13 weeks post radiation and throat pain continues

Posted by srm @srm, Oct 3, 2021

It has now been 13 weeks since my final radiation (33 sessions) for my Squamous Cell Carcinoma throat cancer on the right side base of my tongue. Also had chemo with Cisplatin.
I had my feeding tube removed 12 weeks ago yet I am still on a liquid diet thus still losing weight. My issue is the severe pain in my throat. I still have several mouth ulcers that are not healing. The pain in my throat is constant but exasperated by any attempt to eat or drink.
As mentioned, I am still on liquids (protein shakes, boost and ensure). Most of the pain is on the left side of my throat in which it feels like there is a lump, sore, tumour??? Pain level varies daily (hourly). Either get burning pain while consuming liquids or sometimes it feels like swallowing razor blades.
Sometimes I can endure the pain while drinking my meals. Other times I need to numb my throat prior to drinking my protein shakes. Anything I have read indicates that these symptoms should last 4 to 6 weeks post radiation. My treatment team tell me that everything is normal. I truly sense they do not believe just how much pain I am in. I have a very high pain tolerance but there are many times I am literally in tears while drinking my meals.
Has anyone else experienced severe throat pain for long durations post radiation. If so, how long did it last and is there anything you have done to help heal the sores.
I am getting very frustrated and depressed. I don’t expect to be 100% pain free but feel I should not be experiencing this amount of pain and that I should be eating soft foods by now.

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egray67 | @egray67 | Jan 27 8:44am

Thank you for the responses; I can empathize with the struggles you are facing or have been through. While I struggle with my own issues I realize there are so many of us facing similar battles.
I’d like to get opinions on the post eating throat pain. I too am experiencing set backs whereas I was eating fairly well with some discomfort and then still resorting to only 1-2 tube feeds per day. Now fast forward a week and I’m experiencing awful pain after eating. Granted the food is not super soft (salisbury steak or similar) but I chew really well and swallow small amounts at a time with plenty of water. So currently I’m eating only small amounts and suffer with burning pain afterwards which last about two hours then soreness diminishes to minor pain. At this point this setback leads me to consuming 4cans of tube feed per day.
I’m left wondering, should I avoid eating altogether for a few days and concentrate only on tube feeds in order to get over this phase and give my throat time to heal. Am I making things worse or prolonging my recovery by trying to eat. Any thoughts?

I also have not returned to work, going on 4 months. Though I attempted twice and decided I was not ready due to progress not being linear. Partial return would complicate my TDI benefits. So I find myself with a lot of time on my hands and bored and down. My energy is mostly good, getting some exercise and walks in daily. I’ve painted two rooms, deep cleaned and de- cluttered the whole house.

William Olsen, Volunteer Mentor | @hrhwilliam | Jan 27 12:18pm

In reply to @egray67 "Thank you for the responses; I can empathize with the struggles you are facing or have..." + (show)

Pain is subjective. Is this just discomfort, eye watering, or bring you to your knees pain? If it's the latter, you had better bug your doctor. Those of us who were on feeding tubes for an extended period found it very difficult if not impossible to get back on the eating wagon, swallowing being the main issue. As for radiation damage causing a lot of discomfort, I for one found foods I could eat vs foods that gave me anguish to swallow. In time (many-many months) the pain subsided and the different foods became common.
There are still foods (and drinks) I cannot tolerate physically after twenty-two years. When pressed by well meaning friends, I simply say "since cancer I can no longer handle that". Usually that ends it.
I find that if you ask yourself if you are better today than yesterday or last week, then you are on the mend. If things are getting worse, seek help. It is a painfully slow process to heal after radiation. It's not just the cancer cells which were destroyed so it will take your body a long time to heal. Eat healthy what you can. Hopefully next month you can say you are doing a bit better.