Hi,
7 years on from my cancer and I have just been told that I have osteoradionecrosis which requires surgery to remove the dead/infected bone and reconstruct. It started with pain in my jaw, and developed into what everyone thought was an abscess. A month on antibiotics made no difference at all. Excrutiating pain - worse than when I was diagnosed with cancer. I had all teeth removed from the left side ( site of cancer and radiation) two weeks ago, but jaw still infected and oozing continually. I am now waiting for a CT scan to see the extent of the damage , and see my consultant again on 4 January 2011. I feel that I need to know exactly what is nvolved and what the potential outcomes are. Of course I was in shock when I was told so didn't ask much - and wondered if anyone here has had to deal with a similar situation? Would you be willing to discuss with me what happens - even if it is awful? Any help, information or advice would be very much appreciated.

Hi Debbie.

It's Steve Ostrowski. I have been a member on this forum for years now. As soon as I saw Debbie T from Hampshire I knew it was you.

I have just put up a large post under 'Update on my life' in the Survivor Stories forum.
Catch up with you soon anyway. Let me know how the Scan results turned out

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

Don't be scared it is a huge operation, have faith in your medical team, it will improve your quality of life. Its very daunting and i would'nt lie if i said it did'nt hurt, but its worth it in the end. Don.t be afraid of asking as many questions as you can think of to your medical team. I had my operation in August 2010 and my pain is at its lowest in 23 years. Every case is different, but help is out there. The way i dealt with it was i have a very supportive family around me, and i had no other choice. It has made such a difference to me for the better. Don't look at pictures on the internet, it will only make you feel worse. Be strong and stay positive. I was told i would be in hospital for about 5 weeks, i was out in under 2.

Thanks to Steve and DBilly...just had my scan results and it is ORN as suspected. Thankfully I was well prepared for what was coming as I had contacted Steve previously, so knew all of the gory details! I find that I prefer to know what is ahead of me. So, I need reconstructive surgery of the left mandible with a fibular flap. Looks like it will be in March sometime. In the meantime I am in a lot of pain and am not getting much sleep. Add to that the eating mushy food again (which I thought was in the past) and I am a bit fed up. Never mind. As my consultant explained - the reason that more people are developing ORN is because the treatment for the original cancer was so successful that they are living longer. I am not relishing having to go through more major surgery, but don't have an option so no point in dwelling on it. Thanks for the support. Will keep you posted.

Hi again. Thought it was time to update everyone on what has happened, just in case there is another person out there who is facing this. I had suregery to remove my left mandible and reconstruct with a fibula free flap from my right leg. Had it on 28 Feb 2011. The operation took 15 hours, longer than anticipated. I woke to be told that all had gone well, but there was a small area of irradiated skin under my chin that the Consultants were worried about.

Had a 10 day stay in hospital which was an absolute nightmare, for many reasons not connected with ORN, just poor care. Had a traecheotomy again, and was fed with a ngt (nasal gastric tube). Pain very bad, and required a cocktail of drugs, some of which I can't even remember. Anyway, got through all of that and came home to slowly recover, and to learn how to eat, walk and talk again.

Went for a routine follow-up appointment a week later, only to be told that the small are of irradiated skin under my chin was now a huge concern, and could compromise that plate that had been put into my jaw.They told me I needed another operation urgently. This is the point where I considered how to take control, and yes, it was so bad I considered suicide as an option. Only for having the support of my husband, 2 boys and Mum, I wouldn't be here now. I asked why didn't they remove that skin in the original operation and was told it was a judgement call that they had got wrong.

So, 24 March 2011 yet another operation, this time to do a radial forearm flap, to use the flap from my right wrist to replace the irradiated skin under my chin. But, the flap failed, veins were taken from various places to try and fix it,and I was in and out of surgery for 7 days. Thank God that I was sedated the whole time and din't know anything about it. The flap just would not take, so in the end they did a deltoid pectoral flap as a 'lifeboat measure'. I woke up, having lost a week of my life, to find that my chin was sewn to what I can only describe as a 'trunk' of tissue. I called it my elephants trunk - it was hideous. They had partly removed an area of skin from the top of my left breast up to my shoulder, but left it attached at the base. This was then rotated and sewn to my chin, to cover the problem area of irradiated skin that was the problem.

