7
    Kate1948 said:

    desmoplastic melanoma

    I'm new here, diagnosed with desmoplastic melanoma of the cheek back in February. It's already recurred. Three excisions and two skin grafts but there's still some at the deep margin.  I start 6 weeks of radiation soon. More nervous about this than any excisions and grafts, but it will cure me, I hope. 

    Radiation

    Kate, Hopefully your radiation target area will not be too extensive. I post mostly in Head & Neck cancer but am now here due to a new skin problem that was treated cryogenically at 200 below zero last week. We are waiting for blood test results, and continued treatment. My radiation was for stage 4 throat cancer and very extensive. I reacted well to radiation and chemotherapy. Always stay positive. 

  • Kate1948
    Kate1948 Member Posts: 5 Member
    #8
    Craig_Griffin said:

    Radiation

    Kate, Hopefully your radiation target area will not be too extensive. I post mostly in Head & Neck cancer but am now here due to a new skin problem that was treated cryogenically at 200 below zero last week. We are waiting for blood test results, and continued treatment. My radiation was for stage 4 throat cancer and very extensive. I reacted well to radiation and chemotherapy. Always stay positive. 

    radiation

    Oh, Craig, thanks so much for responding. A voice in the wilderness! The radiation area is my whole left cheek to zap any outlier cells but the cancer remains in a concentrated area at the deep margin. So glad to hear you reacted well to radiation and chemo. I hope the deep skin freeze worked. Yes, always stay positive, and again, Thank You. 

  • ganderwood
    ganderwood Member Posts: 1
    edited October 2016 #9
    Desmoplastic Melanoma

    10-23-2016 --  About 18 mos. ago I was being treated for bulous pempigoid (BP), another rare skin condition which causes blisters and intense itching.  I took the anti-biotic minocycline for about two months and the BP cleared up.  About this time or maybe 6 mos. prior I noticed a small nodule on my neck which I thought to be a small cyst, but to be on the safe side I had my dermatologist examine it, she had not noticed it while treating me for the BP.  She said it should be biopsied, I went to the plastic surgeon who has done previous biopsies and he excised it.  A week later the Patholigist report came back "suspicious for Desmoplastic Melanoma, will send to Univ. of PA. for further clarification, not clear margins."  10 days to 2 weeks later I received a very detailed path report "5.8mm deep, mitotic rate 1, pure desmoplastic melanoma, recommend wide excision."  I was referred to a Surgical Oncologist and 6 weeks after the initial biopsy I had a wide excision which came back with clear margins and no lymph node involvment.  The Surgeon referred me to a Medical Oncologist. After 2 meetings I decided to seek a second opinion as to treatment and went to the OSU James in Columbus Ohio, where one of the Medical Oncolojists was a specialist in Desmoplastic Melanoma.  In the meantime the surgery  was healing nicely, but about six months after the wide excision I felt a growing lump in the scar.  The Medical Oncologist said to wait and see.  I had a long standing appointment with the Surgical Oncologist a week later and he said it should come out, I asked him to call the Medical Oncologist and between them decide the best course of action.  This resulted in another surgery about 3 weeks later.  Lump removed, Desmoplastic melanoma, no clear margins, recommend re-excision.  This wound was too large and the sutures plus glue did not hold, the wound opened up.  The Surgeon said he had to go back and get clear margins and I likely would require a skin graft.  Four weeks after this surgery I was back and had an even wider excision and a skin graft done.  The path report "technically clear margins but at one side less than a millimeter", (should be 100 millimeters).  It has been six (6) weeks and the wound is healing nicely, although there is a big divot in the side of my neck. I have done a bunch of study about this condition and basically know what to expect, however there seems to be a very wide range of outcomes from complete cure to early death, probably based on ones genetic make-up although that is not clear.  Research is not presented with a common format or consistant language, lots of technical abreviations which are not consistant.   In other cases the research is just not far enough along to do a patient any good yet. Will be seeing my Medical Oncologist this week and Surgeon next week.  Will try to add to this post then.

