What’s left after my cure for nasopharyngeal cancer

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.

hi 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!!

What kind of treatments did you have? I had scc of nasal mucosa. It ate part of my septum. I only had radiation and surgeries, but never had issues swallowing. It was all aimed at my nose

Exactly where I’m at. From what I read I’m a year into this again, and not feeling any better. Live your best life now? Really. Those days are gone. Just trying yo live day by day getting my life in order as best I can. Selling, giving things away. Visiting funeral home, lawyer. Trying to tie up loose ends. I live alone and I’m doing this all alone. It’s hard to live in the moment when sick in pain, and alone.

Dear ladydi

The drs. have said my husband has less than six months left to live. Therefore he is being treated by hospice nurses and doctors. Where we live the hospice care is very good.
If anyone out there has such a sad diagnosis, be sure to check out hospice care in your area. He is at home with me and nurses come twice a week to check on him. If I feel we need a nurse immediately for any reason, one will be sent to our home. If I feel I can no longer be his primary caregiver, I can ask for a nurse to come more often, even overnight. It is very comforting. If you need help let your doctor or nurse or social services know and they must be able to help you.

I tell my family my cancer was replaced by lifelong radiation side effects.

I have been living with late side effects since summer 2020. I had my HNC treatment - with radiation and chemo in 2006. I understand that it's very unlikely for the late side effects of radiation to get better - am just doing best to live one day at a time.
Doing my best to be 'ok' adapting and having my own company most times - because I find it tough to have people understand or aware that I have swallowing issues, and not comfortable eating in public. To add on - a speech issue - where others have problems trying to hear or comprehend what I am trying to say. To add - a hearing issue!!
At times - I really wish for visible disabilities - and not invisible disabilities !!
And hear you ... it's a lifelong radiation side effects !!

Unfortunately this is the grim reality that nobody understands unless they have been in our shoes. I carry scissors and straws with me everywhere I go. My mom is elderly and forgetful and even she questions why I cut my food into tiny pieces when we eat. I just plow through and remember that although the after effects are here so am I! Always look to the positive. 🙏🏼

Hear you .. it is sad that others perceived us as 'normal' - not knowing and/or understanding our invisible disabilities - hearing loss, difficulty in swallowing, speech slurring --- all these makes it difficult in mixing and mingling with friends, families, and social groups. In fact, since diagnosed with these late effects in mid-2020 - my lifestyle has taken on a complete U-Turn.
Even going to the store to look for an item - it's frustrating to ask for help, and it's just as frustrating for the service rep to assist when my speech is slurry and hard for her/her to fully get what I am looking for - and this is one of the many challenges of the late side effects of HNC treatment!
Am trying to adapt and take one day at a time - and just have to wait and see how it goes onwards!