Osteoradialnecrosis ( bone death after radiotherapy )

Sorry to hear that Sue, not experienced it myself, was warned of the possibility but I got the impression it was potentially something that might happen long term; you're very unfortunate to have got it so quickly.

Hello again Mike !

Yes and my dentist said that if the people who made my dentures had been more careful then it might neverr have happened. The dentures should have been ' special 'ones apparently, made to protect the gums after RT. Anyway we'll see what happens next. I think it is just a question of unfortunate circumstances. Its the only way to look at it. Don't think its a terminal condition so that's a plus ! 

Hope you are keeping okay ?

Best wishes

Sue

Hello modasue, i have heard of it but thankfully never had any experience of it , i might have done but my lower jaw was replaced from a bone from my leg so it was now radio free . Like me i have no bottom teeth left although they fitted implants so dentures could be made to clip over the top of them , unfortunately the body rejected the implants after 18 months so im still without bottom teeth,dentures . I know its not the same as what you are going through but just though i would share it with you . All the best ,take care .

                                                                                      Chris .x

Thanks for the reply Chris. I'm off for the CY scan this morning so will reply properly later today. You sound as if you've had it really tough !

All the best for now

Hi Sue

Hope your scan goes well today.

I don't have any experience of osteoradionecrosis either but there people on this forum who have so if you enter osteoradionecrosis in the search you'll be able to read their posts.

Wishing you all the best.

Linda

Thanks Linda. The CT scan wasn't nearly as bad as I had built myself up to think. My memory from pre cancer diagnosis and all the scans then, have left their mark ! Anyway thank you again and I will search against osteo necrosis .

Best wishes

Sue X

Hi Sue,

Really sorry to hear about your osteoradionecrosis(ORN) as if you (we) don’t have enough issues with eating post-radio/chemo without this. It must be very frustrating to have to rely on mushy food only. I haven’t had ORN myself (I had chemoradio for SCC tonsil and lymph node 2017)but I know a little about it as I work in a Maxillfacial dept where we see patients suffering with it occasionally. I’m sure you have gathered that ORN is caused by the radiotherapy severely damaging the blood supply to the jaw, usually lower jaw.Then when some damage occurs(or often just spontaneously)the jawbone doesn’t have the capability to heal itself efficiently, and the tissues can break down over the bone, allowing bacteria in, infection follows and the body can’t Resolve it as blood supply not good enough...etcetc.

I believe it occurs in about 4-5% of H&N radiotherapy patients, so not that common. Although we associate it with having a tooth removed after radio treatment, the vast majority (80%)of ORN occurs spontaneously - no tooth extraction or denture rubbing the area. ORN is treatable, but it often takes ages to completely resolve, as you’re dealing with an area of reduced healing ability (jawbone with less blood supply) and sometimes a body of reduced healing ability post-chemo. There isn’t a quick fix unfortunately, but several things will be, or may have been tried. I don;t want to second guess what treatment you’ll be offered as every case is different. Ultimately your team (often a Maxillfacial Surgeon) will be aiming to get the bone to heal completely and then, with luck get their colleagues in Restorative Dentistry to see about giving you some decent teeth to eat with in the future. There usually isn’t a great rush for treatment as this is a slowly moving condition and not life-threatening. But my goodness I bet it is severely affecting your quality of life - for which I am very sorry. Sometimes ORN just gets better without much interference, hence “a watching brief” - if yours is going to slowly improve on its own, you don’t want some surgeon getting too enthusiastic and operating too soon. 

While you’re waiting to be seen keep your mouth really clean and contact your Head & Neck/Macmillan nurse if anything suddenly changes or gets worse. I wish you the best of luck.

Hilary

So Hilary...its been 18 months since you wrote back to my post. I apologise profoundly for the delay but to be honest I'd had enough and just wanted to disappear for a while. What with Covid shielding etc when I got the e-mail from McMillan about the blog, i logged on and caught up with all those old notifications and messages ! Thank you for your sympathetic and informative reply. 

