I haven't posted in several years, I regret. I'm still clear on follow up scans. I remain G-tube dependent.

In the past few weeks a growth on my scalp that started nearly a year ago, diagnosed as a Pilar Cyst, grew in size, and has now been excised. It is malignant. it is a pleomorphic dermal sarcoma, a very rare skin cancer. Has anyone heard of this, or had this diagnosis?

It's found typically in men 70 and older with histories of sun exposure. Additional risk factors include other radiation sources and transplantation. I'm pretty sure the radiation I received 5 years ago is not the cause. Conceivably a replacement heart valve is like a transplant, and a possible cause, but I doubt it.

The surgeon today described an excision of my scalp with removal of all possible malignant tissue, and then a free flap from one of four places. The include forearm, thigh, and latissimus muscle, and one other. Free flap will allow for radiation therapy-- simple skin graft won't, apparently.

Any thoughts?

many thanks, and best wishes

Jon Angel

This is the first time here I have heard if this particular cancer, and can offer no insights. But being about what I suspect is a similar age to you, I have had squamous cell carcinomas on my scalp recently, some of them quite large, which were surgically removed and healed back in by secondary intent. Scalp SCC is usually a function of solar radiation, and my hair thinned early in my life, leaving me with a scalp that the sun had easy access to, especially since I spent many days sitting on a surfboard out in the sun when I was a young man.

It seems curious that they are going to remove it and free flap tissue to it, then radiate it. You would think the excision would remove it all. This must be more aggressive than SCC. Good luck with this, please come back and let us know how things go. B

Thank you for replying. I wish it were SCC or basal cell carcinoma of the scalp-- that would make MOHS surgery possible, and also skin graft rather than free flap. It isn't certain that they will use radiation, but likely. A skin graft would fail if radiated. One surgeon will open the scalp with one to two inch margins (which means a large oval probably seven to eight inches in the long dimension) and the other will reconstruct the scalp with a free flap, insuring a blood supply. I suspect they will use my left latissimus muscle. Between excision and reconstruction they will remove all visible cancerous tissue, and I assume will use a microscopic tool in doing so. That tissue will allow a more thorough pathological study.

They are fairly certain that it is this pleomorphic dermal sarcoma. I can't find any sarcoma support group nor head and neck support group that mentions it. There is a general sarcoma group on Facebook. I can find two case studies which discuss the procedures, and I can also find statements that it is very rare and possibly aggressive

Thank you, I will let you know how it goes. I'm scheduled for the surgery on August 22.

best wishes, Jon Angel