Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Teeth and Radiotherapy

TTIGGY
Posted by

Eastmans Hospital want to take out 6 of my back molar teeth because I need RT on my Parotid gland.  The tumour was removed but there is still some cancer in there.  My question is:  has anyone ever got through the 6 weeks radiotherapy without trismus or loosing any teeth due to caries?

Anything info would be helpful, even is the response is no ... let them take your teeth out :-)

Thanks all

Trish

TTIGGY

chris2012
Posted by

Hello Trish ,  i have never questioned what my consultant recommended and touch wood he was right in his recomendations , they need to remove the teeth so they get a better chance of targeting the radiotherapy also the radiotherapy will ruin the teeth in the long run causing problems futher down the line . Good luck with the treatment ,take care .

                                                                                               Chris .x 

Its sometimes not easy but its worth it !                Click here to find out more

JosieFromGlastonbury

Hi Trish,

I had four back molars removed before my radiotherapy.  The dentist explained to me that they recommend removal of teeth that lie in the path of the radiotherapy beams, because radiotherapy damages the blood supply to the teeth and the bones that hold them.  This means that if, in the future, the teeth need to be extracted then there is a much greater chance of the sockets not healing properly because that blood supply is needed for the healing.

In turn, that can lead to osteoradionecrosis, which is where the bone itself becomes infected and sometimes dies.  Nobody can predict whether they will need major dental work years or even decades in the future, so this is the one chance to pre-empt that.

The issues of trismus and caries are secondary compared to this, but they are important in their own right.  At the start of your treatment you should be given a set of exercises to stretch your jaw throughout radiotherapy and during healing.  Mine consisted of a sheet of different exercises that I had to do five times a day, and although it is difficult, it is well worth persevering with them.  My jaw muscles became quite stiff during treatment, but it recovered fully afterwards.

As for caries, I would recommend getting a full workthrough with a dentist and hygienist before the start of your treatment, and then make sure that the hygienist gives you plenty of advice about how to take care of your teeth and mouth.  During radiotherapy your mouth may get too sore to look after your teeth in all but the most rudimentary way, and it is a good idea to have a baby toothbrush ready just in case.  I had about six weeks where my mouth and gums were so sore that this was all I could use, but it takes a lot longer than that to develop caries so bad that it destroys the whole tooth.  Once your mouth has healed after treatment, there is nothing to stop you from looking after your teeth properly again, even if you have a few weeks or months where it is hard.

Best wishes,

Josie

TTIGGY
Posted by

I hear what you are saying, it seems that my resistance to them removing my teeth is likely to cause me problems in the future.

TTIGGY

TTIGGY
Posted by

Thank you Josie, I think I shall probably amend my feelings on the tooth extraction.  Thank you for the advice and I am hot on the trail of finding exercises.  

It's so useful to get the feedback here.  Makes you feel more 'normal' (although certainly I have always been a little odd .  Good tips and advice as well.  Makes me feel a little stronger.  Knowing you got through it makes me feel more certain that I will too, eventually.

TTIGGY

DLC23
Posted by

Hi

i developed osteradionecrosis in the jaw bone where the teeth had been removed- so that would have probably caused problems if they had still been there. 

Fortunately at the moment it appears to be a small patch and the dead bone worked it’s way out. 

June 14 surgery for Carcinoma in sublingual salivary gland. Partial glossectomy, left neck dissection, reconstruction with left radial forearm free. flap. Postoperative radiotherapy 6 weeks.

My blog

TTIGGY
Posted by

As an update to this I would post that I did not let Eastmans remove 6 of my back molars.  When I got back to the Dr. treating me in Radiotherapy her response was that she had 'no idea why they wanted to remove 3 of my back molars on the right hand side of my mouth' because - in her words "we're not going anywhere near there.  

This is important, because I have spent most of the last 12 weeks chewing on that side of my mouth and at 7.5 stone for most of my life  it was important I did not start to drop what little weight I do maintain.  So I have not had to have a tube down my throat and not required additional supplements to my food, or a tube into my stomach.

