10 years on and problems

Hi everybody. Sorry I haven't been on lately, but anyone who's interested could probably trawl up my back story.
I'm searching for anyone who has developed swallowing problems several years after getting the all clear. Mine started a couple of years ago and a panendoscopy/dilatation operation seemed to work only for the same problems to return last year. Since then I have undergone 2 more similar operations neither of which worked.
The ENT guy's take on it is that the radical RT has caused the throat muscles to become woody and unresponsive. The last op included Botox injections!
I don't have a lot of confidence in the people I'm seeing at the moment so if anyone else has experienced the same, please let me know.
That said, just being here 10 years on is a miracle and I hope will give some encouragement to those just starting out. My love and best wishes to them and to everyone else.
Original Post
Sorry you're having some problems Paul - I have come across one or two others with similar problems - sad to say their nutrition is mostly/all of a liquid nature.

I agree - post cancer care (after RT etc) - especially a few years or more down the line - can be piss poor. No real help is/can be given.
It appears we have to live with it.

I now suffer from some terribly painful spasms/cramps in my muscles under my jaw. (RT related). I get NO HELP whatsoever.
Current state of the NHS - shit!

tony k
Not only is aftercare piss poor it is non existent
Once they get you past the 5 year mark they wash their hands and put you down as a good clinical result. Job done. They can say that they have cured cancer but will not help at all with the after effects of the diabolical "so called"treatment.
It seems that the aftercare from the 5 year clear point is a big concern. I have now been discharged for 3 years now, and not word from my consultant. I have spasms in my jaw, which, I thought was just cramp. My main concern now is the dental decay, which is causing lots of pain.
Hi there Ashington1.
Take care chap - get your dentist to refer you double quick to maxillofacial at the hospital.
I have lots of spasms and cramps in my jaw now in areas which had lots of RT . The GP surgery don't give a flying f@@k!

Get yourself prescriptions of high fluoride mouthwashes and especially toothpaste if you can.
I had 2 wisdom teeth out last year at maxillo (they did mouth biopsies too) They were brilliant with me as I was suffering so much high anxiety (still do).
nearly 13 years on for me now - My motto is - be pro active! no one else (NHS etc (apart from maxillo facial) is bothered.

good luck - tony k
Hi again. Thanks for your replies. On one hand it's good to know there's still some of us about, on the other it's sad to find out that this lack of care is so widespread.
GPs simply don't have the knowledge. ENT will make a couple of stabs at helping then give up on you.
Surely, somewhere in this country there are professionals specialising in the long term effects of cancer treatment.
Perhaps Dr. Joshi could help us on that one.
Hello James

All maxillofacial units in the NHS that undertake Head & Neck cancer surgery should by now have a restorative dentist or consultant with special interest in oral care of the H&N cancer patient attached to them. Please enquire and ask for an appointment for help with your problems.

Best wishes
Thank you Doctor, I'll do as you suggest.
For general information, Macmillan have sent me a very interesting booklet 'Managing the late effects of Head and Neck cancer treatment'. A lot of good stuff in there. They will send you one if you ask.
Hi All,
Thanks for all of your advice and past knowledge. I have now seen a dental consultant, and they have now decided to remove my problem teeth. They are still concerned about me getting an infection in my lower jaw, and have advised on antibiotics prior to the teeth removal. I do get high flotide toothhpaste, which I use, but the mouthwash I cannot use as this causes pain.
Hi Ashington
One of my wisdom teeth removal was stitched afterwards - it healed quickly. The other one came out far more easily - this wasn't stitched - and this was the one to take many months to heal. All is ok now tho fortunately

I was told it was just chance/one of those things
- I'd try to get some stitches in if I was you (inmho).
You will also be told to have plenty of salt water mouthwashes.

goood luck - let us know how it goes

- regards tony k
I am 10 years post treatment. I had a re occurrence 1 year after treatment so I have had 12 weeks total radiation & Chemo therapy plus brachytherapy. The radiation is what helped me to be cancer free, but is also what did the most damage. When I reached 8 years post treatment for Stage 3 (large tumor), I experienced a change in my speech and it continued to get worse along with swallowing. I also have the tongue spasms everyone is referring to. I had one of the best Oral Surgeons who diagnosed me with Radiation fibrosis and after educating myself about it, it all made sense to me. Before the diagnosis, I was at my wit's end wondering why all of the changes now, 8 years later? Radiation Fibrosis is progressive, and often shows up later. Over the last two years, I have had a decline in my speech articulation & pronunciation. My tongue is stiff and almost immobile. I cannot touch my tongue to the roof of my mouth anymore due to the atrophy and nerve damage (radiation fibrosis). People cannot understand me on the phone and when the tongue spasms hit, any little bit of understandable speech is gone. While it is frustrating, I feel comforted to have a diagnosis for this and understand why this is happening: Radiation Fibrosis.

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