  • Katya
    Katya Member Posts: 2
    #10
    Kate1948 said:

    desmoplastic melanoma

    I'm new here, diagnosed with desmoplastic melanoma of the cheek back in February. It's already recurred. Three excisions and two skin grafts but there's still some at the deep margin.  I start 6 weeks of radiation soon. More nervous about this than any excisions and grafts, but it will cure me, I hope. 

    Also new

     I was diagnosed in August when pathology report came back as desmoplastic melanoma after operation for what was supposedly a sebaceous cyst. At night can be particularly trouble some  with what I get to thinking about. I got surgery preliminary report today, saying was residual melanoma, but margins negative.   I am going to hop kins, with medical oncologist appointment November 3, where I gather we will be discussing radiation. The area is my upper back. Has anyone had experience to tell me what to expect?   Thanks very much. I am blind, so forgive me if I don't put things in the right place here. 

  • Jam18
    Jam18 Member Posts: 1
    #11
    Desmoplastic Melanoma—new diagnosis

    Hello,

    i was diagnosed with pure Desmoplastic melanoma last week. How rare, how frightening! My tumor was very deep. My PET scan came back with no evidence of melanoma spread to distant sites. My sentinel node scan and 2 cm excisision is this week to seek clean margins. I am working on a second opinion appointment at Sloan Kettering within the next two weeks.

    i have my lows, very lows, and highs. I will rally. It would be helpful to connect with others...

    How is everyone doing?

     

  • 4215Garden
    4215Garden Member Posts: 11
    #12
    ganderwood said:

    Desmoplastic Melanoma

    10-23-2016 --  About 18 mos. ago I was being treated for bulous pempigoid (BP), another rare skin condition which causes blisters and intense itching.  I took the anti-biotic minocycline for about two months and the BP cleared up.  About this time or maybe 6 mos. prior I noticed a small nodule on my neck which I thought to be a small cyst, but to be on the safe side I had my dermatologist examine it, she had not noticed it while treating me for the BP.  She said it should be biopsied, I went to the plastic surgeon who has done previous biopsies and he excised it.  A week later the Patholigist report came back "suspicious for Desmoplastic Melanoma, will send to Univ. of PA. for further clarification, not clear margins."  10 days to 2 weeks later I received a very detailed path report "5.8mm deep, mitotic rate 1, pure desmoplastic melanoma, recommend wide excision."  I was referred to a Surgical Oncologist and 6 weeks after the initial biopsy I had a wide excision which came back with clear margins and no lymph node involvment.  The Surgeon referred me to a Medical Oncologist. After 2 meetings I decided to seek a second opinion as to treatment and went to the OSU James in Columbus Ohio, where one of the Medical Oncolojists was a specialist in Desmoplastic Melanoma.  In the meantime the surgery  was healing nicely, but about six months after the wide excision I felt a growing lump in the scar.  The Medical Oncologist said to wait and see.  I had a long standing appointment with the Surgical Oncologist a week later and he said it should come out, I asked him to call the Medical Oncologist and between them decide the best course of action.  This resulted in another surgery about 3 weeks later.  Lump removed, Desmoplastic melanoma, no clear margins, recommend re-excision.  This wound was too large and the sutures plus glue did not hold, the wound opened up.  The Surgeon said he had to go back and get clear margins and I likely would require a skin graft.  Four weeks after this surgery I was back and had an even wider excision and a skin graft done.  The path report "technically clear margins but at one side less than a millimeter", (should be 100 millimeters).  It has been six (6) weeks and the wound is healing nicely, although there is a big divot in the side of my neck. I have done a bunch of study about this condition and basically know what to expect, however there seems to be a very wide range of outcomes from complete cure to early death, probably based on ones genetic make-up although that is not clear.  Research is not presented with a common format or consistant language, lots of technical abreviations which are not consistant.   In other cases the research is just not far enough along to do a patient any good yet. Will be seeing my Medical Oncologist this week and Surgeon next week.  Will try to add to this post then.

