Nasopharyngeal Cancer

Posted by kat63016 @kat63016, Jan 18 9:29pm

My husband had nasopharyngeal SCC. It’s been 40 years since 7700 rads of cobalt. The medical facility told us he was one of two people in The US back then that had it. My concern now is that he been having food swallowing problem since the. Treatments. He had a stricture about 8 years ago where they did the balloon enlargement in his throat. Just in the last few weeks he has went from struggling to eat, which was normal for him, to only liquids. I’m scared. I’m terrified he has esophageal cancer. Can anyone tell me about their swallowing issues far out in Time from Radiation. I know it’s been posted many times that swallowing is difficult. Did anyone else have problems like this where it WASNT cancer so many years past treatment?

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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.

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@ltecato

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.

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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.

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@kat63016

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.

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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.

REPLY
@ltecato

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.

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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.

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