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Sorry Rosie, I have only survived two years and to date have only lost one tooth - one of the two surviving complete molars I had left. All other molars were crowned in 2011. I'm keeping fingers crossed that the crowns might be saving some problems. Although when they give you a general anaesthetic they ask whether you have any crowns. Then they manage to chip an incisor because they can't get your mouth open wide enough.

Life's a bitch - then it has puppies.
Hagg,why do they feel you unsuitable,im going next week about mine,it's been a year since I saw restorative dentist who suggested them but my previous consultant who I still see annually in the Midlands says he thinks they are a bad idea and always fail on lower jaw after RT.then the risk of ORN.its never straight forward for us is it.If we knew then what we know now about teeth and RT.xx
Hi Hagg,know what you are saying about enough mouth trauma,I know my teeth will not last much longer and they made me partial dentures before and they did not fit properly .i have a lump of bone where they cut through my jaw and the dentures can't fit properly and I could,nt wear dentures are not going to work.have you had any teeth out since RT.did you have to have dives in chamber first.valerie
Yeah I cant have dentures for much the same reason as you Valerie. My upper front crowns and bridge are gradually failing so when they go I guess I'm screwed.
I had a wisdom tooth out about 4 years post RT and had to have 7 weeks of hyperbaric. 2 weeks before the extraction and 5 after. It was 7 hours a day with an hour for lunch. Boring as hell lol.
I had one tooth out in maxi unit and went home with antibiotics then about a year later had 5 out front lower jaw had to go in hos and have antibiotics into the vein for 2days then home.this was 5 yrs after RT.iknew nothing about ORN then which is probably a good job,I would have been worried.i now live in Devon and don't know what they do here but my tooth will need to come out soon .thankyou Hagg for replying.
Little Rosie,I think they will suggest implants becouse they have had all the info from my old hos about how much RT I had and where in the mouth,also I'm being seen in the surgery clinic on wed,the prob for me is that my consultant who did my OP thinks they are not suitable becouse of the risks and he says they fail.i don't know how you cope with all the pain LR,I wish they could find a answer to your probs.ive also lost jaw bone but I think it was from surgery.xx
If you have to have any teeth taken out then make sure that you get hyperbaric oxygen before and after. What problems are you having with your teeth?
If they do offer to do implants you don't have to make a decision there and then. Get all the information that you can then go by your gut instinct of what you feel is best for you.
Don't be afraid to ask a lot of questions.
Well I've been hos today saw registrar,no teeth out,no implants,I said what about this tooth that's giving me pain and all broke away ?she said go emergency dentist and they will cover it and ask them to take you on and they can then take nerve out and cover the hole with a filling.this will not look like a tooth.if I do have to have teeth out I will have to have HBO before and after teeth out.the registrar said becouse my consultant who did my Op said its unsuitable for me they will not do implants.i except that but not taking any of my teeth out when nes I find hard becouse I've had teeth out since RT and was ok.i don't want to loose my teeth but I don't want treatment after treatment and tooth ache even less.its not easy for us is it.xx
Hi little Rosie,although he said no teeth out he said if I had to have teeth out I had to have HBO before and after,but I could tell he meant that would be a last resort.rosie I only have 13 teeth left when they go I will be up the river without a paddle,i just have to hope I can keep them till i no longer need them.hows things going with you and your teeth.
Hi L Rosie,I'm sorry your struggling with your teeth,it's a just about hanging on to the few I've got left,the gum on the one seems to be getting less and less.Im up and down my dentist like a yo yo.i could,nt bite anything hard they would fall certainly does,nt help your confidence either and if they cause you pain on top of all that it's to much to have to cope with.whats happening in your case at the moment Rosie?takecare.
Well this situation just goes on and on. I have similar problems to you Valerie in fact I cant eat solid food at all and have not been able to for 3 years. Gums have receeded and bone has gone. I have 25 teeth. Restorative dentist has built up some with composite resin and made me a splint but my own dentist did something similar back in 2010. I must have been backwards and forwards to that hospital(which is 100 miles away) 40 times in the past couple of years and am going yet again in the morning. What do I do now I have no idea. Bastard radiotherapy!
Hi littlerosie,how did you get on with the dentist? What a performance having to travel all that way then prob no joy at the end of the past they probably did.nt think about what RT does after treatment finishes to people like us becouse they just thought about saving our lives,but now more of us are living longer after treatment they need to find away to give us implants that does,nt increase our chances of ORN.We can't eat properly after the surgery then on top of that we can't chew food and that causes us to eat an even less varied diet.its cruel really ,we just get used to it I suppose.some times I'm still hungry but I get tired of eating after its took me 40mins or so,then I leave the rest.RT is a B Littlerosie.takecare
I feel for both of you with the teeth problems, but my problems with RT do not seem to get any better although they say that the problems are neurological. Thank you very much! Swallowing does not get any easier; tongue just feels like a lump of uselessness and is totally unwieldy and mouth gets no less sore. Speaking becomes less and less distinct. I would make more sense were I p****d - sadly I don't drink. I agree on the eating front. I was down to liquefied food for a while when the trigeminal neuralgia was back again with a vengeance (this time on the right). The extremeness of that has passed but everything else hurts, so am back to casseroled to death food, and trying to keep the jaw mobile is a permanent problem. Even dinners which I organise on behalf of the club I can't eat at. I eat in my hotel room and then just sit in, looking like the spare wotsit at a wedding. I might indulge in some ice cream - but then I start coughing...... Just as well I live on my own. At least I choke in peace. However, dentist and hygienist pleased with my actual teeth.