    What an epic journey! Sounds

    What an epic journey! Sounds as though you're doing all the best possible. How are you doing?

  • Jodivp
    Jodivp Member Posts: 2
    #13
    Jam18 said:

    Desmoplastic Melanoma—new diagnosis

    Hello,

    i was diagnosed with pure Desmoplastic melanoma last week. How rare, how frightening! My tumor was very deep. My PET scan came back with no evidence of melanoma spread to distant sites. My sentinel node scan and 2 cm excisision is this week to seek clean margins. I am working on a second opinion appointment at Sloan Kettering within the next two weeks.

    i have my lows, very lows, and highs. I will rally. It would be helpful to connect with others...

    How is everyone doing?

     

    Desmoplastic Neurotropic Malignant Melanoma. In remission now.

    Hi there. I know how scared you must be. I was terrified. It was very difficult to accept.  I had Desmoplastic Neurotropic Melanoma.  I was 24 when I was diagoosed the 1st time. I will say that was over 20 years ago. Mine was right below my lip. It’s always Good to get a second opinion. its so rare that sometimes it’s a little hard for doctors. My first doctor missed it. I know you must be so confused, sad and Very mad. i know it’s hard and just try to stay positive (everybody says that) but this is coming from someone who has gone through it. 

  • Jodivp
    Jodivp Member Posts: 2
    #14
    Jam18 said:

    Desmoplastic Melanoma—new diagnosis

    Hello,

    i was diagnosed with pure Desmoplastic melanoma last week. How rare, how frightening! My tumor was very deep. My PET scan came back with no evidence of melanoma spread to distant sites. My sentinel node scan and 2 cm excisision is this week to seek clean margins. I am working on a second opinion appointment at Sloan Kettering within the next two weeks.

    i have my lows, very lows, and highs. I will rally. It would be helpful to connect with others...

    How is everyone doing?

     

    desmoplastic neurotropic malignant melanoma in Remission

    Sorry I did this twice. I’m new. 

  • BettyT
    BettyT Member Posts: 2
    edited July 2018 #15
    Desmoplastic Melanoma

    Hi I’m new here. I was just diagnosed with Desmoplastic Melanoma.. i see the oncologist in the morning. My Dr scared me most by his reaction and how he kept saying he was sorry! All I really know is that the pathology report says that I’m at least st2a and it’s deep. I know I’ll know more tomorrow but with this being so rare how do I know I’m going to get the right treatment? My Dr also said this is all going to happen very fast! What does that mean?  

  • Engraustin
    Engraustin Member Posts: 1
    edited August 2022 #16
    Cancer

     




    i have seen one of my relatves had a cancer.. and she passed away, it was very painful to see her suffering from this disease<a href=Content removed by CSN Moderator

  • mukherjee
    mukherjee Member Posts: 3 Member
    #17
    https://csn.cancer.org/discussion/comment/1636054#Comment_1636054

    I have super super healthy all my life and brown skinned so getting desmoplastic melanoma was plain weird. Docs were surprised as well and kept on saying this is common on a white skins. Oh well it is what it is. I got the surgery and now doing the circulating DNA treatment. Let me know if you need more details on that.

    I don't know if this helps but honestly every case is different , if you ask me. Can any doctor give us any idea for your EXACT case ? The answer is no. All data that is out there is done on groups which might be skewed. I have a software background and the the more I started researching this was amazed to see they are so behind. Do you realize that there is no way anyone can tell you that it had spread without looking at scans and all, which might be late ? Those scans can also be read by different people differently, imagine that. Really no better way, I was surprised.

    I would keep a positive outlook and live life and follow guidelines by let the patient decide on the prognosis in that way they are more committed to the treatment plan.

    • my 2 cents

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