I have not been on the site for several montha, mainly because I am feeling pretty good. I am 3 years on from finishing treatment on May 19th 2005
When I first came on the site feeling very ropey after chemo and radiotherapy for cancer of the base of the tongue I used to be envious and cynical reading the reports from people who said they were feeling great after so many years, maybe I have been lucky but IT IS TRUE!! you do get better so hang on in there. I can now go most places and find something to eat that doesn't choke me and fills me up, some foods/alcohol still taste funny/different but you get used to it.
What I really wanted to suggest was that most consultants do not go on enough about the care of your teeth after these procedures and I think this really should be punched home more aggressively than currently.
I have always looked after my teeth, flossing every day etc but this is so much more important now with decay attacking strange areas of the teeth (right on the biting edge)etc etc.
My dentist has now put me on a very high fluoride dosage of toothpaste with a fluorigard rinse and no rinsing my mouth after brushing and I now realise all this is essential if I am to keep the remainder of my teeth, so please take note as I don't think this message is put across as forcefully as it should be. Beside which it saves money as last year I had to pay £1300.00 for work on my teeth!!
I have now managed to persuade Bristol Dental Hospital to look after me as part of the ongoing cancer treatment aftercare for nothing which is what I wish I had thought of a lot earlier... Love to everybody
John

Hi John,
I'm new to this site and having read your post am so glad I've discovered it! I too have had chemo and radiotherapy for cancer of the base of my tongue, plus surgery for a secondary in the lymph nodes. My radiotherapy finished last October and the surgery took place in December.

I'm still struggling to eat - I don't have a sore mouth or trouble swallowing, but everything tastes so revolting that I have no interest in food whatsoever; I just eat occasionally because I know I have to. I've lost 20kg since last July, and I wasn't overweight then! It's so good to know that it DOES get better and I'll learn to live with it.

I agree with you about caring for teeth - the horror stories I've heard about horrendous tooth decay fill me with dread - and determination that I'll do all I can to prevent it! I guess I was lucky as I was given the high fluoride dosage tooth gel when I had 4 molars extracted, prior to my treatment starting; I had to use it twice a day throughout the radiotherapy and once a day after that, for the rest of my life - or as long as I have my own teeth! My dentist and hygienist, at the Royal Marsden, are pleased with the condition of my teeth...what a difference good news makes!

Thank you for your positive comments regarding eating - it's really cheered me up as I'm going through a bit of a 'blip' at the moment, trying to come to terms with all that's happened - this time last year I didn't even know I had cancer!
Feefs

Hi John, I suppose I could class my self as a veteran now , it's been nearly 11 years. I like to tell other sufferers to give them hope too.
I think the toothcare issue is very important, I go to the dentist every 8-12 weeks so he can keep an eye on things. I was going to the hospital for checks but stopped going there a couple years ago as part of my mental recovery ("I dont need the hospital at all now" attitude). Hagg.

Hi guys, Teeth omg bane of my life right now, I get absyeses at least one a month.
My teeth are all rotting and nothing can be done ans my Consultant will not take the risk in taking them out.
Its a nightmare and my own Dentist will not even look after me now hes too scared to

Paul

Hi everyone!

Before I got my flap it had been an embarrassingly long time since I'd gone to the dentist, and I probably would have continued not going if one of the residents hadn't bullied me into it (piss-poor oral health was probably the main reason I developed cancer in the first place). My main reasons for not going were fear of the outcome (I just KNEW I'd need a 32-piece dinner set with two plates) and the expense (even though my current employer provides very good dental coverage). I finally started going to a dentist last October. To my great surprise, I needed 3 extractions (physical distress!) and to have a root canal redone (fiscal distress). No, it wasn't exactly a walk in the park, but I got to keep my most of my teeth, and my pearly whites very nearly are.

I used to joke that, because I had a form of cancer that stereotypically hits men more often women, some guy would get my breast cancer. One of my dentists (a gentleman) IS a breast cancer survivor--can't use that one anymore. I was annoyed by something that the extractionist did when he pulled the last tooth: he gave Flappy a haircut. Apparently he doesn't like the fact that I have hair from my arm growing very well on my tongue. He actually thought I had "hairy tongue."

Julia

on saturday i am having 2 teeth taken out by professor brennan at the queen alexandra hospital due to damage caused by rt,they told me that they will be very careful as damage to the gums can happen.i have always looked after my teeth but the last few months i have been a bit neglectful due to the soreness of my mouth.dont like having teeth out but then who does.still got to be done. love shirl xxx

Hi John,Feefs,Hagg and Paul - my two good friends,Julia and Shirl - my two lovely ladies,

I have been hearing these stories about teeth over and over again and I still have not understood how this whole thing works - affecting some people and not others(me for example). I really feel bad for those with these problems and one I really feel for is Paul - but what I like about Paul is his acceptance of the entire situation.
I have no figured out how come my teeth were not affected in anyway and neither did I ever have a problem with my saliva. I can still open a coke bottle with my teeth - and thats not for bragging - but to pose a question as to why it happens to some people and not others.
Any pausible answers?

