Longer term questions - gums, voice, thyroid

Wednesday

Hi All!

First of all, am I crazy or did this forum used to be divided into different sections like "long term issues," "care givers," "eating," etc.? I was looking for those sections but can't find them, so if I have posted this in the wrong place, please let me know.

To the questions: I am 4 years out now from the end of treatments (yay!!) and have a few questions about the side effects I still have and what is likely in the future based on the experience of those of you who know about these things.

I'm totally used to the dry-mouth and can hardly remember not carrying water with me at all times. I use xylitol lozenges when needed during the day and XyliMelts at night. It only bothers me now because dryness can cause gum recession. Is this a given? Does everyone have receding gums or can I avoid it if I am careful with dental hygiene? If my gums do recede can I get a procedure to restore the gums or is that difficult for those of us with a history of radiation to our jaw area? Anyone with knowledge or experience with this?

I used to be able to sing but ever since the radiation, I have been unable. The speech & swallowing specialist said it is because the vocal cords thicken during radiation. She wasn't aware of it being reversible but has anyone else been able to get their old voice back at least well enough to carry a tune? Right now, my speaking voice is weaker than it used to be, especially early in the morning and late at night. It takes my voice a while to "warm up" everyday. If I haven't warmed up before receiving a phone call, the first people to call me each day often ask if I'm okay because I sound hoarse. My singing voice is dreadful. Higher notes won't come out at all. It's weird. I'll try to hit certain notes and literally no sound comes out. Similarly, when I try to talk in a high voice to my cat, if my voice is tired, it may not come out, or it may come out in a raspy whisper. Anyone know if this is reversible at all?

I've developed hypothyroidism. It is minor now. Is it likely to get worse or is it possible that it will stay like it is? I believe I read/heard that thyroid cancer is possible due to the beating it took during radiation? Is this common on the board here?

Is there anything I should keep an eye open for with regards to long-term side effects? Anything you wish you knew at my stage? If you are around my same stage, are you having similar residual effects?

Questions aside, I am very glad that I have made it to this point and have the luxury of being worried about my voice and under-active thyroid. I take nothing for granted and appreciate everything I have!!

Thank you to anyone willing to share their experience! :)

Logan51

Do not know the amount of Rads your larynx got zapped with, but that's soft tissue and has resulted in my now having a 20% normal air passage @ the larynx due to overall damage to the two folds and area behind. I got 68Gys to that area over 13 years ago, but started noticing a difference 6 or 7 years out.

The Rads also damaged my esophagus soft tissue- have been Feeding Tube- dependent since 8/2019.

That said, it doesn't happen to everybody, and I hope that will include you.

motorcycleguy

Well, I'm only 3 years out - all tests have been good, so far.

I did notice that my voice got deeper, but I'm a guy ... so I don't have a problem with that. I don't sing very often, but I was convinced to do some karaoke a few months ago, and people said I sounded good. (But, they may have been either tone deaf, or polite.....)

I always keep water handy, when eating - because I don't have saliva like I used to. So, things like meat will "hang up" in what feels like the bottom of my esophagus. (I also have a hiatal hernia, which means the espophagus has pulled loose from the ribcage or whatever, which I understand happens to about 1 in 6 people.)

Anyway, I will sip water slowly, and I can feel what ever is "stuck" in there, comes loose after a bit. It doesn't always happen - but seems pretty consistent with substances like meat.

Speaking of water, I was on a jobsite, where the local water often looked brown, like tea. So, I drank bottled water for over a year. Someone told me to drink high pH water for health - so I did. After returning home, my dentist said my teeth and gums looked healthier than he'd ever seen them. I think the two events were associated!

Overall, I consider myself very lucky, compared to most and I hope life is treating you well - regardless of these issues. Have a great week!

MG

wbcgaruss

Actually Wednesday, I don't think you are crazy, but I know I am. Certified and verified.

But anyway I do not ever remember this forum divided into the sections you are referring to just categories of types of cancer such as H&N, Bone cancer, lung cancer, etc.

Congratulations on being 4 years removed from cancer treatments.

As far as receding gums I believe I have them but I don't know if it is due to treatments or natural aging or both but so far has not caused me any major problems. Since you have had radiation around your H&N area and already have dry mouth you are going to have to be very proactive in dental care and I think if you do that you will restrict gum recession to the natural aging for the most part (Just my Opinion). If your gums do recede enough to cause a problem there is a solution called "Gum Tissue Graft" Here is a link explaining it from Healthline. https://www.healthline.com/health/dental-and-oral-health/gum-graft Or just do a search like I did using your statement "can I get a procedure to restore the gums" loads of info all over the place.

As far as vocal cords improving my opinion would be like your speech therapists that your vocal cords thicken and also I think there are many parts in the radiation field that are affected including your vocal cords radiation also is like a burning or drying effect on surrounding and internal tissue. That is partially the reason for some swallowing problems because the swallowing area or throat was in the radiation field pretty heavily. So think once the damage is there some of it stays. I am just thankful I can still talk.

I don't think there is a general condition where problems with the thyroid are guaranteed to happen. I had been taking thyroid medication prior to cancer treatment and after 3 cancers and two radiations it has bumped up a little twice but generally stays stable.

As far as the radiation treatment causing thyroid cancer I can't recall anyone on here having it, maybe 1 but it is pretty rare on this forum to the best of my knowledge, maybe someone else can weigh in on this that knows more.

As far as long-term effects the most you can do is deal with any problems as they come up such as swallowing or voice and one of the main things you can do is be very meticulous about your dental care.

I am glad we are where we are and just be thankful for all your blessings.

Wishing You the Best

Take Care God Bless-Russ