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Hi Ttiggy. Good to hear your news about yr teeth. Hubby went to see hospital dentist before starting radiotherapy and chemo. Dentist examined had scan results etc. Then asked hubby what he wanted to do about his teeth. Hubby that he preferred to keep his teeth if at all possible. Dentist was happy with that. We have heard stories from other patients seeing same dentist where maybe one or two really needed to be removed and the rest were left.. So perhaps Eastmans need a wake up call.
Hi Tiggy. You are so right that updates from others are really helpful. Its very interesting that you insisted on keeping your teeth, and that has worked out really well for you. The fact that you are meticulous at cleaning is so important.
In defence of the sometimes radical treatment plans of some Dental Consultants - they see a patient only once and, knowing the severe risks of osteoradionecrosis which can occur if teeth need removing after treatment, they must decide on the spot, if a patient can maintain their teeth ongoing. The chap I work with (I am an Oral Surgeon so I take teeth out to his prescription) has a dilemma every time. Will this patient up their game and put in the work to look after their teeth post-radio, in which case lets keep most/all, or will it be too much for them, or are they not motivated to look after dentition, in which case more teeth must go. The lack of saliva puts us at high risk of decay and gum problems life-long and the decision to keep teeth is made in an instant. He would admit he has got it wrong both ways.(Taken too many in a patient who upped their game on the brushing front, and taken too few in someone in whom everything decayed in the weeks and months after treatment). So its important for patients to be really well-informed on the high priority we need to give our teeth for the rest of our lives - far more than if we hadn’t had radiotherapy.
1 am aware of 2 patients in my unit in the last 6 months, who having had the worst teeth out prior to radio, went on to get decay in EVERY tooth in their heads. 1 in 6 months, 1 over a 2 year period. So we need to be vigilant. A lack of saliva is no friend to our teeth. (I border on the obsessive, but is that surprising?!)
Thanks for sharing your experience - I hope others will question any extractions if not sure of the reasons why needed, but also see that you have absolutely understood the risks and are responding to them.
Good luck with the brushing, flossing, interdental brushes, duraphat, check ups, hygienist appointments............! Its a considerable expense, isn’t it?
I'm sure there are many on here who have had their teeth removed prior to treatment and are glad of it ....... some of us have commented on the fact ( me included ) that for us we went against the grain or hospital dentition's advice, and so far all has been well.
In my case i had an independent inspecting after the hospital recommendation, at that point I was told my rear upper and lower molars were in exceptional condition, and because the hospital wanted to remove my teeth so close to my treatment starting I declined, I simply could not face the pain and trauma of extraction "and" the fact i would lose four perfectly good teeth.
As i must stress, the hospital dentist "recommended" this because of the nature of the targeted radiation at the back of my throat and neck, and at no time did they make me feel guilty or try to coerce me, but he did stated ..... "It is entirely your decision, I am not going to tie you down to the chair !.... but this is my recommendation"
I carefully weighed up the situation, read many reports on the "for and against" argument, both here in the UK and the USA, but in the end i decided it was not for me and i would shoulder the responsibility of that decision, whatever that may, or may not be ! ,,,,,, this will of course not be the choice for us all, and rightly so.
I am now two years this month from treatment ending, I still have all my teeth, I have experienced no problems or pain, aching etc: but i am also aware the radiation has weakened and inevitably damaged some aspects of my teeth and gums, it is possible that in the future i may experience the consequences of said treatment, but that is not something i can control or worry about, I never was much of a "what if" kind of person anyway.
If your Dentician or Consultant strongly recommends removal with no choice on medical conditions, or if your teeth are in fact diseased in any way, that is a completely different scenario altogether, and in that case you would of course be advised to take such advice, if on the other hand you are given the choice, then it is exactly that ....a choice ....in the end it must be left to the individual to make that decision, freely, and of their own will, no matter what we have decided to do in our own cases or written about on these blogs.
The very best to all of you as usual, be you starting, going through, or at the end of your treatment .
So here we are just about 12 months from when I started my radiation treatment and declined to have all of my back molars removed and I thought another update would assist those starting treatment and making this decision - because it is your decision.
None of my teeth have had any decay, probably due to regular (every 3 months) appliance of fluoride treatment to my teeth - which due to my cancer treatment I get free on the NHS at present, but only costs £14.00 in any event. Seeing the hygenist every 6 months. I am still also using the water pic and the Philips Sonicare toothbrush with the high flouride toothpaste I also now get on prescription. I clean my teeth after every meal, even when I am out with a very handy portable (with batteries) electric toothbrush I picked up from Boots.
I am still very glad that I chose not to have my teeth removed as I feel that being able to chew food had made for a faster recovery I feel.
There is (as stated in a previous post) still a bit of Trismus about my mouth/jaw, but I find that if I stretch my mouth to its fullest extent each day throughout the day it gets less and less. They did give me a little gadget to use, but I find that stretching my jaw myself gives me the best long term results and the issue is becoming less and less with each passing month.
