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Hello all

There seems to be a lack of activity at the moment.
How do you all go finding a dentist who understand cancer treatment and the consequences?
I have seen a few dentist in my 17 years post treatment and each one of them has told me that as it was so long ago it is irrelevant.
This is unfortunately not true but its not easy trying to explain this to a dentist
Was anyone given a dental alert card from the hospital or told about fluoride trays?
What about descale and polish at the hygienist?
I have been having 3 monthly ultrasonic descales on the advise of my dentist and have had periodontal deep cleaning and then read...Special Mouth Instructions for Head and Neck Radiation Patients

During Radiation Treatment

Always notify your dental office that you are having radiation treatment so that they can check with your radiation oncologist before your visit to discuss necessary treatment for your specific condition. You may need antibiotic premedication before any dental work or dental cleaning is done. An ultrasonic scaler (water scaler) should not be used for dental cleanings and no deep scaling which could expose the bone.

Many of the head and neck radiation patients will experience mouth problems during radiation treatment due to the effect of radiation on the salivary glands. Your doctor will try to lessen these effects as much as possible with shields that will protect the salivary glands, but this is not always possible. Approximately one week after radiation begins, your mouth may become noticeably drier, your tissues may become thinner and more prone to infections, and your taste may be altered.

These problems will usually end from several weeks to months after the radiation treatment has ended; however, dry mouth may persist. Dry mouth promotes decay of the teeth and you will need to have fluoride tray treatments every day for the rest of your life. Follow the fluoride treatments instructions above. By keeping your mouth moist and clean, you will have a better chance of avoiding mouth soreness and infections.

Use the baking soda/salt rinse often to help keep your mouth moist and clean (see Rinses in Mouth Care During Treatment).

After Treatment To Top of Page

All Head and Neck Patients

There may have been permanent changes to your mouth due to the radiation therapy which will put you into a special medical-dental category. Check with your cancer doctor to see if you need antibiotic premedication before your dental visits.

Patients Without Teeth

No new dentures until gums have returned to normal. This may take 6 months to a year or more.

Dentures should fit without soft relines and cause no irritation to the gums.

Have an oral cancer examination every time you have a dental check-up.

Patients With Teeth

Continue the daily fluoride treatments for the rest of their life. Do not use an acidulated or flavored fluoride. See fluoride tray instructions in Mouth Care During Treatment

Have dental check-ups regularly and always have an oral cancer examination during your visit.

There must be no trauma to your mouth tissues, gums, or bone during any dental procedure. No ultrasonic scalers or deep scaling during cleanings as this may cause bone exposure.

Dentures or partials must fit with no soft relines or irritation to the gums.

No teeth removed or periodontal (gum) surgery without consulting your radiation oncologist or dentist who did the preradiation work-up.
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I think that it's not such a bad thing to go into treatments with your eyes open to an extent. I had seven weeks of RT and apart from a bit of mouth discomfort and nausea didn't fair to badly. I scrapped hospital transport on the first day because it was late, rode my motorcycle there every day and put on weight right through it. For every bad story there is a good one too.
The forum has been quiet for a bit but it has its ups and downs and goes quiet now and again.
Hi all, re teeth, just been hospital about my teeth,plan is hydro chamber,teeth removed and then implants and dentures fitted to implants.this is if im suitable,My surgeon here is contacting the surgeon who did my op to see where and how much RT i had , then they will decide the risks of ORC.The surgeon said my teeth are vunerable,i know they will have to come out at some time risk or not.xx
i had my RT in feb,March, 1999.I had 5 teeth out 5yrs later then managed to keep the rest till now.My consultant told my friend that usually by 12yrs after RT most of his patients have got or had problems with their teeth.the teeth problems also compound my eating probs becouse of not being able to chew anything properly i have a even smaller choice of foods which i can eat.
At the start of my treatment I was given very little dental advice. All I was told was that if I had any dental problems they should be sorted before the start of treatment. Nor was I given a lot of advice about lack of saliva - the whole thing was treated in a rather cavalier way. Lack of saliva does no good to anything and I had to have the upper right back molar removed last July. No one was consulted - it just had to come out - I don't think I could have stood the pain if we had had to wait for oncology to come back to us. I only have one 'real' molar left as the rest are crowns which were done in early 2011. Haven't heard about fluoride trays.