I am delighted to say that the ORN has finally settled down and whilst still without bottom teeth, I decided about 6 months ago to try and be braver and have been eating a far more varied ( and lumpier) diet. Teak is obviously out of the question but i'll have a go at just about everything else just so long as i have a litre of drinking water by my side for gulping trapped stuff down. 

So there is improvement and whilst I believe it could possibly come back if I damage my gums badly, things are on the mend. I have large craters where bone worked to the surface but my gums have healed over a bit and I am optimistic that they will get more resilient. Thank you for your kind words.

Take care out there

Sue XXXX

Hi Sue. Thanks for the update - your post back in Jan 2019 was a plea for support/help in a very difficult and life-affecting situation.Miserable and worrying. 18 months later the whole tone of your post is good news and is positive about the future. Brilliant - thanks so much for updating.

Out of interest, what treatment did you have for the ORN? - any surgery (debridement), drugs other than antibiotics, or just keep it clean and give the body a chance to heal it?

Do pester about getting new teeth - whoever you see/ speak to - Maxfax, ENT, Oncology - make sure they know how the difficulty eating is affecting your quality of life - and make sure you are referred to a restorative Dentist to have teeth made. This is a requirement for Head & Neck Cancer patients, but can be very difficult to access if you don’t have a local Specialist. Lay it on thick - your deserve a decent set of dentures to help with eating, but you may have to be persistent -  been through enough already.

So good that you are challenging yourself on the eating front - I always thought steak was overrated! You’re right to give everything a go - time changes and heals. I didn’t bother with sponge cake or sandwiches a year ago, but now I find I can get them down with a good coffee to help. I used to wistfully look at a rare biscuit and then look away (too too dry) ...but discovered dunking only 6 month ago!! Everything is possible 

So thanks for your positive post Sue. Onwards and upwards, you are an inspiration to us all

Hilary

Hi, me again !

Well my experience with the Maxfac consultant was so disappointing that I actually went to see a specialist privately - a wonderful  NHS consultant  working at St Thomas's London who also has a private practice too. My own ENT consultant was the best ever but sadly the Maxfac chap was not ( with me anyway )

The specialist I saw, said that it would take 2 years to assess the progression of the ONR but in the meantime  I should  keep the area very very clean ( salt rinses etc ).  My own dentist at home was marvellous too but doubted whether I'd ever be able to have dentures so i stopped thinking about it. i did actually get dentures made by a team of Restorative Dentists at the Birmingham Dental hospital but they were always ill fitting, despite many visits, I never saw the same person and it was a hopeless cause. 

It was actually wearing the dentures for an extended period of time one evening ( 4 hours ) that triggered the severe gum reaction which resulted in the subsequent ORN, which is why my dentist says best not to try again. I tried them a month or so back but they still rubbed my gum so I stopped immediately.

Yes the eating experience is an onward and upward ( or should that be downward as in swallowing ) journey indeed.  My saliva disappeared for a couple of years but has since returned to about 80% of normal but my taste and smell is still mainly absent though I have the odd tantalising smell experience which brings much joy. 

I was a very adventurous cook for years before the 'C' event so that aspect of my life was much curtailed at first as I found it impossible to season anything correctly whether it was salt or sugar,spice or flavouring. Basically I lost all confidence. Then after about 2 years I decided to relax back and go on instinct, using my years of experience to judge. And it worked.  I still lose all taste after the first mouthful but am optimistic that the more I keep trying lots of different things, the more likely it might return. 

I was the most dismal of ' Dismal Jimmys' for several years after my treatment ended and I was quite an angry person who refused to accept that much overused phrase ' the New Normal ' 

The advice I would give ( if asked ) is ' Never give up hope. Be patient and keep trying.' But the main thing is  Never give up hope !

Keep on enjoying the joys of dunking, Hilary. As a Geordie we have a dunking gene :)  An elderly friend of mine quipped once that a piece of cake ( or sandwich ) is too dry without a cup of tea in your hand !!!!

Take care and thanks again for writing

Love and good wishes

Sue XXXX