Getting frustrated with throat pain post radiation

Posted by srm @srm, Nov 26, 2021

Now 5 months post radiation. 33 treatments of targeted radiation plus chemo therapy for my stage 3 Metastatic Squamish Cell Carcinoma back of tongue R/S. A few weeks ago my throat pain was subsiding enough whereas I finally started eating soft foods with some good success. This week the pain increased to where I have had to go back on liquids. The pain is either on the left side, right side or back of throat. Sometimes the entire throat hurts like strep. The pain is always present but is really bad when I swallow something. Seems to be 2 steps forward and a few back. My oncologist claims that the pain will eventually go away but cannot provide any kind of time frame. Has anyone with similar treatment experienced throat pain for an extended period post radiation? If so, how long did it last? I was getting really excited and optimistic for a couple of weeks while eating very saucy soft foods. I was finally making progress and then things just got worse again. Nobody said this was going to be easy but it gets discouraging when I appear to be making progress just to fall back again.

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

Colleen Young, Connect Director | @colleenyoung | Jan 12 4:21pm

In reply to @chris0126 "Not sure about you, but I can sample a lot of ice cream in two years...lol" + (show)

Hi @chris0126, welcome. You're not alone in the ice cream department. @alpaca tells of her love of ice cream here:

- Who Can Resist Ice Cream With Chocolate on Top: Meet @alpaca
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/who-can-resist-ice-cream-with-chocolate-on-top-meet-alpaca/

@mytwocents, how are you doing? Did you talk to your cancer team about the return of the pain?

mytwocents | @mytwocents | Jan 12 5:21pm

How am I doing? No change. My throat/tongue/swallowing hurt some all the time and quite a bit worse when eating especially in the morning. I'm back to acetaminophen and ibuprofen before meals. Talk to the cancer team? Sorta. Their answer was to go see an Ear, Nose and Throat specialist, which means shove a scope down my throat and see nothing. Let's say I'm less than enthusiastic about my medical care right now. My conclusion is the pain is a side effect of the radiation and it could last for weeks, months or years as others have mentioned. Thanks for asking, but I'll just deal with it.

chris0126 | @chris0126 | Jan 14 1:14pm

I understand frustration...I do. With any luck it will be short term and not last too long.
I love how they just say go here, and go there! Its not their wallet, or their body being probed over and over and then have them say....Hmmm, I dunno. Maybe try this guy instead. Nope!

davehutsell | @davehutsell | Jan 15 8:26am

I had similar damage from radiation. My treatments completed May 5th, 2023. At my 1st follow-up appt in Aug, I told my radiologist that they gave me perpetual strep. throat. I had 35 doses over a 7-week period.
I was told to give it time. By Nov. 2023 I was better. Pain not so bad but still had a hard time swallowing and food did not taste like much. It is mid Jan. and swallowing is still difficult compared to my old normal, but pain is gone.
I am at 7 months, cancer free so far, 43lbs lighter, don't like to eat as much as I used to. I can live with this.
I am told I can expect more improvement over time. 1 -2 years? I will keep updating. Hope i can keep the weight off. All this said from the days of struggling to get 8oz of boost down (took me oxy and an hour) to now, I have improved immensly and I hope you have similar results.

mytwocents | @mytwocents | Feb 14 10:51am

In reply to @mytwocents "I just discovered these postings and appreciate the information that my pain post radiation is probably..." + (show)

Update: For others who are experiencing post radiation pain, the hard pain has FINALLY subsided for me now 6 months post radiation. For 6 weeks (4 to 6 months post radiation +/-) I was back on the pain pills, yet now it's just discomfort and the other side effects. Good luck to all of you.

William Olsen, Volunteer Mentor | @hrhwilliam | Feb 14 2:49pm

In reply to @mytwocents "Update: For others who are experiencing post radiation pain, the hard pain has FINALLY subsided for..." + (show)

That is good news to hear. This healing after radiation takes years actually. Does it still hurt if you cough or sneeze? I also had neck cramps if I yawned but after about six years that too went away. Have you experienced cramps?

imaginus | @imaginus | Feb 15 7:50am

In reply to @davehutsell "I had similar damage from radiation. My treatments completed May 5th, 2023. At my 1st follow-up..." + (show)

Good to hear you're progressing. It's been a year and a half since I finished my chemo/radiation on throat. Let me tell you...the after affects can be brutal and far reaching. The things they DON'T tell you about. Radiation has the potential of damage beyond what I had envisioned.
Good luck...and hang in there.

mytwocents | @mytwocents | Feb 15 8:51pm

In reply to @hrhwilliam "That is good news to hear. This healing after radiation takes years actually. Does it still..." + (show)

Just a quick reply to William, my pain was a constant throat and tongue pain that increased with swallowing. No cramps, but swallowing isn't natural, my tongue is screwed up so I don't enunciate my words as well as I used to, etc. But I'm looking down on the grass instead of up at it. Good luck to everyone who goes through this.

egray67 | @egray67 | Feb 16 9:27am

In reply to @imaginus "Good to hear you're progressing. It's been a year and a half since I finished my..." + (show)

In reply to Dave Hutsel
Thanks for your info and post. I am sitting at 3 months post radiation and am dealing with what is described, throat pain… burning when trying to eat. This is despite eating soft foods. There are days I get by with only one tube feeding other days up to four.
It is encouraging to hear that you are pain free after 6 months and hopefully this will be my case.
I have a follow up today for scoping of throat as next step to determine throat pain. I’m dreading the procedure and have little hope they can do anything for me. I just need to be patient. Sigh…

fordham | @fordham | Feb 17 9:17am

In reply to @imaginus "Good to hear you're progressing. It's been a year and a half since I finished my..." + (show)

Been year and a half since I’ve been done also lots of ups and downs like people say 1 step forward 2 back each month would get a little better I kept telling myself I’ll be better next month. Still suffering from some pain and dry mouth hope in time it gets better,taste is getting better but still can’t eat a lot of things I use to eat nothing seems to taste the same,what’s really bad is I’ve been a picky eater my whole life and I’m 71 hope this helps as it’s a long road as everyone says but it’s still better than the alternative