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.

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Colleen Young, Connect Director | @colleenyoung | Mar 22 1:14pm

In reply to @cancergotme2 "I’m still doing radiation and to read this just crushed me!" + (show)

@cancergotme2, how are radiation treatments going? How are you doing?

scott519 | @scott519 | Mar 19 2:02pm

I'm experiencing that also mines from saliva glands fried throat is always dry and feels like cracks when i swallow also certain times when I breath through my nose feels like a flap in the throat is being pulled up and cuts off my air supply causing me to have to open my mouth to get oxygen temporarily scary sometimes and annoying

davehutsell | @davehutsell | Mar 11 10:32am

I went through the same frustration a couple of years ago. I told my radiologist they specialized in permanent strep throat. It was a good 6 month before i could eat much of anything solid. Soups, Boost, Yogurt, then peanut butter.
It will get better, take each day as they come and do the best you can. I lost a lot of weight which is good but the throat cancer method is not a good weight loss method. To this day there are certain foods that get stuck in my throat. French fries of all things!
Let us know how your doing as you go.. Others are encouraged by our stories.

William Olsen, Volunteer Mentor | @hrhwilliam | Mar 10 9:18am

In reply to @cancergotme2 "I’m still doing radiation and to read this just crushed me!" + (show)

Hello @cancergotme2 Welcome to the Head and Neck group although one would think you would rather be anywhere else but here.
With the treatments we all go through, rarely are two patients alike in course, response, overall health and so forth. However, throat pain is pretty common from the treatments, the experience certainly varies patient to patient. There are ways to help with this.
This is a very difficult fight you have found yourself in. It is likely the most difficult battle of your life. It is not however impossible, just difficult and for some, very difficult. It is normal-life halting. It is social-calendar cancelling. It can be financially altering and so forth. Surrender is not an option. As Churchill said, "If you're going through hell, keep going."
I and most everyone who follows this H&N feed have been down your road as a patient, going through this rough time, and coming out the other side to enjoy life. I can answer many of your questions. I can listen to your complaints. You can read many of the discussions over the past years here. While you might wish to comment or question on some of the older posts remember, many patients have healed and moved on, wishing not to remember this experience and therefore likely will not respond in kind. It is very understandable. Others like myself offer up our experience as perhaps a thought that we can help someone like you through the coming weeks, months, and yes sometimes years. Perhaps someday you might wish to do the same.
Please don't hesitate to ask, either by a comment on a discussion or better yet, start your own discussion with a question or three where we will see who can help you out a bit on this journey. In the meantime, Great-uncle Winston also was known for one word, "Courage!"

cancergotme2 | @cancergotme2 | Mar 9 8:23pm

In reply to @hrhwilliam "If I suggest to you my throat pain did not subside for almost two years, would..." + (show)

@hrhwilliam

If I suggest to you my throat pain did not subside for almost two years, would that help you to understand the battle in which you are still engaged? And if I could add, especially this time of year, there is nothing written in stone which says you cannot have a cold, strep, or sore throat just because you have had cancer. The healing takes time, lots of time. The pain is normal and so very annoying. The days seem endless. Life at times seems dreadful. The plans you make are disappointments. Eating is a constant challenge.
The chemo probably, in my opinion, slowed your ability to heal. Take what nourishment you can, ice cream if it works. How about lemon drops, custard, soup?
This pain will go away. But it may take many months. You are drafted into the cancer recovery army and there isn't much you can do about it until your time served is done.
Two months after 9-11 I ended up having my cancer lump removed and my battle begun. I too was drafted. Two years later I began to feel normal, or what my new normal was to be. The twenty years since then I wouldn't trade for all the world's gold and horses. But I will say that every little issue you will face will make you think that the big C has returned. Fact is you can just get sick like everybody else and that maybe all it is. And it should be noted it wasn't always easy street. The damage done has been a constant battle since day one, much like a wounded vet who learns to function and enjoy life as it is. In fact just 14 months ago I had a surgery to repair cancer damage to my jaw from radiation. But as fun as that was, life goes on. I am doing just fine.
Hang in there. Two steps forward and one step back as we say is still progress. This whole experience will change you and as a general consensus, change you for the better. We cannot hug you and make the pain go away. We cannot carry you to life before cancer. All we can do is encourage you, listen to you, and pray for you.

