Anyone have experience or knowlede about proton therapy?
My 'potentially curative' surgery was a bust (which was quite depressing). The tumor was squashed and cemented to the pelvic sidewall.
It has not invaded the bone. It could not be removed brcause it is lodged behind a network of arteries and veins.
It is getting worse and is putting more compression on my sciatic nerve.
The next step is proton therapy. My insurance just ok'd it as I'll be part of a clinical trial.
I am maxxed out on conventional radiation.
Proton therapy is supposed to be much more precise and focused, causing little damage to surrounding structures.
Potentially it could cause preferations of tje rectum, possibly requiring a temporary colostomy. As I have exquisitely sensative skin I hope this doesn't happen as no one has figured out how to have a bag due to my allergy to adhesives and sometimes to pressure.
It could also make my neuropathy worse (but that's happening anyway) and could cause bone necrosis.
The drs aren't very confident that protons will completely destroy the tumor (since some cells obviously survived conventional radiation) but they hope to drastically reduce the size of the tumor.
If it doesn't work my options are to have another surgery with vascular surgeons and pints and pints of blood. Or I could see which clinical trials I'm elegible for, especally immune therapy ones.
So does anyone have experience with proton therapy? Did it work? What were the side effects--burns a d fatigue like regular radiation?