Connect
Severe Radiation burns from adverse reaction to mask from treatment
Hello everyone,
I am new to this group and in need of help/advise. I am the only caregiver advocate for my boyfriend, who was diagnosed with squamous cell tongue cancer in July. He underwent surgery at the end of August. He had a partial glossectomy with tongue reconstruction flap. They also removed 44 lymph nodes, one of which tested positive for cancer, but was in capsulized with no spread. The surgery was successful with margins greater than 5mm. We were told by the surgeon that he would not need radiation because of the surgery success and clear margins. After two weeks in the hospital, he was released and we went for a follow up appointment. We did not see the surgeon, but a nurse practitioner who informed with no discussion that the plan had changed and he would require radiation. 30 treatments 5 days a week for six weeks. We were given no explanation and left in shock with this complete change in treatment plan with no explanation.
I had grave concerns about this last minute radiation plan, but we were given very little time to research other options available. To add insult to injury, he was diagnosed while he was in the hospital with a 1.5 mm lesion on his liver that needed treatment. I am very grateful to the surgeon for discovering this in it’s very early stage which makes this easily treated and cured. He was scheduled for a Y90 procedure that was expected to cure this problem.
I, however, had serious objections with moving forward with radiation treatments without having time to look at other less destructive options. Now, two months later, he has weeping third-degree burns on most of his neck that has spread well past the supposed area being radiated. The radio oncologist is attributing this to an unusual reaction to the mask used to keep
him immobile while on the table being radiated. This rash like reaction initially covered his entire face and neck. Even though only the right side of his jaw was supposed to be radiated. Despite this adverse reaction, they continued treatment, and the effects have continued to get worse. I have spoken up repeatedly about my concerns, but continue to be ignored.
The effects from surgery and not hiving him time to heal, then radiation, combined with this reaction to the mask, which seems to be amplifying the radiation damage in places that aren’t even supposed to be radiated are beyond horrible. I do not know what to do. My boyfriend is in pain, despondent, depressed, and has been reliant on me to take care of everything.
Does anyone have any suggestions/advise or a referral. I am afraid they are doing irreparable damage and I feel helpless to stop it.
Like
Helpful
HugInterested in more discussions like this? Go to the Head & Neck Cancer Support Group.
Connect
My husband had cancer in his cheek and 2 lymph nodes were cancerous and an additional one had cancer that was not contained. He had 6 chemotherapy treatment to help make the radiation stronger and 33 radiation treatments. He had a g tube for 7 months. He has recovered and has a machine for treatment to reduce lymphodema. He is eating normal, although he can not open his mouth as wide as he used to.
He was treated at Huntsman Cancer Institute in Salt Lake City.
Please let me know if you need any more information.
So very sorry that you both are suffering through this. My radiation oncologist at Mayo Clinic said that radiation treatment is not the same everywhere. It does depend on the skill of the oncologist as well as technical staff and equipment. I was referred to an experienced head and neck radiation oncologist at the University of Michigan 10 years ago to receive the daily treatment only an hour from home, instead of residing at Mayo for 7 weeks. I had weekly targeted chemo treatments during radiation and wanted to decrease dose due to side effects but the NPs recommended continuing at the same dose. I finished the last few weeks getting IV fluids 2-3 times a week for dehydration. My skin and oral lesions healed quickly once the treatment was done. I second the opinion that he should stop radiation for a break until skin lesions are resolving, and seek out a second opinion. It sounds like some treatment with SSD cream or a medicinal honey is needed to start healing instead of more tissue damage by completing radiation right now. You may have to travel, but a second opinion with a referral center is always the best. Good luck to you both.
-
Like -
Helpful -
Hug
1 ReactionI 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
-
Like -
Helpful -
Hug
2 ReactionsThank you! It does help to hear from other people who have gone through similar situations. There is so much we were not told. By the time I was able to research alternatives and honest information about this it was too late. The radiation oncologist finally admitted a week before treatment was over he had not seen Burns this bad before. That in of it’s self is frightening.
I am concerned about long term side effects from radiation burns this severe, DNA damage and everything that goes with it. Most information I find online is general information and not particularly helpful. I keep
hoping to find anything that can be done to stop/keep all the side effects from occurring (trismis, lymphedema, etc.) other than wait around to see how severe these things get and learn to manage, live with it then.
Since being the sole caretaker for my boyfriend and watching him suffer as he is now I can’t imagine what you have endured through your journey. You are very brave! Thank you for sharing with me. I must admit I am frightened for him regarding the horrible list of long term side effects from this treatment particularly since his burns are so severe, since radiation damages DNA and creates so many residual problems, besides the possibility of reoccurrence, or another cancer from radiation.
-
Like -
Helpful -
Hug
1 ReactionTake it slowly. It is frightening to contemplate what if? But that makes it hard to move forward. Yes there could be complications down the road but they may not happen. The burns will get better and in a few months he will feel better. Not right away but soon
-
Like -
Helpful -
Hug
1 Reaction