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Severe Radiation burns from adverse reaction to mask from treatment
Head & Neck Cancer | Last Active: Dec 26, 2022 | Replies (16)Comment receiving replies
Thank you so much for reaching out to me. No he is not okay. The burns have gone down below his clavicle and he still has more treatments. No one in radiology seems to have much knowledge and no experience of a mask reaction only that it looks like it is amplifying the radiated area as well as areas that are not supposed to be radiated. His burns are bleeding and continue to worsen. This radio oncologist has not suggested he stop as yours did. I am concerned this extensive damage will create much worse short term and long term problems and even what is documented as normal.
I feel as if I am at my wits end with this entire radiation process. It is beyond frightening.
Replies to "Thank you so much for reaching out to me. No he is not okay. The burns..."
@lja, I'm very sorry that you and your boyfriend are not getting the level of communication necessary to make treatment decisions that you're comfortable with and to deal with these terrible side effects. I might suggest:
A - Contact your hospitals office of patient experience. Most hospitals have a department that will help mediate when you are not satisfied with care and/or communication. It may be called the office of patient experience or patient relations or something similar. You might start with contacting them.
B - Seek a second opinion. Is it possible to seek a second opinion at a major cancer center?
You may also find the tips shared in this discussion helpful for your boyfriend's radiation burns:
- My Dad has terrible burns from radiation. Any suggestions to help? https://connect.mayoclinic.org/discussion/radiation-burns/
In order to get the attention your boyfriend really needs, he needs to let the team know he does not want to continue treatment. My husband was not doing well with his radiation and no one suggested a break, or that he needed checked for infection etc. once he told them he was not continuing treatment, they came up with multiple solutions. The gave him a week break from radiation and he was sent to acute care and admitted because he had an infection and was severely dehydrated
Give it a try
I got extensive burns. The good news is that they clear up a few weeks after. The burnt look lasted a little longer. I used vinegar soaks which made them feel better. Treatment was not stopped. Hang in there
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I'm not saying I'm going to the best Hospital for Cancer, but its on the top 10 in the U.S. think its 2nd anyway, my Oncologist is the Director of Head & Neck, he needs a break from Radiation, sorry I would definitely seek another Oncologist in your area, asap, side efects are bad I'm post radiation since 3/22/22 still getting side effects, its rough..you need to get a 2nd opinion, I feel so bad as I remember the feeling, but when he took me off that week what a relief..please keep me posted
Hugs