I haven't been on this forum for a couple of years now so i'm long overdue for a visit and I thought i'd give an update on my own health since my last visit. Hi to all of you who remember me.

I was diagnosed with Tongue Carcinoma in 2003 and had to go through the hell of heavy Radiotherapy treatment and a peg for eight months and eventually got over all this by late 2005 and returned to work.

I had to have some teeth extracted along the way but late in 2008 I started to notice a lot of pain on the right side of my jaw which eventually turned into an open infection and wound which was eventually diagnosed as Osteoradionecrosis (disease and weakening of the jaw bone). While my consultant was considering various treatments including Hyperbaric oxygen treatment for this condition, my jaw broke which resulted in the need for surgery for jaw reconstruction (Fibula free flap). This was performed in April 2010 and I have just had the flap trimmed down in readiness for implants into the newly grafted bone. Also I had my bone and muscle snipped at the Temperomandibular joints as I was suffering from frequent jaw seizures as a result of the earlier Jaw reconstruction surgery. I am writing this with a very swollen mouth that feels like it's been packed out with a tennis ball.

Some of you will be familiar with this condition and the aforementioned surgical procedures. The point I would like to make here however is that Oncologists can be evasive when it comes to giving you information from the onset of your diagnosis of Oral Cancer that requires Radiotherapy. Radiotherapy in itself is very destructive and will restrict the blood flow to the bone and weaken the bone structure so when you reach your five year milestone and are declared Cancer free, Osteoradionecrosis is a possibility that could happen to you. I say this on the back of a lot of correspondence with other people in the same boat. In each case none of them had ever heard of Osteoradionecrosis before they were diagnosed with Oral Cancer. In my case I was told it was a bacterial infection and was given numerous prescriptions for Anti-Biotics before it got so unsightly and painful that I wrote to the Oncology department at my local hospital where I had been going for checks during my five year period before remission. I sent photos in as well. Eventually I was given the correct diagnosis.

My gripe with Oncologists is that they tend to play everything down on the initial diagnosis of Oral Cancer and are far from open about the possible conditions that can occur at a later date. Armed with enough knowledge I might have known what to expect when the early symptoms of Osteoradionecrosis first occurred. Instead, I went through months of pain and torment and it was a year and a half from the start of my "infection" until the time I was admitted for my jaw reconstruction during which time my jaw broke.

For some reason it would appear in most cases, Osteoradionecrosis usually starts to develop about five years or so after Radiotherapy. If you are still having your regular check-ups, or even if you have finished them, and you have any nagging doubts about your jaw movement or have any unexplained pain that has recently occurred or visible infections and tooth or gum problems then it's worth asking for a CT scan to check the condition of the areas of your jaw that were treated with Radiotherapy. Maybe ask for one anyway a couple of years after Radiotherapy. This could show up up any cracks or weakness in your jaw, and if any visible damage is caught early enough then it may be possible to treat this with Hyperbaric Oxygen Treatment before the damage becomes too extensive.

I think awareness is priceless and personal experience is a valuable means of passing on any information that could be helpful to others. I'd like to hear the views of anyone who has had a similar experience.

Steve

Steve

Hi Steve
What a great post with such informative content. Thanks for passing your experience along ~ forewarned is forearmed (or whatever that saying is!).
Sorry you have been through all of this stuff and hope you're soon on the up and up and getting back to life.
Cheers
Deborah

great information!

I was treated for a tumour on the tongue in 1988 and suffered a stroke in Jan 2009, this was caused by the radiotherapy. I also had osteoradionercrosis and have had my bottom left jaw replaced with a piece of my hip. This was also done with a flap and was a complete sucess. Its not come anywhere near altering the disabilities the stroke caused, but my quality of life is much better, oh by the way i was 21 when diagnosed with cancer, 42 when i had the stroke and 43 when i had my jaw replaced, i've never smoked and don't drink.

It seems that more survivors are now being diagnosed with ORN. Like Steve, mine started with what was thought to be an abscess (it wasn't!). After many weeks on various antibiotics I visted my dentist, who immediately refered me back to my consultant. Several teeth were a bit loose, so all teeth in the original site of radiation were removed under general anaesthetic. Following this the wound has not healed, my jaw/face is still infected (with lots of pain) and the wounds are now 'open' between my tooth sockets and my neck. Nice party trick when food and drink spurts out of holes in your neck - but not
too attractive! Finally a CT scan has confirmed that I have ORN, and I await reconstructive surgery, which I am told is more involved than the original surgery for tongue cancer.

Like Steve, I wish that I had been told that ORN was a possibility following the radiotherapy. Not that I would have made any different decision at the time. In 2003 with two boys aged 5 and 9, my priority was to stay alive. If they had told me that between 5 and 7% of survivors develop ORN later on, then I still would have had the radiotherapy, BUT....at least when the pain and infection started I would have known what it was and got back to the hospital much quicker.