Life's a bitch - then it has puppies
Poor you - that really doesn't give one a lot to be optimistic about. Tramadol makes me feel iller than it is worth and Tegretol makes me feel sick. Am on Gabapentine and Oxcarbazapine and the pain suppression is better than nothing, but still does not stop the soreness and my tongue is particularly unwieldy at the moment and jaw muscles not working properly (shall have to make another trip to Chiropractor) - not helpful as I have a weekend coming up where I may have to do quite a lot of talking, though have put myself in a position where I have less talking to do than at other times and will not be competing with a load of other people. Talking loudly really doesn't help, but that is where the night guard comes into its own. It does help keep a bit of soreness at bay and means that the mouth does not get quite as dry as usual.

Life's a bitch - then it has puppies.
Hi,I'm in the same position has littlerosie,discharged from restorative dentist now they have ruled out implants,just left to get on with it and check up or treatment has needed with local dentist.they have said I cannot have any teeth out either so really left up the river without a paddle.they really need to search for a answer to probs like ours.either stop the RT causing us so much damage or a way of giving us implants without the added risk of ORN.oral cancer is getting more not less so they will see our probs more often than years ago,when it was seen less and usually older men it's anyone any age.takecare
I quite agree Valerie,
They need to face up to the damage that radiotherapy has caused us and stop trying to deny and hide what this barbaric treatment does to you.
People who have had breast cancer get rehabilitation. If it was head and neck cancer you are more or less told to clear off, Shut up,
take the pills and don't come bothering us as we have no idea what to do.
Why won't our doctors face up to the dangers of radiotherapy?

By Isla Whitcroft for MailOnline
Updated: 02:07, 25 November 2008


It's a life-saver for thousands - but the side-effects can be devastating.

A year after he'd undergone treatment for cancer of the tonsils, Richard Wayman felt a painful tingling in his legs. Within weeks, the 59-year- old shopkeeper was struggling to walk. He was admitted to hospital, where doctors carried out scans, X-rays and tests.

'The scans revealed lesions on my lungs, which raised fears that the cancer had spread, so I was admitted to another hospital for a biopsy and, as a result, contracted MRSA and pneumonia,' recalls Richard, from Colchester in Essex.

'From 11-and-a-half stone I went down to eight-and-a-half stone. I thought I was never going to get out of there.'

Dangerous side effects: Radiotherapy can leave patients with a lifetime of suffering

Side effects: Radiotherapy can leave patients with a lifetime of suffering

Finally, the lung lesions were diagnosed as a side-effect of the radiotherapy Richard had undergone for his cancer. However, his problems only got worse: a few weeks after a routine tooth extraction, the bone around the extraction started to crumble and become infected.

Within months he had an open weeping wound, running from his lower cheek through his jaw and into his mouth. The diagnosis: bone necrosis as a direct result of radiotherapy damage to the jaw.

Richard is one of the many thousands of cancer survivors who have developed terrible conditions as a result of the radiotherapy treatment that helped save them.

Around 4 to 5 per cent of all head and neck cancer patients suffer problems with swallowing or breathing, fistulas (open holes) in the jaw and gum, loss of taste and hearing.

But the problem is not unique to these cancers. Up to 10 per cent of breast cancer patients suffer radiation damage to their heart, lungs or the nerves to the arms (leading to loss of circulation and movement).

Every year, another 6,000 patients who've had pelvic radiotherapy treatment for conditions such as bowel cancer suffer long-term damage (including incontinence). A thousand of these patients go on to suffer even worse problems, such as intestinal failure or heavy bleeding.

It is clear that radiation damage is a significant health care issue. Yet, to date, there has been no national attempt to collate statistics that would enable any significant research work to begin.

Remarkably, it is not even officially classified as a specific medical condition; nor is there any definitive information on how to deal with it.

As a result, when it comes to treating the problems, patients can be offered a mix of options. Some are treated by a urologist, others are referred to a gastroenterologist, or an ear, nose and throat expert, while women often see a gynaecologist. This means many people will go undiagnosed for months and often years.

'Until recently, radiotherapy damage has not been a priority in the treatment of cancer,' says oncologist Paul Cornes, who runs clinics for patients with radiotherapy damage.

