Cylindromatosis

51 y.o male with tumor onset at puberty. I am now experiencing a coalescence phase of tumor growth with less-than-satisfactory appearance. I have found a few dermatologic surgeons in Seattle willing to excise chunks of scalp for now, but they are frustrated as well, knowing that it is a stop-gap measure.

I see no posts on this site or reference to this condition by anyone here. Does anyone have this issue? What are you doing about it????

Thx

Don