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Oh my. I’m getting ready to begin the proton radiation and they didn’t explain the neck lymphadema to me.
Did you have radiation in your neck as well?
I have that toothpaste and will pick up the mouthwash closer to beginning.
I will be also on Cysplatin which they so far are saying they don’t want to do a Petscan, only CT scans of my head/neck. They “feel sure” it spread to there. That there’s no way microscopic cells did not spread. To me, wouldn’t those cells show up on a petscan???
Replies to "Oh my. I’m getting ready to begin the proton radiation and they didn’t explain the neck..."
I'm a Mayo Rochester patient and it's my understanding that a PET scan is pretty much standard procedure during diagnosis. It can identify cancer anywhere in you body. Seems to me that's something we'd all wanna do ASAP. You cancer team may have a good reason for not doing it but as a patient I can't imagine it. I would rather delay my radiation treatment a few days or weeks and do the PET. If that's the issue.
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Some people get lymphedema and some don't. I had a few affected lymph nodes. The radiation was primarily for my tongue and tonsil, but the radiation angles have both an entry and an exit which can affect the lymph nodes on your neck anyway. It made the skin on my neck very red, dry and irritated. I used CeraVe moisturizing cream for that. It was gone in 10 days.
I had a Petscan before treatment. It is more precise gives a better picture of where cancer cells are. I would insist on the PetScan prior so they can more accurately assess your treatment needs.
Also, the radiation burned my goatee off and also the hair on the back of my neck. Had a odd looking hairline. My goatee started growing back after 5 months. Crazy thing is my formerly all grey whiskers regrew mostly brown. Pretty wild!
Good luck my friend. It will be a miserable few months post treatment, but better than the alternative.