Major problem at the moment is trigeminal neuralgia, which really is no fun at all meaning that the diet is even more restricted than usual as anything sweet or anything acidic sends searing/burning pains into the mandible on the left side.
Hi all,littlerosie i was sent by my GP to see MR Essan at Royal devon hos becouse i needed a tooth out,I waited about 2mths then he refered me to see a resteration dentist,at musgrove hos taunton.He said about implants,i waited 3mths for that appointment.when i had 5 teeth out in another hos in the midlands i did,nt go in Hyperbaric chamber had to stay in hos for 3 days and have intavenus antibiotics.I had 1st session of RT and the second day i got there i felt really sick and i told the lady, she shouted to her mate,We have a great one here,she,s going to be trouble. I really did,nt need to hear that,actually it was a bug which i picked up at home and i was ok the next day, much to their and my relief,lol.take care x
Hi littlerosie, Pain relief for the neuralgia is not easy to come by. Doctor started me off on Gabapentine but that made my mouth even drier than it is already, so we stopped that one. Now we are trying Carbamazapine - which seems to come under the Tegretol banner. One is meant to build this up gradually. I got to 400mg a day with it making precisely no difference but I increased to 200mg (with 100 at midday and another 200 in the evening) and that did make a difference to the pain at that stage but was back with a vengeance by evening. It doesn't help on the stability side - I am not the steadiest person on my feet at the best of times. Also I find it quite hard to stay awake, which is annoying. However, I am seeing my Chiropractor, who is being very useful and we do seem to improve the condition for a bit. I find it is essential to keep the area warm - never mind that I look daft wearing a trapper's hat on an apparently warm day!

On the transport front, I drove myself to all treatments, though a chum insisted on being with me during the chemo sessions - we had a good supply of crossword puzzles! My 'round trip' was only about 35 miles, so not too bad.
HI,Hope you both get the pain sorted out,it must be awful being in constant pain,its enough to have to cope with the other effects of treatment without trying to cope with daily pain on top.On the transport front i only had to travel 10mins in a car,i did,nt realise others may have to travel any thing up to 86mls round trip.Is it becouse you live in rural.
I got so fed up - and dragged down - by the pain this morning that I phoned my radionics practitioner. (For any sort of explanation on radionics I'm afraid you'll need to google it - I have been using it for MANY years and it can't do any harm). I am told that trigeminal neuralgia is very difficult to treat but they had several treatments for this. Within an hour my mouth was 'liveable' with - eating still not much fun but bearable. A great improvement.
My GP has actually been quite useful on this one and at least isn't 'anti' my alternative methods.

I am also rural - like middle of field - with nearest shop of any kind 5 miles away.

Can you please tell me for how long after/side effects can continue to kick in - and how long they take to go away again (if ever)? The right side of my neck was the most troublesome a year ago, but that has now transferred to the left side, which is the side which received the stronger treatment.
It rather proves what I thought - it never goes away - but they aren't about to tell you that or I suppose no one would ever start! I asked one doctor I saw when the neck stiffness would go away and all he would say was that one couldn't hold back the aging process... Wasn't happy about that as I think I am old enough to know the difference between aging aches and pains and stiffness that isn't actually natural.

I totally agree about seeing things as a whole. Whatever anyone specialises in they do tend to have blinkers and one pretty much has to self diagnose for may of these things.