I was attached like this for 5 weeks, time for the skin to graft to my chin. Then on 5 May 2011 they split the graft and put most of it back onto my chest area, where it was sewn back in place. A small area of skin, about 2 inches square, was left under my chin, so the flap that was returned to my shoulder was short. To cover this they had done split skin grafts from my right thigh, which is where they use an implement like a cheese slicer to take layers of skin off your body.These layers of skin were put into the small area of the wound on my shoulder. The thigh area where they had taken the split skin grafts was excrutiatingly painful - worse than any other pain I have ever had due to cancer or ORN, or childbirth!

I was very depressed and emotional when I woke from this surgery and found out what they had done. It seems that I have been mutilated as there are very few areas that are not scarred now. But the worst of all is my face. The 'paddle' of skin that they took from my leg during the fibula free flap was used to graft onto the side of my face. It is very ugly, of course grows hairs (why wouln't it, coming from your leg!),and has not healed properly. It is now August, and I have had months of dealing with a hole in the side of my cheek, caused by a fistula. This hole closes over, then opens again, and when open it leaks food and drink - therefore I don't go out other than to go for medical appointments.I have also developed severe shoulder pain. This is in both shoulders, though worse in my left. I am told that this is due to the scarring from the neck dissections (which I have had twice on both sides)affecting the nerves. I am now on Fentanyl patches of 50mg, plus Amitiptiline at night, which seems to help with the pain, though it has taken months of trial and error with various mediactions before we found something that helped.

Add to that my hair was falling out for 7 weeks, to the point where I thought I would end up bald - but then it finally stopped. They tell me that this is due to the trauma of the surgery on my body.

So, here I am, feeling like I have been through a major trauma, which I suppose I have. I am very depressed, so on medication for that. I am in severe pain, so am on medication for that.

I am now about to have yet more surgery to 'core' out the fistula. I am told that this means that it is removed rather like an apple core is removed. They will then cover the hole that is left with skin grafts from inside and outside my mouth. I need to be fed by an NGT for 10 days again. I am not looking forward to it, but then who would be. I just want it to be over and finished.

If I had known at the start that having Radiotherpay could cause all of this then would I have had it? Probably yes, because I wanted to stay alive way back in 2003...but it wasn't mentioned as a possible side effect at all.

I do feel that this condition should be talked about much more, not mentioned as a slight possibility that is unlikely to happen. Apparently it is becoming more prevalent now.

So, the cancer treatments are saving lives, but in the process those treatments are causing much more debilitating conditions that people like me have to try and live with. I am not sure which is worse - Cancer or ORN.

Certainly my treatment for ORN has not run smoothly and has resulted in many complications. But I am still alive. Every day when I wake up I now have to deal with the fallout from having the surgeries.

My whole life has changed - everything.

I am unable to eat without my food dribbling down my chin because my facial nerve has been cut, so I don't feel it. I don't eat with my family as I feel it is embarrasing for me, and offputting for them. Also no social life, as eating and drinking is an intergral part of that.

Of course having had most of my lower teeth removed just adds to the difficulties of eating and talking.

I am unable to do any basic household chores because of the pain in my shoulders - so the burden for this falls to my husband.

I am wondering when/if this will ever end. In my head I know that the answer is no. This is something that I have to live with.

The surgeries themselves are things that you get through, you cope with and move on from, difficult as they are at the time. But the day to day, living with such disfigurements and conditions, is almost too much to bear.

I understand that a national review of Oral Cancer Treatments is currently being carried out. One of the things that is being considered is the level of radiotherapy given to oral cancer patients.

I do hope that future oral cancer sufferers do not have to go through what I have gone through.

Hello Debbie

Thank you for telling us your story. You have had one thing going wrong after another. The complications from ORN can be horrendous and you now are the unfortunate expert, poor you.

