Dental Care

Hi Stevie

The damage that occurs to your jaw can lead to a condition called osteoradionecrosis where the bone cannot heal due to fibrosis (scarring). Extractions are fairly safe in the first 18 months after when fibrosis shouldn't be advanced. I had a wisdom tooth out at 2 years, t should have come out before treatment really,  and I'm fine. Any invasive dental work has to be done at a dental hospital but not everybody is at huge risk. The jaw gets different doses. I know the only real risk I carry is my left mandible. The rest is low.

RT annihilates salivary glands and the major producers of background saliva, the glands under your chin, are trashed but we have lots of minor glands dotted around the mouth and these do recover somewhat. Radiologists try to spare one parotid gland which sits under your ears and which reacts to food in the mouth. I had RT to both sides of my neck and one parotid is safe. My saliva is quite acceptable and most folk undergoing the same treatment manage just finer.

Night time can be difficult so I use a xylimelt tucked into my cheek which keeps my mouth moist. During the day I chew gum if my mouth gets too dry and that works well but after nearly seven years is beginning to cause some tooth wear so I use a sleep guard at night.

The toothpaste is Duraphat and you get it free on prescription. I also get Bioxtra mouthwash with is formulated for dry mouths, is very soothing and tastes nice. I visit the dentist and hygienist  every six months and get a fluoride varnish every three months. I recommend you do the same after treatment and get a varnish before you start.

Stevie30e348 said:

I guess I'm going to have to change my diet and avoid all sugars and much as possible

If this idea is to save your teeth it's really not necessary. I haven't and still enjoy sweet things but I have them with meals and I don't snack.  My regime is brush teeth/ interdental brushes before breakfast and rinse mouth out afterwards with plain water and bioxtra mouthwash. Brush half an hour after lunch. Brush and interdentals after Dinner. I'm fast approaching seven years after treatment and my teeth are fine

If you are worried about sugar because of the "cancer thing" that's another ball game

Try not to overthink. Your dental doctor telling you that you will be alive needs a good kick up the bum to install some bedside manner. You will be more than alive....you will be well.

Dani thank you for your reply. It's very helpful. I discussed avoiding sugar with my Consultant Oncologist and he said that although there is some evidence that is might fuel cancer cells, it is as yet conclusive.  He asked me to just eat as much as I can and try to put on some weight.

The doctor at the Maxillofacial Clinic said avoid sugars to keep my teeth in the best possible condition.  She gave me a prescription for six tubes of the toothpaste but I then discovered the hospital did not stock it and they wouldn't order any in for me.  I was told to go to a local pharmacist.

Apparently the GP at Primary Care will not prescribe the toothpaste as it's dental.  There are no dental surgeons taking on NHS patients in my area, therefore I may have to pay for private prescriptions from my current dentist.  

I have a stomach feeding tube being fitted on Monday morning. Apparently O will have this until at least January next year. I'm having one tooth out tomorrow to be on the safe side in the future.

Best,

Steven 

After treatment I was eating cream buns, doughnuts, biscuits, trifle, anything to build up calories and stabilise my weight, my CNS, Dietitian and dentist all accepted this as necessary at the time, my diet is healthier now....2+ years after chemoradiotherapy for tonsil and neck cancer.

Duraphat 5000 should be available on prescription, I use it 3-4 times daily, also use a Duraphat gum tray daily for 30-60 min.

I've had a filling since treatment finished, no problems.

Hi Stevie and a warm welcome from me.  Frankly once treatment has finished and you are in recovery then eat whatever works for you and be prepared for what works one week to not be palatable the next and then acceptable the following week! 

During treatment and in the weeks following you will need to pile on the calories as the body will burn through those healing itself.  You also need to keep weight on if at all possible to ensure the mask is a tight fit.  Keeping the PEG in until January sounds about right.  I kept mine in until I had my 3 month check scan although by that time I was only maintaining it and not using it for feeding.  As others have said things like cream buns were my go-to foods for a few months

Dry mouth varies for person to person and over time.  During the day I now chew gum, sip water and like a beer with a meal to replace the saliva and help swallow.  At night I use Biotine gel from my GP as I did not get on with Xylimelts.  I wake a couple of times in the night to replenish it.

For dental work I have an NHS dentist (lucky me) and they get the OK from the hospital before doing anything.  Fortunately my oral surgeon seems to think I escaped significant damage to my jaw so not everybody has post treatment issues.

Hello Peter. After the peg was fitted, did you have to have any time off work?

I was not working at that stage having chosen to close my business when I was first diagnosed in 2019. 

With the PEG itself then after around 24 hours it had settled down well and I feel I could have gone to work if needed. Some do have more difficulty with the PEG than I did.

However once RT started then work is realistically impossible due to time constraints and generally feeling really rough after around week 3.  I was driving myself to RT until I needed to start on opioid pain relief - then I stopped driving. 

There is no way I could have gone back to work for at least 3 months post treatment.  However each of us is different and sometimes we have to push through the issues depending on our own personal circumstances.  Remember that once you have a cancer diagnosis you have a protect characteristic as a disability and your employer has to make reasonable adjustments to accommodate you.  Macmillan can advise if you are feeling pressured.

Thanks Peter.I now work part time in a small hotel and only work nights. Most of the time I'm sitting at a desk just doing some important, but simple banking reconciliation on Spreadsheets.  My Consultant said I'd be able to drive to and from the radiotherapy treatments each day across the seven weeks.  I'll be working at night then with sleepy during the morning before the radiotherapy or working overnight, then going to the hospital and sleeping all afternoon and early evening. It's going to be trial and error I think 

Stevie30e348 said:

Apparently the GP at Primary Care will not prescribe the toothpaste as it's dental. 

Go back to your GP. There is an exception for head and neck cancer patients undergoing RT who do not have access to an NHS dentist. This is the law. They cannot refuse 

Steven

These are the guidelines for Staffordshire. I just have a copy. They are the same for every NHS trust. Go back to your GP and show them 

https://www.staffordshireandstokeontrentformulary.nhs.uk/docs/gcp/Policy%20for%20the%20prescribing%20of%20products%20for%20dental%20conditions%20in%20primary%20care%20v1%20(April%202023).pdf?UNLID=2587096642025718925

Dani thank you. My wife has Lupus and a related condition. She has free prescriptions but has to pay for the same toothpaste that I've been told to use for every more. At £15 a tube that becomes expensive over a month. Particularly if we both have to use it.