Thank you for your help and encouragement.
Update time. It took me until about Thursday or Friday last week to realise that if I could sleep properly and without pain, then my jaw must be in a good place and not disturbing the trigeminal nerve. On waking up I find my jaw is pretty much 'locked' in a backwards position and it is when I 'unlock' it and it 'clunks' forward that things start to hurt with pain running along the lower jaw and aches going into the neck - which makes one feel rather unsure and wondering whether things are 'coming back'. I resolved to try to keep my jaw in the locked position as much as possible and open minimally for speaking and eating. If one is being asked a string of questions this is quite difficult to achieve, especially as the mouth dries out as well and EVERYTHING gets sore.

Anyway, I saw the chiropractor this morning and he knew exactly what I was on about and I think we may be making some progress on that front. Then it was the dentist, who understood what I was saying and trying to do (keep my jaw as fixed as possible whilst still being able to manage). He is having a device built which fits over the top four front teeth and has a slight wedge shape against the bottom teeth rest, therefore pushing the jaw back, and minimising clenching, as much as possible without it being uncomfortable. Not being able to subconsciously move the jaw forward means I won't have to concentrate on it so hard and the muscles will not be under so much tension.

This gadget arrives on Thursday, so we will see, but even by making the conscious effort to keep my jaw back has improved the pain along the bottom teeth and into the neck, so I feel I am on the right track - and mentally better to cope as well.
Many thanks for that - that seems to be the sort of thing it is. The picture that I saw seemed to be bringing the jaw forward, to in front of the 'clunk' - if you see what I mean - to get the teeth to meet level at the front. This is not actually what we are aiming for and I can see that that could well cause an open bite.

My lower incisors fit very snugly behind the top ones, so a very minimal adjustment will be needed just to stop me having to consciously hold my jaw back and this should allow the masseter muscles to relax..... We are definitely not trying to get the front teeth to meet in a level bite.

Time will tell....
OK, so I collected the device yesterday afternoon and find it to be more comfortable than expected, although I did wonder how sleeping would be, but it was absolutely fine. I don't know that it puts my jaw exactly where I want it, but that is OK. At least the jaw isn't locking, which has to be a good thing, and I am not getting the pain along the bottom teeth and into the neck which has to be right. Time will tell whether the burning sensation at the back of the mouth wears off - haven't been wearing it for 24 hours yet.....
It is clear plastic and fits very snugly over the six top front teeth. I don't think there is any chance at all of it falling out and becoming a choking hazard. I realised very soon that the 'block' behind the front teeth was too high and was pulling my jaw forward, which was rather defeating the object.

By Sunday evening the pain on eating became so intense that I had to be peeled off the ceiling, but I took a painkiller and hit the jaw to the left and managed to eat supper. Monday morning made an appointment to go back to dentist - why he puts up with me I don't know. He looked at and X-rayed a tooth that was possibly causing problems, but it wasn't. He then shaved a lot off the 'block' on the device and the jaw is instantly in a much better place.

I am currently wearing it as much as possible - obviously not at meal times - but day and night. Slight further adjustment will probably be needed but I will try to let it settle.
Hi littlerosie - it's been a bit quiet of late - too much to do.

I have got to the stage where I hardly dare to eat as most things I try to eat have me tears and the pain is so horrible that I have to be peeled off the ceiling.

Visited Chiropractor this morning and the ridiculous point was that he tried to trigger the problem with pressure, but couldn't. It is a sensation thing, and my goodness don't I know about it!

What sort of diet do you manage on?
Hi littlerosie.
We seem to be on about the same level regarding treatment to very little effect. My chiropractor spent some time yesterday morning trying to find a trigger point - but failed. He wants me to try a Pain Clinic. I'll try.... GP has put me on yet another nerve blocker but am still waiting for it to make any difference. Seeing him again on Thursday. Had to have severe abdominal surgery in 2010 and they wanted to check me out on Friday, so had to drink 2 litres of Moviprep on Thursday. I didn't think I was going to be able to manage it the pain was so great - ascorbic aid. I am surprised my neighbour didn't arrive on the doorstep wondering who was being murdered!

