desmoplastic melanoma

[Bambi65]

Anyone here had experience with desmoplastic melanoma?

[missyrand Ambassador]

Bambi65

I am not a caregiver for this particular flavor of melanoma but welcome you to our caregiver support network. Would you like to share more about staging, location ( I think this kind of melanoma is more common on head and neck?), treatment but more importantly, how you are doing in living with this illness?

Peace

Missy

[Bambi65 in reply to missyrand]

I had this 3 years ago, and understood that it was rare to have this type of melanoma. I was just wondering if others had this too and how it was delt with. Mine was on my calf, did not look suspious at all. I told my husband,who is a surgeon, that I had this tiney bump on my leg. It did not have any of the typical markers, no discoloration, nothing. We also happen to be out with two of our friends that are oncologist, both looked at and said its probally a calcium deposit or ????, I dont recall. But both agreed it did not appear to be signafigant. On a whim, while I was having knee surgery, my husband asked the surgeon if he would remove the bump while I was under, just to be sure. Three weeks later, results to everyones shock was this very deep melanoma. Im fine now, after surgery but its always on my mind anytime i have a "bump".

[legallygray]

My husband had desmoplastic melanoma 2 years ago. It was located on his scalp between the hairline and the bald area on top of his head. At this point, his doctors are very pleased that nothing new has shown up. The scar is quite a bit larger than a 50-cent piece. Treatment included Moh's surgery to remove the melanoma and also a graft was placed. The skin for the graft was harvested from near the right clavicle. After all of that healed, this was followed up by radiation, completed on Valentine's Day, 2018. Radiation was done at University of Iowa Holden Cancer Treatment Center. I hope this helps!

[Bambi65 in reply to legallygray]

How did he find it, and how long was it there?

[legallygray in reply to Bambi65]

I just found and read your earlier note about having had it on your leg. This melanoma stuff is so weird. My husband noticed several months earlier that he had a small lump on his head, about the size of a dime. I never noticed it. But he went in with me to my 6-monthly dermatologist appointment to show his lump to our dermatologist - who took one look at it and remarked, "What took you so long to come in about this?!!" (I have fairly frequent dermatologist check ups because I had a melanoma-in-situ on my arm a few years ago - it was a tiny pink dot on my forearm. I blame our pale, fair Irish skin for our skin cancer issues!) My husband had a sarcoma tumor near his shoulder blade a few years earlier and his oncologist reminds him that once a person has had a cancer of any kind, our chances of having another, different cancer increases. Not fun.

[legallygray in reply to legallygray]

Fortunately, my husband's oncologist, Dr. Mo Milhem, at UIHC (Iowa) specializes in both sarcoma and melanoma. He is very realistic with his patients and very supportive and helpful, but always realistic. We have been amazed and very scared at times at this whole experience. At this point, although he is being followed, my husband's medical team is very positive about his outcomes! Both his dedifferentiated pleomorphic liposarcoma and his desmoplastic melanoma were very dangerous and scary, but things are looking good at this point. We just celebrated our 50th wedding anniversary yesterday. We're amazed and thankful for the wonderful medical community support my husband has received.

[missyrand Ambassador in reply to legallygray]

Thanks for sharing your experiences ladies

Missy