Sometimes it can all feel so useless and depressing and it is understandable. Do try an remain positive despite all. Seek counselling if you haven't been given it. It helps with coping. It is good that you have the family support you have. The family will want to treat you as part of them and you must let them and not isolate yourself. If they stretch out their hand, take it. Lots of adjustments and a new way of doing things will be needed for the new Debbie. A happy Debbie.

If you need to talk, we are here.

Best wishes

Vinod

This surgery sounds very scary. I've just been told I need to have a crown for a broken tooth. I wondered if anybody had any good advice for preventing dental caries and possible future problems like poor Debbie's. I've heard of dental trays, but my dentist hasn't heard of them.

What does everybody do to keep their teeth healthy?

BTW my name is Chris and I'm just approaching 4 years from diagnosis.

Hi, I see my dentist once a month for a check up. I have flouride coating on teeth. Every night i wear top and bottom trays full of flouride. I also use Duraphat 5000 toothpaste (from docs on prescription)Floss daily and chew gum!
Phew!
Anne

Hello Suedebottom

See my advice on Oral Care and Radiation Therapy.

You will also find Special Care Instructions for Radiation Patients useful for information on the trays.

Best wishes
Vinod

Hi Vinod,

Thank you for your kind reply. Yes I am having counselling, but find it is not helping much as I cannot yet 'move on', as I am still waiting for more surgery. I am being referred to a specialist unit in Salisbury thta helps people to deal with disfigurement. I think that might be more helpful as it is specific.

I find that I feel sad and depressed because suddenly I am not 'me', or not the 'me' that I have been for 51 years. I have always been a positive person, whatever the situation. Even when I had cancer, I was not at all worried as I expected everything to be fine. But now, now I am finding it very hard to be positive about anything. I think that I have run out of energy to be positive.....

At the moment my main problem is the shoulder pain. It is in both shoulders and prevents me from doing so many things that I would like to do.

Does anyone have this problem, or can anyone give me any advice as to what is causing this pain and how I can deal with it?

Any help or advice would be gratefully received.

Namaste,

Debbie

Hi Debbie, I am so grateful to have read your posts...I am a 35 year old mother of 3 beautiful children --1 1/2 yrs, 2 1/2 yrs and 15 yrs old. I am also a 1 year survivor of stage IV SCCHN. I completed my chemo and radiation at MD Anderson in Houston last August. I have recently been told that I have osteoradionecrosis of the maxilla and around the maxillary sinus. I am scheduled to have surgery next month to remove part of my maxilla (top pallate) and other areas that maintain dead bone. I am terrified. I have already had major surgery with regards to the cancer. I had a tissue flap from my back put into my cheek, some upper teeth and maxilla removed. Then the trach and feeding tube and several drain tubes after that surgery. My daughter was only 3 months old at the time too. I'm just not sure I want to go through all of this again. Did you ever try Hyperbaric oxygen therapy??? Was anything tried or suggested before your surgery? Would you do anything differently??? I am wanting to get a 2nd opiion but just not sure where to go.
How are you feeling these days? I am very thankful for your information. Take care and I wish you the best.

Hello Jennifer

Some surgeons think hyperbaric oxygen helps, others not. The evidence is not overwhelming. I would suggest that you ask your surgeon about the planned prosthodontic rehabilitation you will need arranged following the surgery. Make sure that the maxillofacial prosthodontist is involved from the start. It helps. There will be some disfigurement but this can be reduced if the facial tissue is supported with a prosthesis.

Best wishes
Vinod

Hi Debby,

So sorry to read about what you've gone through. It must have been harrowing. I lost my tongue to cancer in 2008 and right now coping with a PEG tube and slurring speech. But, otherwise, I'm ok.

You mentioned that you've lost your energy to be positive. However, your willingness to share with us your experience and what you are going through proves just the opposite. I believe that energy is still abundant in you without you realising. You've gone through a lot Debby and I don't think you should stop now. There's always hope in the future....I know its easier said than done but we don't have a choice, do we? The only choice for people like us is to face it head on...and we can do it..take one step at a time..

Hope to see more posts from you...Oh...and I'm sure your shoulder pain will go away. Perhaps a gentle shoulder massage or exercise would help.

Do take care...