My diet consists of porage (I have always spelled it like that) for breakfast having taken a painkiller half an hour in advance. I haven't even attempted anything in the middle of the day lately as I really don't want to rely on painkillers and supper (with painkiller in advance) is something casseroled to death, although a lot of things tend to be too salty, with pasta. Can't do potatoes as the are the wrong texture. Bread I haven't been able to do for a long time. At the moment water is the only thing I can drink and sometimes that is very painful. So it goes on...

I'll let you know what the GP says on Thursday.
Hi littlerosie,

I am also very stubborn about taking prescription drugs and my brother and I have the same attitude to painkillers in that we reckon we'll save them until things get really bad - then one wonders how bad it has to get! And I am REALLY anti anti-depressants. So far the latest batch of nerve blockers hasn't made a scrap of difference. I will be seeing the doctor tomorrow afternoon. As I said, my Chiropactor tried very hard to find the source of the pain but failed but this morning a touch of toothpaste and a drop of water really had me not knowing where to put myself. I would love to be able to find the mechanical cause. Let's hope someone does.
Hi littlerosie,

I took my Voltarol this morning about an hour before breakfast and my standard dose of Pilocarpine and Oxcarbazine (I think it is) and was amazed that I managed to eat porage with relative ease. When I realised that the Voltarol hadn't worn off I risked a cup of 'Mocha', which was very nice. Couldn't believe that things were fairly calm. Doctor says he is determined that we are going to 'win' this battle. I am upping the dose for five days, see how it goes and then up one more. Like you, I hate medication, but something had to be done. Hard exercise - wish I could but I know that what you are describing would wreck my back and I can't be doing with that as well - it is permanently dodgy as it is. However, I do walk the invisible dog as much as time allows(?)!

I was actually worrying about going down to my family over Easter as I really didn't need the grandchildren seeing me in such agony whilst trying to eat. Feeling a bit better about that now. But probably still won't be able to manage much - I will be doing the majority of the cooking (I know my place!) and ending up with Yorkshire pudding and lots of gravy.

Certainly feeling more positive today - have had a lot to do in the organising line. Keeps one busy.

Bless you for your support.
Hi littlerosie.

Pills making me very sleepy at the moment, but I have managed to eat something today - not altogether comfortable but better than it has been. I doubt that I'll be eating much Easter lunch. I thought I was going to enjoy some fish this evening - I was wrong! Never mind, the neighbours always do quite well from whatever it is I can't eat. I think I can work out where the actual trigger point for all this trouble is, and it is sort of below the corner of the jaw on the left which is the area most hit by radiotherapy. Great!! I see ENT again on the 22nd. So far anyone at the hospital doesn't seem to have been that interested.

So sorry to hear you lost a 'gorgeous giant'. That is always so hard and probably the reason I don't have any at the moment.

Family is 80 miles away and I get to see them quite a bit, depending on how busy everyone is, but I seem to be available for child minding duties. The grandchildren consist three girls and a boy - 10, 8, 6 and 3. Grandson (3) is turning out very like his grandfather - the same wicked sideways look. The would have got on like a house on fire.

Voltarol. Yes, it is a very effective 'rub' but I first came across it as an oral medication for muscle relaxation. It can be bought or prescribed.

Stay strong
The problem, though not 'better', is not QUITE as bad as it was. Mind you that isn't saying a lot!

Never mind the eating too much - I must make myself take fluids on board - otherwise I will dehydrate! Eating is currently an unwelcome necessity. I am on porage in the morning and then shredded chicken wings mixed with a sauce and some pasta for supper. What is really annoying is that I can't even manage asparagus at the moment, and I was enjoying that. Fruit is out completely...

Yes, Easter will be chaos, but that is nothing new. Possibly less chaotic that Christmas as, if the weather is decent, the garden will come into use.

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