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.
James
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
Vinod
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.
Regards
James
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.

Hi I'm over 2 and a half years after radiotherapy after having the side of my tongue removed and a neck dissection and I found I started suffering with difficulties swallowing and the dryness was getting worse. I had to fight to get swallow tests done which happened recently and I have been given exercises to do and told just continue with the easy diet of sloppy foods, that I have reverted back to. I also have persistant oral thrush now too but been told I have had lots of meds for that and now to just start scraping my tongue to remove it. Been told radiotherapy can cause lots of issues with swallowing and the dryness can get worse even after 10 years......it isn't easy is it? We just plod on but we are still the lucky ones.  I was starting to worry that the thrush may have been something more sinister because it wasn't going but my dentist told me no my mouth looks healthy. Am thinking of booking more regular check ups with my dentist instead of every 6 months just for that little bit of reassurance.

Hi everybody,its a while since I have been on the Forum but I visit from time to time to see how old friends are faring. I,ve been following this blog with interest. My Husband,Brian is now 14years on from his Neck Dissection,&Chemo/Radiotherapy for Tonsil Cancer & has been experiencing difficulty in swallowing since the 10 year mark. We got a referral to the ENT department, & saw the Surgeon who originally treated him. He commented they were seeing more & more patients who were experiencing this problem after 10 years. he carried out a Nasendoscopy which was clear & referred him for a swallowing check. Soft foods were advised & I asked hime to recommend nutritional drink to our GP, which we now get on prescription ( Fortisip) for the times he just can't eat.  the explanation for Brians problem was that the back of his tongue had been burned by the RT so the mechanism of transiting food was impaired, & this would be a lifelong problem!    Radiation Fibrosis was not mentioned but,I'm seeing more & more written about it.  Best wishes to all

 

 

f

 

 

 

I looked at this site 10years ago when I had T2 N2b squamous cell carcinoma of the right tonsil .I just had to say I got and still do get fantastic treatment.I have had similar issues cramps ,swallowing ,rotting teeth,pursistant cough,all of which I have had advice and remedies.Some have worked some need evasive treatment.Everyone reacts differently,i was told not to look at sites like these cause it will make me more worried .Anyway I have some suggestions for teeth  ,use Colgate Duraphat 5000ppm a miracle,for dry mouth and sore throat use Xylimelts .Put one pill under tongue before going to sleep ,keeps mouth moist,itis great Sorry if I preached,it is long  journey and we need support.

After reading these posts, I become more thankful that my T2 N0 tongue cancer required no additional treatment.  There was chatter amongst my MSK team about doing RT,  largely because of the presence of a 9mm perineural invasion. The team was split on my prognosis.  Thankfully an IMPACT study of my tumor revealed that it wasn't overly aggressive, as tumors go, thereby alleviating the perineural invasion concern.  So all clear, no further treatment!

My neck and tongue surgery was tough, but only for about a week, and mostly the tongue.  Dr. Singh removed 54 lymph nodes from my left neck and a quarter of my tongue.   No post-op pain in the neck, tongue pain was gone after one week.

My heart goes out to all of you who underwent RT for mouth cancer.  The focus of this vile treatment is the face, taste buds, tongue, teeth, jaw, salivary glands and onward.  Some side effects resolve over time, some don't.  Healthy flesh is transformed into scar tissue, causing complications should the need for future surgery arise.  All for a marginal improvement in the probability of long-term survival along accompanied by an acute decline in the quality of life. 

Hi all, I have actually seen some improvement but mainly because I went to my local Head and Neck support group meeting and there was a speech therapist present who was talking to my cancer nurse. I explained the issues I was having with swallowing and the sensitivity to toothpastes and certain flavours etc and through this got seen by the speech therapist and had a videofluroscopy done which showed where radiotherapy had damaged the base of my tongue. From this I now have speech therapy every 2 weeks (my choice) to learn to do lots of exercises to strengthen and stretch my tongue. I have been doing all the exercises religiously and am noticing a difference. I also have to write up a food diary and try certain foods that aren't sloppy but now use these to help my hard swallow exercises. I will have to do the exercises for the rest of my life but they are giving me confidence back which is brilliant. I can now move my tongue around inside my mouth more ....still a work in progress though. I also use Xylimelts every night before I go to bed and in the morning I have more saliva which is great, I also use them an hour before I run too. Also using a toothpaste and mouthwash for dry mouth which I get on prescription. 

There are positive things you can do to help improve your quality of life, it's just asking the right people and sometimes pushing for that help. 

Unfortunately I do understand that after 5 years, the support isn't there, however it isn't the hospital's fault as they have to deal with the multitude of patients being diagnosed......

Wishing everyone well though. Best wishes, Karen

Add Reply

Post
×
×
×
×