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.

@srm

@hrhwilliam
Thanks for the honest response. Two years is a long time but at least it puts some perspective into my situation. Hopefully I won’t need to endure for two years (or longer) but at least this may help with becoming less discouraged over believing it should be different. I can just learn to grin and bear it when things are tough. And learn to enjoy the days when my pain is more manageable. I do realize at some point in the future I will need to own “my new normal”.
Going through the big C definitely gives a person a different perspective on life.

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I to had the P16 cancer in my right tonsil witch went into my tounge and upper pallet its been 10 weeks since my last radiation treatment I had 42 treatments no chemo or surgery I thought I was starting to do better eating some soft foods then it got worse, I'm back on my protein shakes and that even hurts I'm 61 I've lost close to 50 pounds and just had a new Pete scan ,doc said the lymph nodes look good how ever he cannot say I'm cancer free as it shows still active he claims this could be do to the inflammation I've also been dealing with a swollen neck that makes me look like a bullfrog ,possibly lymphonema if any one else has had this let me know, my energy levels are low I wish I could workout but my calorie intake is to low I just found this group and reading through the post really helps. I'll pray for everyone on here ,I'm a painting contractor its just me and my partner and I had to work through the treatments and only took two weeks off when my partner was sick I try not to work full days as I'm exhausted but I raise to grandkids and take care of my mom so I don't have a choice, the dry mouth is insane and my teeth are now hurting, but this to shall pass at least that's my hope . I will be checking these post to see if I can find some new answers to what helps .on another note I'm checking into stem cell regeneration of Saliva glands they have grants in San Francisco that are doing this

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@roblem

Not sure what kind of cancer you had but I had 35 rounds of radiation for a total of 70Gy and 3 rounds of cisplatin chemo for tonsil cancer back in 2008 and I did research then and found in an England Journal of Medicine that honey could help soothe the throat. I did shots of real honey and it took some of the edge off for me.

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@roblem I think you have a great suggestion here with honey. I might go a bit further and suggest Manuka honey as a stimulant for healing as well as soothing the throat. This honey is often quite thick so dilution with some warm water or tea would enable it to coat and soothe the throat. I wish I had thought to try this when I had mouth ulcers with radiation. And @noni777777 you seem to be well versed on the complementary therapies so might already be aware of the healing properties of Manuka honey. It is a soothing remedy for cough that equals or surpasses some cough suppressants in a recent study. The benefits likely outweigh the risks of the sugar consumed in this honey.

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@roblem

Not sure what kind of cancer you had but I had 35 rounds of radiation for a total of 70Gy and 3 rounds of cisplatin chemo for tonsil cancer back in 2008 and I did research then and found in an England Journal of Medicine that honey could help soothe the throat. I did shots of real honey and it took some of the edge off for me.

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Welcome, @roblem. As a long time survivor of tonsil cancer, I'm confident your experience would be appreciated by members talking about tonsil cancer here:
- Just Diagnosed with Tonsil Cancer - How to Treat?
https://connect.mayoclinic.org/discussion/just-diagnosed-tonisl-cancer-how-to-treat/
There are several discussions related to tonsil cancer in the group https://connect.mayoclinic.org/group/head-neck-cancer/?search=tonsil%20cancer&index=discussions

May I ask what stage your cancer was at time of diagnosis? Did you have surgery prior to radiation?

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@colleenyoung

Welcome, @roblem. As a long time survivor of tonsil cancer, I'm confident your experience would be appreciated by members talking about tonsil cancer here:
- Just Diagnosed with Tonsil Cancer - How to Treat?
https://connect.mayoclinic.org/discussion/just-diagnosed-tonisl-cancer-how-to-treat/
There are several discussions related to tonsil cancer in the group https://connect.mayoclinic.org/group/head-neck-cancer/?search=tonsil%20cancer&index=discussions

May I ask what stage your cancer was at time of diagnosis? Did you have surgery prior to radiation?

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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.

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