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Head & neck radiation side effects continue, especially swelling
I was diagnosed with Esthesioneuroblastoma in June of 2021. I underwent two surgeries to remove the tumor and repair my skull base. After healing from those surgeries I underwent 30 rounds of radiation therapy to my head and neck. During radiation therapy I experienced brain swelling but with the use of steroids we were able to continue and ultimately complete the full 30 rounds. Since radiation has ended in November I have experienced a myriad of lasting side effects. I was initially told that it would take 6 to 8 weeks to heal from radiation, but I am finding that even this far out (11 weeks) I am still experiencing some pretty significant and frustrating side effects. The most concerning side effect I am experiencing right now is swelling. My face and neck are very swollen but I have noticed that I am experiencing swelling in my arms, legs, hands, shoulders, etc. Pretty much anywhere that can swell has developed swelling although my face and neck are the most noticeable. My oncologist doesn't think this is lymphedema and other issues such as thyroid dysfunction and Cushing's syndrome have been ruled out as well. My oncologist says this is an "inflammatory response" because I was sensitive to the radiation treatments and this will likely take an additional 1 to 3 months to resolve. To me, it just seems like no one really knows what is going on or what to do about it and they're just making guesses. I'm beyond frustrated at this point and am desperately seeking advice from anyone that may have experienced this or is currently experiencing this. Being swollen all the time is extremely uncomfortable and is one of the main reasons that I have been unable to return to work. Though I would not wish this on anyone, I hope someone out there has gone through this or has some advice to offer. I'll take any little bits of information or advice available.
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Hi @jimfitz and welcome to the Head and Neck group. The pain moments you are having on your tongue is typical after radiation for several months if not a few years. Sorry to tell you that but at least it’s just the tongue, not neck, shoulders, jaw, arm or ears which seems to be more common.
I think if the doctors told you what to expect, you might have jumped off a cliff rather than go through this fun house.
It will get better, I promise. The recovery from radiation is the slowest wound recovery imaginable unfortunately.
Chart your improvement on a week to week basis and you will probably see improvement better that way. The eating issues are just something you will have to work out over time. It is rare for any of us to ever return to pre-cancer normal. Hopefully you will find some positives from this experience as most of us have as time goes by. In the meantime, this is a great place for coping ideas and questions to be answered. Courage.
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1 ReactionThanks so much for your reply. I am finding better information here than from initial meetings with doctors. Its always better to talk to someone a little ahead of where you are to find out what’s coming down the line.Even if i knew its not like i had alot of choice in the matter.its just nice to know your not alone in this.which sometimes it feels like. I thank you for reaching out to me and hopefully one day i can help someone understand what they are going through as well.
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1 ReactionHello . I was diagnosed with HPV 16+cancer of base of tongue March 2023.
Here is my story....I am 57. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 14 months out of treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . My neck is still somewhat tight and I have an occasional shooting nerve pain but doesnt last long. I will continue to have a throat scope and CT scan every 3 months for two years. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will get better for you in the next 6 months or so. Some things may not taste the same, you may have some slight neck or throat discomfort and a little less energy but you will be alive. I take the time now to thank God every morning when I get up, go outside more, look at the clouds and stars, etc. You got this. Have Faith
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3 ReactionsMy heart goes out to all of you. My husband finished radiation over a year ago and is still having a very difficult time. The doctor never told him how long it would take or how bad it was likely to be. Pharyngeal HPV cancer. No lymph nodes or surgery involved. Has had feeding tube for over a year and 1/2. Difficulty eating always. It has been a horrifying experience for him and me as his caretaker. If his doc had told him the truth, he would not have willingly gone thru with the radiation and chemo. No one knows how that would have gone of course, no good news anywhere when having cancer. He Lost 40 lbs. and just lost his first tooth and feels he will lose more. Sorry to be so discouraging. As others have stated, he may get better but we feel he is looking at years of course, not months. He is 78 and the future does not look very bright right now. So we keep on keeping on as all must do. Those who believe in god may choose prayer to the god who sent the cancer. He does not…
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2 ReactionsThank you for your reply. I never lost faith just when i was told it is a long recovery i never dreamed it was going to take this long !! I found out quickly the Drs dont want to be pinned down to any time frame. I would just like the swelling to go down so i can get some teeth in and start eating food again.
Please I have been there and back radiation damage ,chemo ,feeding tube lost 90 lbs .What save me was Hyperbaric treatment 60 sessions 2hrs a day x60 days undid all radiation damage and saved my voice box I had HPV tumour on my larynx.Please look into hyperbaric oxygen treatment I cannot say enough about it Saved Me 🤞good luck
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3 ReactionsI am open to all options thanks for this information I haven’t seen it before
My husband has to have a few lymph nodes removed from neck, how bad is that to go through, we’re pretty nervous. He already had treatment and now a couple more show up six months after. Not happy.
Thank you for the hug. Hope you’re doing good.😀
Thank you