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I’m still doing radiation and to read this just crushed me!

jonesja | @jonesja | Mar 4 8:32am

In reply to @russellreed "I to had the P16 cancer in my right tonsil witch went into my tounge and..." + (show)

I would say it took me about 4-6 months after radiation before my eating and drinking was somewhat normal. Soft foods, etc. Throat pain gradually decreased but it was 2 steps forward and 1 step back. There is a generic dry mouthwash at Walgreens/ CVS that really helped me with dry mouth resulting from low Salvia production. Hang in there it will slowly get better. Today I am 18 months out of radiation and back to about 90% normal with taste, Salvia, eating about anything, energy, etc. God Speed

William Olsen, Volunteer Mentor | @hrhwilliam | Mar 4 8:00am

In reply to @roblem "Sure, in 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and..." + (show)

When it rains it pours! Sorry to hear of this latest development. At least you are in good hands. Froedtert did my initial surgery back in 2001 and I always believed they did an excellent job under difficult circumstances.
Good healing with this upcoming surgery and post treatment. Please keep me posted, PM if you wish. I’d tell you to have courage but you are already a lion.

mrekau | @mrekau | Mar 4 12:48am

Well in now 63 turning, 64 in April. I was diagnosed in April of 2015 so I’ll be 10 years out. Diagnosed at stage 4 B,I had molars pulled first then had tonsil surgery the doctor had to scoop out the back of my throat to get good margins. Did 35 radiation treatments and 6 chemotherapy treatments. It was hell on me I went from 235 lbs down to 150. Finally able to eat after 8 week after treatment stop and had the feeding tube removed end of September of 2015 told I was cancer free 9-11-2015. No saliva production for 7 years cavities at the unlike had bad receding gums had all test pulled had to do 30 hyperbaric treatments before having them removed and 10 after having them remover. Thyroid is shot and now on 2 different thyroid medications to get it back in balance. I’ve had pneumonia twice. 1st time was Christmas of 2022 and second time was November of 2024 I aspirate food and liquid every meal I’ve learned to cough it out of my lungs but it’s hard to clear it sometimes, I know the feeding tube is right around the corner. I’ve had a different look on life and love since I had the “C”. Taste buds kicked in about 2 months after the treatment stoped. Sense of smell was on over load sense treatment and still as good as ever. Lost all the grey hair (only) from the chemotherapy and it came back with vengeance. But I still have a dark streak of 1” of hair across the back of my neck at the top where the radiation burnt my neck. I get scoped every 6 months and yearly chest and head cat scans along with colonoscopy and endoscopy at the same time. It’s been hard on me but I think every day is a blessing and a gift from God if you ever need anything your welcome to react to my post it takes a while to feel better but after a year from treatment I felt like a 35 year old trapped in a 56 year old body and that stayed that way until I got the Covid shot in 2020. May God be with you as you recover. Mike

mrekau | @mrekau | Mar 4 12:11am

In reply to @colleenyoung "Welcome, @roblem. As a long time survivor of tonsil cancer, I'm confident your experience would be..." + (show)

Diagnosed at stage 4B in April of 2015

roblem | @roblem | Mar 30, 2024

In reply to @colleenyoung "Welcome, @roblem. As a long time survivor of tonsil cancer, I'm confident your experience would be..." + (show)

Sure, in 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my lymph nodes was over 7cm and that is not a typo. I had no surgery whatsoever as I got a second opinion from Froedtert & Medical College of Wisconsin Cancer Center who said I wouldn't need it and were extremely confident I wouldn't need a feeding tube either and they were correct. In addition, cancer free in March of 2009.

Unfortunately, just diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and am finishing my research and second opinions. I have left partial glossectomy with a radical forearm free flap surgery scheduled for April 3. Also, includes a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer as it is literally adjacent to my left tonsil.

One thing I am finding out is this big de-escalation cancer treatments coming about especially for people who got it as a result of HPV. I just talked to my oncologist a few days ago and he said I would have four different options if I had tonsil cancer today.

Once I have more time as I have a big decision coming up in a few days, I will definitely try to help where needed. I can tell them what to expect over the years and when as there were plenty of side effects from the 70Gy of radiation I had.