I don't think that GPs are aware of this condition at all, though dentists are. So, any problems, go to your dentist!

Thanks for sharing you experience which sound awful. I just wondered do you think dental hygiene makes a difference? My partner was really careful for about the first 18 months after RT cleaning his teeth about three times a day but he has got really slack recently. Washes his mouth out with mouth wash a few times a day and I think only brushes his teeth a couple of times and ages after eating.

I note that people on the US oral foundation site seem to be quite well informed about risks and possible late effects of RT. We have been told bugger all by the NHS and I agree that advice about how to mitigate late side effects or recognise them and seek medical attention seems a bit pathetic.

If you have suffered from osteoradionecrosis, please participate in this poll:
Osteoradinecrosis - Our Experience

Thanks, Vinod

Hi Steve, I dont suffer from osteoradionecrosis (yet ) but I agree that the consultants and medical teams are a bit 'tactical' when it comes to info.
If I knew the problems RT was going to give me I wouldn't have had it and would just have relied on the fact they took the bad bits out.
Hagg.

Hagg - you are such an inspiration to me and many other people who are unfortunate enough to have to visit this website! Do you truly regret having the rt, along with all it's side effects? I had the full whammy - 31 hours of surgery, 6 weeks of chemo and 35 doses or rt. All were pretty horrendous, but without them, I don't know if I would still be here. Surely all the side effects are better than the alternative? As a 12 year survivor, you are our inspiration! I'm just a 2 year survivor and I look after my 3 year old grandson who was just 10 months old when he came to see me in hospital - and I vowed then to see him grow up! Keep going Hagg - we need people like you!

Dian,

Amen, Sistah! Haag is my inspiration too. It just occurred to me that I'm now three years out (January, 2008). Yeah, me!

Mimi

I would never advise anyone not to have treatment if it is offered, but for me, I would have taken the chance. As Haze would tell you, I can be really stubborn and pig headed lol. Perhaps some of that is what helped me get through my own 'journey' though.

It's really nice to be seen as an inspiration so thank you. This forum and everyone on it are an inspiration. Whether it's months, years or decades. Whether you're a patient, carer or friend, we all have the same thing in common. WE ALL WANT TO KICK CANCERS ASS

Good morning from snowy,snowy, icy and more to come in Ct. U.S.A. Hagg, I can relate to you being stubborn and I got really mad because how dare Cancer come into my life. I didn't and still don't have time for that nonsence. I have enough things to deal with but I did get through 5 years as of Dec 27th 2010. As far as the peg goes..... I had mine for 2 years and 4 month. I absolutely hated it BUT it kept me alive and there were times that I almosty asked for it again but the energy kicked in and I fought it. It almost got to be like a game for awhile seeing how good I could eat. When I first started out I couldn't drink anything ,eat anything, one day I choked on a grain of rice.....an hour ago I ate a cup of rice with lots of butter. I used to choke on water, on air, pills etc. Now I just take it all slowly and small pieces. I had great beef stew yesterday. You really have to be patient. I wish at this point I could gain some weight back. I went from 154 lbs to 125. At the beginning of last year I gained 10lbs but during the year 12 people died that I knew and the weight came right off again. It's hasn't been a picnic and I do have LOTS of side effects but ya kinda of cope with what ya have.....it could always be worse. And Mimi.....you go girl.......and hi to Deborah 51 with all that heat in Australia.........hate the heat and hi to Julia who keeps things going.

Joan P.

Well done Joan. I had a real bad time with the mental side for about 2 years but luckily had the best girl in the world to help me through it. I am stubborn though and even at my lowest I knew that I would get out the other side which is where the 'I kicked it's ass' attitude comes from, I really did in the end .
Hagg.

Keep on kicking it Hagg. Listening to you gives us all hope that there is light at the end of the tunnel.
And Mimi - in the UK, we are actually considered cured after 3 years, and the following 2 years checks are just a formality. So, congratulations on 3 years - you are officially cured! All us survivors must give so much hope to all those poor individuals who are just starting off on this unknown journey. It's just so important to know you're not alone. I didn't find this website until after I'd had all my ops and treatment, but I really think it would have been a big help if I'd had people like you and Hagg to talk to when it was all going on. I still think though, that positive thinking and sense of humour is so important to get us through.
Hope all is well with you still and much love and respect to all.
Dian xxx

Unfortunately I didn't find the forum until well after all my treatment had finished. I wish I had found it much earlier, it would have probably made my journey a bit easier as I had so many questions and got very few decent answers.
I raise my glass to all of the people on this forum, you're the best.
Hagg.