Head & neck radiation side effects continue, especially swelling

My 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…

Hello . 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

Thanks 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.

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.

Hi, My name is jim I am 6 weeks out of proton radiation diagnosed with hpv related cancer. found a lump in my neck while in the shower went to have it looked at general practitioner said swollen gland don't worry. After it didn't go away i went to a ENT i had gone to many years ago he said better get a biopsy of this. Came back HPV related cancer. I met with many doctors seeking out the best treatment. Eventually ended up going with Emory here in Atlanta. Had the surgery on 4/2/2024 the 5 days a week for 5 weeks of proton radiation. I am now 6 weeks out and have some major side effects. Most annoying is sharp stabbing pain to my right side tongue. Same side as the radiation. Comes on with no notice lasts only a few seconds but it is extremely painful. My neck also is quite tight the surgeon had turned a saliva gland sideways to cover hole where tonsil was. removed 30 lymph nodes after testing only 1 contained cancer.I seem to swallow ok i haven't had a solid meal since surgery no teeth have to puree everything trouble opening mouth to full expansion as i used too. i have a Thera byte but am at or past the full extension of it and without teeth cant make it go much more. i thought i would be alot further on the road to recovery than i am, after reading here im not even 1/2 way there which is pretty discouraging. Ive been on pureed meals for 5 months now and i have another 5 to go !! its getting to be a little much. Not that i have much choice i want to put this behind me but it seems one step forward two back.....

Jess, It’s been a little over a year now for you. We would imagine you are doing better. It is normally a long time to recovery and even two years or longer is more common than not. What you have been through has not been a picnic. If you have questions or concerns we are still here. Don’t hesitate to ask.

Tell her to hang in there as radiation is well worth it. I had angiosarcoma on my cheek removed in 2012 with clear margins. Then 30 treatments of radiation to insure no stray cells were left. I have been cancer free until this year when it came back adjacent to that site. This is beating the odds for AS and I attribute it to the radiation and early discovery ( both times). Best wishes to her.

I am so happy to discover this site. My daughter-in-law, age 40 was diagnosed a month ago with angiosarcoma of the scalp. She lives in Japan with my son and 2 small children. They tried to get her qualified for the experimental radiation program in Japan but the lesion was removed on her scalp and they can't find any margins of cancer. Today, 4-4-23, she started the traditional radiation treatment. She will undergo treatment 5 days a week until 5-26-23 which is their 18th wedding anniversary. Her scalp continuously bleeds and that has been so frustrating for her. Hopefully, I can gain some helpful information on this site to pass on to my children.

Mine took several months to finally close up, I recall being very concerned but my ENT doc did say some take longer than others. 12 months does sound really excessive to me though. I understand your concern about another procedure for sure. What does his doctor say, can you get a second opinion? Please let us know what you choose and how your husband is doing. Praying all goes smoothly.
Lynn

Have you experienced any issues with the stoma closure? My husband’s stoma has never closed 12 months after trach was removed. He is always spitting out mucous from the stoma. We hesitate to have the procedure done to close it due to fear of aspiration.