Radiation side effects 1 1/2 year after treatment.

The Cincinnati Kid

Good day all . My treatment 1 1/2 years ago was surgery followed by 33 days of radiation and 3 doses of chemo. Of course had the usual side effects....difficulty eating / lack of saliva / loss of taste etc but after 1 1/2 yrs I felt I had largely recovered maybe back to 80% normal.

Now though, a new wrinkle and I was wondering if anyone else had experienced this and what you did, if anything, about it.

Started with a sore throat about 3 months back which lasted about 2 months and really gave me eating difficulties, like I'd been sent back in time to those days immediately after radiation treatment. Anyhow, after various meds, a PET scan and a Barium swallow test, I'm left with a diagnosis of swelling and hardening of muscle tissue in the throat area due to radiation side effects.

At this time, the worst of it is over and I'm eating fairly normally again but the swelling is still there and whilst the physical act of swallowing is fine, the results are mixed...sometimes food just doesn't want to go down, sometimes this leads to coughing / hacking fits.... basically...my table manners are appalling! Anyhow...suggested treatment from the swallow test doc is physical therapy. I haven't yet seen the Ear / Nose / Throat doc that has been looking after me post cancer treatment.

Anyone else done this physical therapy?.....I kinda got the impression that every patient that has this Barium swallow test gets recommended for this physical theapy.....much like everyone that goes for sleep test gets recommended a CPAP machine. So I was wondering if anyone had done this and did you see any value in it?...Thanks.

wbcgaruss

Well, Kid, welcome back to the forum and glad to get an update on you, but sorry you are having some issues. I am glad your PET scan was clear. This is certainly not unusual as the radiation around the head and neck area can over time affect swallowing and other functions. I myself recently in early September of last year was called to come to the Hospital and receive treatment for something recently spotted on a CT scan. While there they noticed I had lost weight. I was given a swallow test and failed. They recommended a feeding tube so I left the hospital with my original problem was taken care of and a feeding tube. Also, they set me up with a speech therapist and I had 8 sessions with her doing and learning swallowing exercises and getting bio-feedback during and along with these exercises which help you understand the most effective method of doing the exercises and lets you see your improvements. This has helped me very much and I would recommend having your docs assign you to a speech therapist to address your swallowing and coughing problems, it has certainly helped me swallow again better and virtually eliminated my coughing but not completely but quite an improvement. Speech Therapists deal with all functions Head and Neck like swallowing, breathing, speech, and any other problems that occur. She also set me up with the item below that is to help with my problem--

Also here is a link explaining the Bio-feedback that helps.

https://swallowingdisorderfoundation.com/swallowing-exercise-with-biofeedback/

And here is a video giving you an example of a speech therapist using one of the programs that are available for Bio-feedback in swallowing--

https://www.youtube.com/watch?v=_x6w2CLBUWk

Kid what you and I and many others are dealing with is what they call Late Effects. A late effect is a side effect that is caused by cancer treatment but happens months to years after cancer treatment has finished. For radiation the following examples--

Late Effects After Radiation for Head and Neck Cancer

Side effects from radiation treatment are directly related to the area of the body being treated. Any area in the treatment field has a risk of being damaged by radiation, causing side effects. The way radiation is given has changed over the years, leading to a lower risk of late effects.

Some of the possible long-term side effects of radiation to the head & neck include:

• Swallowing problems: Radiation can cause scar tissue in your throat or esophagus months to years after treatment. This can lead to swallowing problems. Report any changes in your swallowing to your provider. It may help to see a speech and swallowing specialist.
• Radiation fibrosis: This is the scarring of muscles that can make the muscles feel stiff or tough. These muscles can have spasms, stiffness, pain and/or become weak. Scarring of muscles in the neck can cause your head to be turned and tilted to the side or make it difficult to hold up your head. Physical therapy, cancer rehabilitation, supportive devices, and certain medications can help manage these problems.
• Nerve Issues: Nerves in the radiation area can be damaged or pinched by scar tissue, causing weakness or pain in the area.
• Lymphedema: Swelling of the face, chin, and neck area can happen. Notify your provider if you notice any swelling. Physical therapy can be used to treat and manage lymphedema.
• Trismus: This is an ongoing contraction of the muscle that opens and closes your mouth (TMJ). Trismus makes you unable to open your mouth normally. This can make it difficult to eat, speak, or perform dental care. Your oncology team can give you jaw exercises to prevent or help improve trismus. For some patients, jaw manipulation by a dentist or treatment by a cancer rehabilitation provider can be helpful.
• Changes in Saliva Production: You may have either dry mouth or thickened saliva. Dry mouth can lead to cavities. Using a saliva substitute, sipping on fluids, and sucking on sugar-free candy can help dry mouth. Thickened saliva can be managed by drinking fluids to thin your spit, using a cool or warm air humidifier, and warm showers. Some medications can be used to treat thickened saliva.