Thanks for that TTIGGY, useful info. I had three lower molars removed so had to re-train my brain a bit on how to chew which was a bit of a bind but second nature now; I did have a plate made but by the time it was made and fitted I didn't really feel the need of it and I found it just got food stuck in it so it just sits in the bathroom now, really must throw it away.
I see the hygienist every three months and have water flosser, tepe brushes, electric toothbrush and duraphat 500 toothpaste and have had no problems in nearly six years now. Still get a bit of plaque but making virtually zero saliva overnight makes that inevitable, nobody has ever suggested the fluoride treatment though; I'll ask about that next time I go.
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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.
I've followed your posts about extractions. I'm so pleased that everything is going well for you.
I'm in the other boat. I had an OPG prior to treatment planning and was half expecting to have some extractions as my teeth are heavily restored owing to copious amounts of Franol syrup for childhood asthma. I had some bone loss around my wisdom teeth . The dentist at the hospital had a good poke around and said everything was fine. I had quite a bad time with radio mucositis and have been battling with periodontal disease around one wisdom tooth since 4 months post treatment. The tooth now has movement, my gum is permanently swollen and sore and I am facing an extraction next month from a jaw in the line of fire. Thankfully it's a maxillary tooth rather than a mandibular so the chances of ORN are much less.....nevertheless I am a bit pissed!!!!!
Bless you, I hope things get better for you after the operation. I don't blame you for being a little pissed.
I must admit, it is one of the things that I thought of, even if they took the molars they wanted, one of the other teeth could act up on that side and then I would still be faced with the issue of having a tooth removed and ORN.
Thinking good thoughts for you and hoping all goes well.
Hi Tiggy I had 6 weeks of radiation and I was left with 2 teeth only well I ended up needing those out because the radiation ruined them, however I came home after treatment and baked cookies I never got sick and 1 sore in my mouth
thanks for the kind words
I’m not overly worried. I will prep my mouth with chlorhexidine and antibiotics and hope for a good outcome
I think we can be caught between the devil and the deep blue sea. I’ve read research that shows that if teeth are taken out before radiotherapy there is still a risk of ORN. There is a link between periodontal disease and mucositis. People with periodontal disease get worse mucositis and there may be a causal relationship the other way round Hellebore1 might know and give us some info when she looks in.
I only had the one extra top tooth taken out, little point in it remaining though as all the lower ones on that side were coming out with my jaw anyway, and there would have been nothing for it to bite down on.
I did have a thorough clean in the hospital a couple of days before my operation though
"duraphat 500 toothpaste"
I assume that's 5000?
My dentist prescribed duraphat 2800 to me, my teeth are probably the best they've been for years now, I've been signed off from my hospital dentist and my own dentist says there is little sign of any decay :-)
I have very little problem with lack of saliva apart from occasional dry mouth and throat, do you think that may be why you were prescribed the 5000?
I still (over 12 month since end of radio) can't open my mouth very wide, but was given a TheraBite to help with the stretching and the lack of being able to open any wider isn't really an inconvenience.
Great to hear that everything is going well for you, teeth-wise a year after treatment Tiggy - and for others too, mostly. You, Marcus Aurelius and others are so right to detail your careful tooth-care and regular visits to the Dentist & hygienist since radio. We stand the best chance of preventing decay, gum disease and osteoradionecrosis by meticulously looking after our teeth now. As emphasised earlier, we are now at high risk of decay due to our lack of saliva, and the risk is life-long.
As Beesuit has rightly stated, there is new information that there is an increased risk of osteoradionecrosis when teeth are extracted pre-radio. However, the reasons for extracting teeth prior to radio remain strong. As others have said, if you are recommended to have extractions it is worth asking for confirmation of the reasons why and how strongly the Restorative Dentist feels about the extractions in your particular case. I am very happy that I have had no problems since radio, but that doesn’t mean I won’t in the future and I know I need to be vigilant and scrupulous with my oral care. Teeth don’t decay because of direct damage from radiotherapy, but because of a lack of saliva. We have to make the effort to reduce the risks by consuming less sugar and cleaning really well.
Sorry to hear you need an extraction Beesuit - but sounds like you are doing all the right preparations - as I would expect you too! A loose upper molar should heal no problem....fingers crossed.
Happy New Year to you all!
I enjoyed reading your blog as l am due to have same kind of operation on Monday, 6th January. Not many on here have had jaw reconstruction so l am glad you wrote it.
Thanks, I must try and get it up to date now I know someone is reading it
The jaw reconstruction was amazingly trouble free (even though I had complications)
Couldn't believe just how pain free I was when I woke up from the operation, hardest part about it was the 1st night after the operation with all the machines and alarms beeping all night, once you realise alarms going off and machines beeping isn't anything to worry about, it's a doddle.
Good luck for next Monday
I do hope you finish it Penrod. I was quite upset when it came to s sudden end. In fact wondering what had happened to you so when you get time an ending would be good.
I am in so much pain now and my MacMillan nurse told me a lot of people say they are pain free after the operation.
I think blogs are very important and help people to understand what they can expect and that others are striding forward after their treatment, gives us something to aim for I think, so I really hope you do carry on.
Apologies for the delay - tripped over the cat and hurt my back - cancer didn't get me but Merlin the British Blue may!
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