'It is not a deliberate cover up; but in the past, cancer medicine was all about the treatment and giving patients a chance of life. Now we must address quality of life after cancer.'

Damaging treatment: Alan Warren with wife Jackie

Damaging treatment: Alan Warren with wife Jackie

Dr Sylvie Delanian, a radiologist and oncologist at the Hospital St Louis in Paris, is one of the few radiologists around the world to research and treat the condition.

'Long-term radiotherapy damage is a taboo subject,' she argues.

'Radiologists are often frightened to discuss the matter with patients in case they refuse treatment. There is also the feeling that "we've saved your life, now go away and live with the side-effects".'

Indeed, some hospitals seem to actively discourage discussion about the subject. While we were investigating this article, one London trust refused to allow Good Health to speak to their specialist, while another major cancer centre barred us from a conference on pelvic radiotherapy damage.

Radiotherapy is an incredibly successful method of treating cancer, increasing survival rates by around 50 per cent. It works by bombarding the tumour or tumour site with X-rays to kill the dividing cancer cells. In doing so, it inevitably affects surrounding healthy cells.

But areas such as the bowel, lung and jaw seem to be more susceptible to long-term damage. The precise reason is not clear, although it is thought that the mucus which lines the bowel and the delicate sacs in the lung are extremely vulnerable.

Long-term damage can appear as fibrosis (an overgrowing of healthy cells as they go into overdrive to repair the radiotherapy damage) or necrosis (the death of the tissue, causing open holes or fistulas).

Radiotherapy can also damage nerves, reducing blood circulation or causing breathing difficulties, with side-effects often not appearing for several years after treatment.

When Alan Warren was diagnosed with rectal cancer four years ago, it was, understandably, very worrying. The taxi driver and father-of-two underwent chemotherapy, then radiotherapy, to shrink the tumour, before it was removed along with several inches of his bowel.

'My oncologist said I would be back working within four months. Fours years on, I'm still unable to work,' says Alan, 55.

During those years, Alan, from Christchurch, Dorset, has suffered unimaginable pain. He has also suffered the indignity of urine leaking out through his back passage after he developed an internal fistula 12cm long, running from the top of his bladder to what was left of his lower bowel.

An operation to close the fistula failed. After that, the only option was a permanent catheter.

'My problems were all blamed on scar tissue from the original cancer surgery, so I was referred to a urologist for treatment.

'By chance, Alan's wife Jackie, a nurse, came across an article on radiotherapy damage. 'My urologist reluctantly admitted that I probably did have it,' says Alan.

In the UK treatment tends towards cutting out the afflicted area if necessary - which often results in more scar tissue and pain. But there are other options.

Jervoise Andreyev, a gastroenterologist at the Royal Marsden, London, uses anti-diarrhoea medication, pelvic exercises, antibiotics and dietary changes to treat the problem if it's in the pelvis.

Meanwhile, Dr Delanian uses a combination of three drugs: vitamin E, pentoxifylline (for vascular and circulatory problems) and clodronate (bone disorders).

Her success rates are impressive, with research to back these up going back over a decade. After contacting the radiotherapy damage action group RAGE, Alan and Jackie found out about Dr Delanian, and in October last year they visited her in Paris. Thanks to treatment, by January 2008 Alan's fistula was gone and he was healed.

Richard Wayman also saw Dr Delanian. Six months later, the hole in his face healed.

The leg weakness and tingling have stabilised, too.

But despite the fact that some UK doctors are quietly following her method, it is not a mainstream treatment, and many of her patients find that in the UK they are refused the drugs she prescribes.

In 2006, the Royal Marsden carried out a trial into Delanian's treatment on breast cancer patients, but announced that it failed to show any significant improvement.

Paul Cornes says: 'Newer radiation therapies such as intensity modulated radiation therapy (IMRT) and proton beam therapy deliver more accurate beams with significantly lesser side-effects.

'Unfortunately, IMRT is not yet widely available in the UK, and proton beam therapy is considered too expensive for the NHS.'

Dr Delanian adds: 'Radiation is a great tool, but can also be very dangerous. As a profession, we should try to find a way to minimise the risk and deal with the effects.'

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This is a very old article yet there have been no improvements at all. It is still a taboo subject and we are left to suffer.
Would a trip to Paris be of any benefit?
Reading your email Littlerosie part of me is glad that I decided this time not to go with the radiotherapy, on the other hand it's like having a cloud hanging over your head wondering if it will strike again for the third time. How I hate this disease. My appointment for the results of my latest scan is 23 June, my son also gets his results that day as well,
I will let you know what is said.

Take care my friends.
Not been here for a while since loosing my husband to the side effects of RT. This has made very interesting reading. In my experience we was told some of the side effects but not the severity or the fact that a small percentage of patients can find themselves in dire straights as did my husband. ALEX ticked every box of what problems you can be left to deal with after RT but it's the chance you take in order to survive.
As they say hindsight is a wonderful thing !!!

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