Despite Eastmans assurance that the level of radiotherapy I was having would most likely lock my jaw - it didn't - and everyone at UCLH said they felt I would get through the process without my jaw locking... so it seems it was just Eastmans Dental Hospital that had this notion.

Prior to going into radiotherapy treatment I had a FLUORIDE VARNISH at my dentist (and i put this in capitals so that anyone reading this afterwards gets the information they need), because studies showed that this helps remarkably and it certainly did for me.  In addition I had the high fluoride toothpaste prescribed to me also by my dentist but the hospital can also prescribe it for you (which I started using 3 weeks prior to treatment), I also bought a water jet flossing machine (about £26 quid on Amazon), used Xlyimelts overnight (both to keep my mouth moist and because the germs in your mouth feed on the Xylitol rather than your teeth).  I have been brushing my teeth as soon as I have finished eating and I cut down as  far as I possibly could on sugar

At the end of the 6 weeks radiotherapy I returned to my dentist and he advised there was no decay at all, no problems with the jaw and he applied another fluoride varnish which you can have every 3 months.

So I think the up shot of all this is :  Don't do what someone else on here suggested and never question you Doctor.  ALWAYS question what's about to happen to you and make your own judgement for what is best for you.  For me having 6 (which is basically all but two) of my back molars removed would have been demoralising and made it difficult for me eat and maintain weight.  So I feel I made the right decision.

It is your path to walk :-)

TTIGGY

Marcusaurelius
Posted by

Hi there,

I was diagnosed with Nasopharyngeal Cancer back in April 2017, 6 week daily treatment of targeted radiation and the nasty "Cesplatin" Chemotherapy.

Three weeks before treatment started, the hospital Dentition wanted to remove my upper and lower rear molars, he didn't force me or make me feel uncomfortable, but did reiterate that he recommended it, however, I have always looked after my teeth, regularly see my own highly respected dentist and decided on a second opinion, even though he did send his recommendation correspondence to her outlining his concerns. 

Although she respected his decision and concurred with his reasoning, she also pointed out that my molars were in fabulous condition, no eruption or signs of weakness or decay, therefore concluding that it was indeed my decision, and that it would be a shame to remove what were in her opinion, very healthy, and quite deep set teeth, plus, the chances of complete healing before Cancer treatment began and all that that entailed was very slim.

I therefore declined to have my teeth removed and went ahead with my treatment program with targeted radiation to the rear of the mouth / throat, and I must stress that at no time was i made to feel awkward or wrong for choosing not to have extraction.

I realise this is a purely personal decision, we must all do what we feel is right for us, both physically and mentally, my decision will not necessarily be yours, and i was, and still am aware of the complications that "may, or may not" have occurred in relation to my decision.

However, nearly two years on in March 2019 i am healthy, happy, free of pain or complications, with no repercussions and living my life as i once did........ for me it was the right decision, I simply felt i had gone through enough with the initial diagnosis and exhaustive tests, and as near as i was to starting what is a very harsh treatment regime, i simply declined further trauma and pain.

Whatever you choose to do, it must always be your decision, and yours alone.........

Wishing you and others starting, or going through their treatment, all the very best for the future ....things really do get better, it just takes a lot of time, never lose the belief in yourself.   

Marcus.

Marcusaurelius

MikeO
Posted by

Interesting discussion this; I was in the camp of putting my trust in my team and going along with what they advised (possibly was referring to me in the, "Don't do what someone else on here suggested and never question you Doctor...." comment or maybe not, doesn't matter). My dental health wasn't great anyway and I knew at least one molar needed to be removed even before diagnosis, in the end they took out three (during my dissection so no trauma/pain involved).

I do though absolutely agree with the attention to detail in caring for your mouth and the water flosser is a great call, I see the hygienist every three months now and she's very happy with the health of my teeth, as is my dentist. Could I have kept the two seemingly healthy two that they took out? I'll never know, but I'm very comfortable with the decision I made which was to not question what my team judged was best for me.

Everyone needs to make their own decision, there's no right or wrong.

 What is a Community Champion?

Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.

http://mike-o.blogspot.co.uk/

chris2012
Posted by

Hi TTiggy, I like MikeO had teeth removed during surgery so it was ready for radiotherapy, i never questioned it at the time and was never offered any advice. Although i lost all my bottom teeth due to cancer of the lower jaw my top teeth are decaying badly due to the radiotherapy, it does not help that i cannot open my mouth very wide due to jaw reconstruction. Maybe times and techniques have changed since 2009 for the better, lets hope so as teeth are very important. Thanks for this update, all the best.

                                                                      Chris x

Its sometimes not easy but its worth it !                Click here to find out more

seeker1
Posted by

I also questioned Doctor M since my cancer was in my voicebox why my all my teeth had to come out. She replied it was an Eastman decision not hers. I must add that they took them all out with hardly hurting me at all. 

TTIGGY
Posted by

I agree with everyone here, it has to be a personal thing, your path, your choice.  I think you also have to marry it up with other factors, I - like others on here have very good teeth I have always looked after.  I should also add that when I declined to have my molars removed I did advise Eastmans that I accepted that if I ran into trouble later it would be entirely my own fault.  However, they said "no, it won't be anyones fault and when you need help, if you need help we are going to be here for you.

I should also add that I have also had trismus (lock jaw) some 25 years ago when I had a 3 wall decompression of both my eye sockets - so I knew what would be coming at me and knew I would have to keep my jaw open with exercises as much as possible, I am grateful that for me that worked.

Thank you for all the additions here and I hope that if anyone stumbles across this thread in the future they can look at all of the options, all of the decisions and opinions and hopefully it helps them make theirs with peace of mind 

xxx

TTIGGY

seeker1
Posted by

Thanks . I would add that Eastmans told me that to put them back in again which is very costly i would have to pay myself. I would add be very careful with RT read my posts as I believe they over radiated me and I suffer terribly

Marcusaurelius
Posted by

Hmmmm

I think the overriding thought here is that it is a very different scenario for each of us, one size definitely does not fit all.

If you have other complications, have had old exploratory examinations, teeth that are clearly not up to par, or just want to go ahead with what has been recommended, all of those are of course acceptable.

I never really saw it as "going against my teams advice" because it was never made essential to me that they were removed, I touched on the subject, then probed and pushed it a little more, really trying to gauge whether it was "essential" or simply recommended ? 

My hospital dentition finally said after i had bombarded him with reasoning and other opinions ( which he never once took offence with, or made me feel as if he knew best )  and i quote " Mr Robbins, it is entirely your decision, I am simply making a recommendation based on my previous experience, I am not going to tie you to the chair and extract them under duress"

On that reply i then made the assumption that it was indeed my choice and not a matter of ...."well, if you don't, this is going to happen" even though i was made fully aware of possible side effects in the future, the operable word here being "possible" not definitive, I still decided of my own free will to not go ahead.

I am not saying for one minute this was the right decision per se .... it worked for me at the time, it was, and is, my choice alone, and i think we are all in agreement that in the end we must go with whatever we feel is best for us in the circumstances outlined.

This is not a asking you to follow my lead, but purely to say in "some" cases you may have a choice, even if that choice is not the one recommended to you.

  

Marcusaurelius

TTIGGY
Posted by

One of the things I  found helpful in regard to cancer was people who updated there experiences with how they got on.  

22nd September

So I am  7 months post radiation now and in regard to my teeth (as Eastmans insisted they would need to remove all of my back molars).  My dentist yesterday advised my teeth were showing no signs of decay whatsoever.  The gums are healthy.  Right now all I am doing is continuing to have the flouride painted on my teeth every three months, brushing my teeth after meals and seeing the hygenist every 6 months.  

In regard to the Trismus, it continues to be there, but it is very much kept at bay with the regular stretching, so all seems to be well.

I still insist that I would be in a far worse place today had I allowed Eastmans to remove my teeth and I feel vindicated in this because when I mention it to the Prof. he simply said 'we don't do that short of thing nowadays' which makes you wonder why Eastmans still are?

Hope this helps with any decisions anyone has to make in regard to their treatment.

TTIGGY