Late side effects from Cobalt Radiation for Nasopharyngeal Cancer

That sounds a lot like my experience. I had squamous cell ca of the nasopharynx when I was a teenager in the mid-1970s. I got a about 6,000 rads of cobalt. It took about 30 years for the dysphagia to get bad enough for the balloon in the esophagus procedure. I have had it done twice but I have been told that it will not do any good from now on.

I was given a feeding tube and used it for about a year before I got tired of it falling out or getting infected. If the “experts” tell your husband he needs one, he should do his homework before consenting. He could be at risk of aspiration pneumonia. They might not tell him that the feeding tube will cause him to “forget” how to chew and swallow food. That’s one nasty surprise that I experienced and I will never forgive those who failed to inform me.
You can relearn but you will bite your tongue a lot in the process.

I just can’t eat “normal” food now. I survive okay on Boost and “full liquid” or “soft mechanical” food. My weight is fairly healthy but it fluctuates a bit. I have decided that I don’t want to eat when anyone but my wife is around because I don’t want other people to see me struggling to get the food down. So that rules out most restaurants and dinners with family. I just have to accept that but because of the pandemic we don’t get out much anyway.

But anyway, try not to worry about esophageal cancer. I think that dysphagia is unfortunately typical for long-term survivors who have been radiated for head-and-neck cancer. The other big problems are trismus and xerostomia.

Thanks for the reply. Have you had any problems with a tired tongue or tired mouth. I suspect my husband has tmj problems to boot maybe to do with the trismus. My husband was 20 when he got the cancer. Did they ever rule out what yours was caused by? Truly appreciate your feedback.

Yes, sometimes my mouth and tongue feel tired. I also have started to develop speech impediments. I sound like Daffy Duck or Sylvester the Cat sometimes. The dry mouth causes a lot of that. That’s why I dread going back to the hospital, because they will put “NPO” on my chart and I won’t be allowed even ice chips to hydrate my mouth. Then the mucus gets out of control and they expect me to get rid of it using those ridiculous little sponges on sticks. I hate those things.

I have no idea why I ended up with nasopharyngeal cancer. I am not a member of any of the demographic groups that are considered at risk and I was just halfway through high school when I got diagnosed. The doctors first thought I had Hodgkins. My best guess is that I spent too much time in cars with adults who were smoking when I was a kid.

If it was being in a car with smoking parents, I would have had it.
My husband had welded in toxic material about a year before, in the coast guard but they aren’t sure where it came from either. He was not in any of the demographic groups either. He was a light smoker however. My husbands was stage 4 when they finally diagnosed it correctly because who would have a NSCC at 21 or like you in Your teens. What a horrible disease to have to face at such a young age and also the rest of your life. My husband also has speech impediments because he trips over his tongue. I’m so sorry you have to experience all this.

Hi @kat63016, you've connected with just the right member @ltecato. I think you might both be interested in this related discussion @debdoc101 started about Cobalt radiation:
- Cobalt radiation induced thyroid cancer & other health issues https://connect.mayoclinic.org/discussion/cobalt-radiation-induced-thyroid-cancer/

The doctors first diagnosed me with Hodgkins and I can’t blame them because I think I “presented” like a typical Hodgkins or lymphoma/leukemia patient. I almost had to have a laparotomy and splenectomy to stage it but a pathologist who was visiting from MD Anderson told the Air Force doctors that my histo slides didn’t look right.

I had to have two bone marrow biopsies. They were totally unnecessary and the procedure is torture. I knew kids with leukemia who would refuse treatment as soon as they turned legal age and I always suspected that the bone marrow extractions were a big part of the reason. I doubt that it has gotten any better since I was a teenager.

Hi!… I have a somewhat similar experience though I was diagnosed with a different type Cancer… SCC, Squamous Cell Carcinoma found in the lower frontal jaw… radical surgery was required and a transplant to replace the 2/3s of the jaw removed… long story short, eating swallowing and speaking had to be relearned from scratch… not easy when one is ‘up there in age’… I have managed somehow, but the problems with the mucus/phlegm is the worst, it makes it difficult to swallow or talk… I too did not particularly liked the ‘sponges with the sticks’ but if you want to keep your mouth and what’s left of your teeth, it’s a must… my opinion of course…. without good oral hygiene lots of other unnecessary and unpleasant problems will show up… it’s tedious work for sure… first thing in the morning and last thing at night helps… during the day just rinsing is very helpful too… again, tedious work…. And since chewing or swallowing any food is impossible, a totally ‘liquid diet’ becomes a new normal unfortunately but necessary… I like many of you was not even close to any demographic for the Cancer… though in my generation smoking was ‘the thing’ almost everyone happily did … but I never smoked… however I was around those that did… in restaurants and any gathering, it couldn’t be helped…. They say drinking also , again, no real drinking besides beer … so who knows really?… my instincts tell me that in my case, it was the exposure to Agent Orange, since I served in Vietnam 3 back to back tours… but 50+ yrs later?… it just seems it’s all just ‘educated’ guessing…. As for the mucus, maybe a portable hand held pump might help?… I am seriously considering it because it’s awfully bothersome now… speaking has become more of a problem too… hope this little input helps someone out there….Stay strong and keep moving forward no matter what….giving up in not a good choice…

Just FYI. I had cobalt radiation to my neck at age 4 for recurrent tonsillitis. At age 9, I developed Thyroid Cancer. I had a radical neck surgery at age 9 and had no further problem with the cancer, but at age 60, I began having the Cobalt decay and radiation fibrosis symptoms that Cobalt is known for.
If you have access to an academic Late Effects Clinic, would suggest getting an appointment. I have been so thankful for the Late Effects Clinic and the docs that help you understand and give you an idea of what to expect.

“I had cobalt radiation to my neck at age 4 for recurrent tonsillitis.”

I thought I was getting it bad with all the penicillin shots they gave me for strep throat in public school in Wyoming. There was some kind of government program in the 1960s that involved weekly throat swabs at school. I ended up getting injected practically every month. I don’t know if it’s still being done.