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.

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. 

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. 

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.

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?

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?

 

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. 

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?  

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