Hello All,
(New to the forum- hope this fits in General discussion rather than anywhere else, but please let me know if not!)
I am a 45 year old gay man and was diagnosed with Kaposi Sarcoma in 2020 by my local dermatology. Although it is non-HIV related (I am HIV negative) and initially believed to be "Classic" KS, I neither fit the usual profile or follow the usual trajectory for Classic KS. Through luck, my dermatologist met one of the country's leading AIDS-related cancer doctors and I am now under his care in London. It appears there are a number of men who have sex with men (MSM) who have KS presenting in this way without HIV and no one knows why.
My doctor is surprised by the trajectory of my disease- I have now had 11 lesions removed over the course of the past three years, including multiple from above the waist and on the face (which doesn't fit with usual Classic KS symptoms) and often do not resemble the expected presentation for KS lesions. This means that both dermatology and even the specialist doctors have dismissed lesions which have ended up being KS. It's incredibly frustrating and feels like I'm banging my head against a brick wall sometimes. Thankfully, my dermatologist is of the belief now that any lump should just be whipped out- and every time they've tested positive! I have been tested for autoimmune diseases but seem to have no issues.
Psychologically, I've always been of the belief that dark humour and a gung-ho attitude are best when dealing with this, but at the moment, it just feels like it's endless and is getting tougher. Recently I had a lesion removed from my ear and two days later, had another appear. They are becoming more and more frequent, which worries me, and currently I have a very faint, more plaque like patch on my nose, resembling more the usual, likely KS lesions, which is a first, and has troubled me a bit as excision will mean a massive scar, so am presuming a different treatment route.
I've been struggling to find any others in this situation (and indeed, much about this specific type of KS) and so would love to hear from MSM with non- HIV related KS- but also from anyone else with non-HIV KS and their experience.
Thanks (and sorry for the long first post!)
Hi Dan_77
Looking on the forum there have been a few posts that mention Kaposi sarcoma my experience being very different since my wife has Leiomyosarcoma - still all sarcomas are rare so actually meeting someone with sarcoma is rate enough outside of a specialist sarcoma centre.
I get the comment about dark humour - though not everyone gets it, have you seen Laughter is the best medicine ?
I did also have a quick look to see if there was anything that might help on the sarcoma uk website as they can be quite helpful in this area.
<<hugs>>
Steve