Here is a link to the full article of late side effects of cancer treatment-a very good coverage of this subject from OncoLink--

Survivorship: Late Effects After Radiation for Head and Neck Cancer

https://www.oncolink.org/support/survivorship/health-concerns-after-cancer-treatment-late-effects/survivorship-late-effects-after-radiation-for-head-and-neck-cancer

I hope some of this gives you some insight and help

Wishing You the Best

Take care, God Bless-Russ

The Cincinnati Kid

Couldn't ask for a more excellent response. Glad to see you're still around and very helpful.

Yeah, the speech therapist was the recommendation....i'd mislabeled it as physical therapy in the post.

In guess I was struggling with the fact that why do I need that when my swallowing works fine....its just the swollen bit that gets in the way of the food actually going down smoothly 100% of the time.

Anyhow....i'll give it a whirl unless Ear / nose / throat doc wants to do something else when I follow up with him shortly.

Thanks again.

wbcgaruss

Very good then Kid. You are correct you should be working with your ENT and Speech Therapist together as a team working to help you get better.

Wishing You the Best

Take Care God Bless-Russ

The Cincinnati Kid

Let me update on this a little:

So I've been to the therapist twice so far and she's enlightened me on various exercises to do that will help with the situation. I would say that so far, this isn't much help but I'll see it through and report back when I'm done.

My impression so far is that I'm being taught to adapt and live with the situation ( a seemingly permanent swollen area in the throat where food doesn't quite go down properly and its mildly irritating and mildly painful.)

Anyhow, I'm interested to know if anyone has explored any surgical resolutions for this ...or perhaps a treatment from a radiation side effects expert that I haven't even thought of. It seems a bit simplistic but why not just cut the swollen area out?

I'll be discussing options with ENT Doc in 4 weeks but I thought you good folks might have some insight.

wbcgaruss

It is possible as you say they are teaching you and adapting your swallowing to live with this. But I would say when it comes to speech therapists and this H&N stuff they are trying to eliminate the problem and help you solve it. The last time I went to a speech therapist was last year in September. This was after a week in the hospital of a teaching hospital. This speech therapist lady was from that hospital and they have a satellite patient facility closer to where I live. I had a swallowing test in the hospital and did not do so well on it. So they assigned a speech therapist to work with me. This hospital is known As one of the leading teaching and research hospitals in the country so the treatment processes are more in-depth and detailed is the best way I know how to put it. This speech therapist did things other speech therapists did not offer. More assessment of my situation, swallowing exercises, Biofeedback, which I never had before with swallowing, etc., and was treating me for mouth opening with the wooden tongue depressors which I hadn't mentioned but was glad for her covering the whole spectrum of my situation and gave me a device to use called EMST 150 as part of the whole process.

So what I am suggesting is maybe try another speech therapist at a bigger hospital or if you have a teaching hospital near you and see if they have any better therapy for you. Also, you said you went twice, this last time I went for 2 months twice a week for a 1-hour session. I believe it helped me a good bit and the biofeedback lets you know if you are putting enough into the exercises and helps you learn how to optimize them. It may or may not help but may be worth a try.

Also, keep in mind things can change over a long period of time so this may partially or completely resolve on its own. This H&N stuff is a slow process for recovery and other issues.

I also understand as you say it may not change and you will have to adapt to it and live with it the best way you can. I would say most of us who have gone through this treatment from my observation does not get off scot-free, it seems everybody goes away with something they have to live with such as swallowing issues, neuropathy, dry mouth, affected vocal cords, etc. Many times it is a small thing or two that is not really difficult to adapt to. Those who don't have some kind of after-effect are very Blessed not to have any issues.

Well, Kid, I am hoping you find a solution to this with your doctors, hopefully, something very easy that solves it. Hopefully, your ENT will have a solution and some good ideas. Are they having you get a CT scan before your next visit to show the latest way the area is that is giving you this problem and they can also compare it to previous scans? Or this could make a good base scan.

Wishing You the Best

Take Care, God Bless-Russ