Lots of love and hugs to all. Julia and Shirl - some kisses too.
Ananth

Hello

Here is some advice on precautions to take before starting and after radiation therapy for a mouth cancer in which the parotid glands and side of jaw and neck get 'blasted'.

There are two issues here: 1) the need to improve the mineralisation of the teeth before oral hygiene gets difficult owing to an uncomfortable mouth and 2) the need to compensate for risk of 'tooth-decay' that arises from decreased salivary gland function (as a consequence of surgery or radiotherapy). The danger is 'radiation' caries caused by changes in the quantity (reduced) and quality (less buffering ability) of your saliva.

I advise patients with a dry mouth to keep (as following radiotherapy) a very high standard of oral hygiene. I advise my patients to brush four times daily and to follow that with using a fluoride mouthrinse to prevent tooth demineralization . The message is that a low fluoride (from the toothpaste and mouthrinse) application several times daily to the teeth is more effective than a high concentration used once at night. After this, twice daily supplement the normal brushing with additional brushing using using interspace and interdental brushes. Use the interdental brushes to clean areas normally missed by the regular toothbrush. Use the interspace single-tufted brush to clean the entire gum-line of the teeth twice a day. The single tufted brush should be applied along the gum-line and moved back and forth while following the scalloped outline of the gum into the interproximal embrasures. Download to see how: videoclip. After brushing the teeth, use a fluoride mouth rinse for 1 minute ( Fluorigard mouth rinse). Additionally at night, before bed, do a 5-minute scrub of the teeth with a Fluoride gel(e.g. Colgate's Fluorigard GelKam) or high fluoride toothpaste (e.g. Duraphat 5000 ) and then spit out any excess gel. Do not rinse out in order to leave the teeth lightly coated overnight.

An alternative way of applying the gel at night is to use a thin custom gel-applicator trays, similar to that used for whitening teeth, to carry the fluoride gel over the teeth. The trays should cover all tooth structures without irritating the gingival or mucosal tissues. The trays should be placed on the teeth and left in place for 5 minutes. If gel oozes out of the tray, you are using too much. After 5 minutes, remove the trays and spit out any excess gel. Patients should start using fluoride mouthrinse and gels several days before radiation therapy begins. I advise the use of thin custom gel-applicator trays, similar to that used for whitening teeth, with the advice to smear the inside of it with the fluoride gel. The trays should cover all tooth structures without irritating the gingival or mucosal tissues. The advice is to start with a daily 5-minute application of a 1.1% neutral pH sodium fluoride gel or a 0.4% stannous fluoride (unflavored) gel. Patients with porcelain crowns or resin or glass ionomer restorations should use the neutral pH fluoride. We use Colgate's Gel Kam which is 0.63% stannous fluoride, but there are other brands.

The trays should be placed on the teeth and left in place for 5 minutes. If gel oozes out of the tray, you are using too much. After 5 minutes, remove the trays and spit out any excess gel. Do not rinse. Do not eat or drink for 30 minutes , preferably one should to go to bed!

For the above, any 1.1% neutral pH sodium fluoride gel or a 0.4% stannous fluoride (unflavored) gel can be used. Patients with porcelain crowns or resin or glass ionomer restorations should use the neutral pH fluoride.

A new product that may help remineralise the teeth is GC Tooth Mousse. See page 13 of this brochure.

GC Tooth Mousse is a topical, water based, sugar free creme that contains Casein Phosphopeptide – Amorphous Calcium Phosphate under the brand name of Recaldent. It helps remineralise teeth and is supposed to help with 'radiation caries'. Tooth Mousse can be applied at any time during the day or night. After cleaning teeth in the normal way, remove excess saliva from the mouth (via spitting, swallowing, or patting teeth dry with tissue) and apply the creme using a clean finger or cotton tip. It should be left undisturbed for three minutes for day application then spread around mouth with tongue and held for another two minutes before being spat out. Avoid food or drink for 30 minutes. Tooth Mousse can also be applied just before going to bed and the entire application can be left to slowly dissolve overnight. It isn't sold in pharmacies so try this online shop.

The water-pik is useful in washing out food debris, but it won't shift plaque. Brushes used properly are still the best.

Patients should start using fluoride mouthrinses and fluoride gels several days before radiation therapy begins. Unfortunately, patients with radiation-induced salivary gland dysfunction must continue these daily fluoride applications for life. There is some good advice at the links given on the PROFESSIONALS > COMPLICATIONS page


Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Why aren't we given this advice at the hospital? I know I wasn't.