1. < Head & Neck Cancer

Head & neck radiation side effects continue, especially swelling

Posted by jessskoldal @jessskoldal, Jan 23, 2022

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.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

baz123 | @baz123 | Sep 17 9:00am
In reply to @baz123 "Please I have been there and back radiation damage ,chemo ,feeding tube lost 90 lbs .What..." + (show)
@baz123

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

Jump to this post

Thank you

REPLY
Jano | @jano | Sep 15 1:23pm
In reply to @jano "Hi there, I am five years out. Thank goodness no surgery but had 35 rounds of..." + (show)
@jano

Hi there, I am five years out. Thank goodness no surgery but had 35 rounds of radiation and several rounds of aggressive chemotherapy. I still experience side effects and happy to say no swelling. But I have neuropathy, numb cold toes, lack of taste, and hearing /vision was affected, and teeth problems.
But things could be worse. It never goes away. Thankful for those good days.I wish you all success, patience and well wishes
You will see improvements. Takes time. Remember we went to hell and back. Take good care.

Jump to this post

Thank you for the hug. Hope you’re doing good.😀

REPLY
cris2 | @cris2 | Sep 8 11:44am
In reply to @jonesja "Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. Here is..." + (show)
@jonesja

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

Jump to this post

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.

REPLY
jimfitz | @jimfitz | Aug 29 4:47pm
In reply to @baz123 "Please I have been there and back radiation damage ,chemo ,feeding tube lost 90 lbs .What..." + (show)
@baz123

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

Jump to this post

I am open to all options thanks for this information I haven’t seen it before

REPLY
baz123 | @baz123 | Aug 29 8:40am

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

REPLY
2 replies
jimfitz | @jimfitz | Aug 28 9:34am
In reply to @jonesja "Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. Here is..." + (show)
@jonesja

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

Jump to this post

Thank 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.

REPLY
7881188 | @7881188 | Aug 28 9:10am

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…

REPLY
jonesja | @jonesja | Aug 28 6:37am
In reply to @jimfitz "Hi, My name is jim I am 6 weeks out of proton radiation diagnosed with hpv..." + (show)
@jimfitz

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.....

Jump to this post

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

REPLY
2 replies
jimfitz | @jimfitz | Aug 27 11:25pm
In reply to @hrhwilliam "Hi @jimfitz and welcome to the Head and Neck group. The pain moments you are having..." + (show)
@hrhwilliam

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.

Jump to this post

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.

REPLY
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Aug 27 4:27pm
In reply to @jimfitz "Hi, My name is jim I am 6 weeks out of proton radiation diagnosed with hpv..." + (show)
@jimfitz

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.....

Jump to this post

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.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.