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What’s left after my cure for nasopharyngeal cancer
I was “cured” from my stage 4 non-small cell Nasopharyngeal carcinoma after 8 months of living hell treatments in 2012. After the forth dose of radiation it was really difficult to swallow and all the other happy side effects. Fast forward to 2021, I was losing my voice, my speech was very raspy and was hard to catch my breath. It was hard to swallow almost any foods but soup and hot cereals, always involving a lot of choking. Had to have all my teeth removed because even with proper care they were rotting from the roots down (and most were capped and crowned already….gotta love cavities at every visit) so, after 30 dives in a hyperbaric tube they were surgically removed, leaving a hole in my upper gum line leading to my right nasal passage (yay!) so that needed surgically repaired. While all this happy fun was happening I was losing weight, lots of it. I had lost 50# while going through cancer treatment and never was able to put it back on so losing more was bad. I knew something was going horribly wrong because at work I was always easily exhausted, couldn’t stay hydrated because I’d always choke like hell drinking it. One day I was walking to my truck in the morning before work and I collapsed in the parking lot. I knew I had to get looked at. Found out I had been working with walking pneumonia for the last few weeks and I had to go on disability from work. After the pneumonia was taken care of, had a peg tube reinserted so I could get some nutrition and had a speech therapist look at my throat scan and my epiglottis is non functional and my vocal cords are fried enough that they don’t relax enough for proper breathing or speaking. Had throat dilation done, it lasted a whopping 5 minutes….when I asked the ENT specialist at the follow up appointment if there was something he could do he said “live your best life”.
Sorry for the long drawn out story, I’m just looking for some kind of hope to stop this decline I’m on. I’ve had walking pneumonia four times now, have called every top tier hospital in the U.S. looking for help and I get the same “sorry” every time.
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Hi Lilyann
I was diagnosed with T4 N1 nasopharyngeal cancer in 2006, and have to say I had a great medical team at PMCC in Toronto. After treatment, and with feeding tube removed - I thought I was 'ok' and after 15 years of follow up with my oncologist, I was officially discharged - in that I no longer require follow-up. But, in summer of 2020 I started not being able to speak in that my words were slurred. I panicked and not know who to turn to - eventually I seek out my my oncologist - after several tests and visits with various depts in PMCC I was then diagnosed with dysarthria and dysphagia and severe neck fibrosis - late effects of radiation -- after almost 15 years !!!
This is an added medical issue for me (a big one !!) - i.e. besides severe hearing loss, food swallowing, teeth & gum issues, taste issues, etc, etc.
I have come to the conclusion that I have to accept and adapt my lifestyle to my current situation - a complete U Turn to what I was prior to my speech issues. To keep my speech issues from getting worse to the point where I am just not able to form a single world - I do dysphagia exercises daily - not sure if this helps .... but .....!!
I hear you .. and all the best in this difficult journey.
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1 Reactionhi josk, lilyann here. my goodness, thank you for telling us about your journey. i am so glad that you took the time to tell us as its hard because of all you went through. thing is; no one tells you this when you start your journey. you find out things down the road. you are going through a lot more than me and the time span is something else (really lack of words) you have put everything in perspective so well. i agree with the panic, when i was told i have to do this and that and then we will start this and that and next thing you know my brain couldn't handle it and i am not too sure i was close to a breakdown. so it sounds again like you are a lot stronger than me. i sure hate it for you and that comes from the heart. i do have the hearing loss, trouble swallowing and liquids are the worst. neck and ear pain, goes up the back of my head. have to lay down. yes, we come to a point of "acceptance" it is our new normal. so now i got something "new" that happened to me today.........i have a 4 unit bridge .......front teeth........thank god for masks. they fell out..........oh boy, omg! so of course we lucked out and a dentist seen me and put it back in.......however......i have to be very careful as 2 of the 3 teeth holding the bridge are broke. do you know my husband told him about my cancer and do you know he wanted to know more and he even felt how my lymph nodes were getting larger because he wanted to know why i had to have radiation. he also said too.....about the 3 teeth pulled on the bottom of my mouth. said i need more time in healing because of some Cartledge growing out of one of the pulled teeth. when i told him they wanted to radiate one week after dental surgery. he said that would have been too early and that was sept. 11, 2024. they wanted to radiate me on the 18th. pet scan was on the 17th. so mentally, it was just too much for me. i do some of the dysphagia exercises, i never did get to go to speech therapy. at the time i thought "why" i have no voice. silly me. anyway. i thank you for the best wishes and so glad to hear from you. it helps me a lot to be able to correspond with someone. its always good to tell your story and hear others as we are not a lone that is for sure. so you will be in my prayers and i hope you have met some compassionate people along the way as i have. no one really understands how hard it is not to be able to talk. its hard to explain things. sorry to be this long but, what a day. take care.
Hi Lilyann
When it comes to teeth/oral - my oncologist works with the dental team in the same hospital to do whatever needs done prior to the start of treatment. And, after treatment when I required dental implant to the front upper teeth - my dentist had connected with my oncologist if it is safe to have the dental implant. (I remember my oncologist saying 'no' it's not safe, but my dentist argued that since it's the front upper teeth - that should not be a problem - and I told them both to sort it out and will go with whoever). Bottom line - dentist and dental implant! Perhaps you can have your dentist and your oncologist work out something that might work best for you?
Hear you on the difficulty of swallowing .. water/ liquid !! Hard to have people understand why it is so difficult to swallow water and/or liquid - to them, it is a simple task! I kinda gave up with explanations. I find that tilting my head backwards a little bit helps.
Do take care - and all the best!!