My husband is a 12 year cancer survivor. He went through oral cancer treatments in 2007 and had stage 4 SCC. I'm kind of an over-planner and knew going into this relationship that osteoradionecrosis was a possibility and that eventually it could mean total jaw replacement. We're not there yet. We're in this awful stage for the last several years of tooth decay/loss. Initially, we went for a denture consult, and that doctor wouldn't touch him. Husband said this is typical, doctors don't want to mess with cancer patients because of the risk, he did give us several oral surgeons to investigate, and none of them really panned out.

A couple years ago we went for a consultation at Orlando Health. The doctor there basically said there was nothing she could do that was covered by our insurance and that dentures were his only option. Even the thought of having to get dentures makes his anxiety go through the roof, he wants to believe implants are possible, but ORN has already started affecting his jaw. Later that same year he received a referral to Shands of UF, and the doctors there were wonderful, they said they could help and we just needed his records sent over. Requested them from Moffitt, sent over, no problems there, except the radiation mapping was completely missing. Surgeons at Shands said without the radiation mapping treatment was too risky. Now I didn't go to this consultation, but in my mind we're on a lifelong journey where eventually we may see total jaw replacement, so I'm not sure what too risky means? I'm also, once again reaching out to Moffitt, hoping maybe there's some place they didn't look for the radiation mapping, because I just can't imagine a situation where you keep the patient records in archives but just not that?

So that's where we are. What I know is that there's mixed information on dental treatment, statistically speaking implants are not impossible, but logistically finding someone who will do it is another story. There's a dentist in Bradenton who advocates for dental care for oral cancer patients, I feel like we're past the dental care stage, so we need to be looking at surgeons who know how to deal with ORN. We've theoretically found surgeons, but not without the radiation mapping. Is there anything I'm overlooking?

Gill, I would like to speak with you and learn/share what you find out. I too, am looking at significant dental problems and failures. My dentist seems to be at his limits. I have teeth he wanted to yank but I held off for fear of ORN. There are more teeth in trouble going forward.

I'm willing to travel if necessary if there is talent and experience to be found.

We have seen lots of patients over the years with ORN here, I am one of them. There are two approaches depending on when you become aware of it. First I would just like to make clear that ORN is visible in common X-rays, panoramic ones taken at an oral surgeons office or the small PA’s taken at a dental office. It is unmistakable and obvious to anyone who knows what they are looking at, but not always to general dentists that see it but often think it is bone loss around teeth from periodontal disease. It can initially appear small but progresses as the bone, damaged by radiation and losing its micro vascularization begins to die and become necrotic.it happens mostly in the mandible, less so in the maxilla.

In its very early discovery stages in some people there is an opportunity to halt it even reverse it. But not in all cases. This is very dependent on individual biology and the number of gy’s of radiation the patent was exposed to, and the field if radiation. People radiated even in the early days of IMRT radiation did not have great mapping of the fields. When the technology was newly introduced, it was many years before ROs started using it to its full advantage. The reason for this was in order to fully utilize its capabilities, you had to know head and neck anatomy the way a surgeon knows it which is far beyond radiation oncologists training. Radiation oncology took many years to get up to speed.

The things which can be tried to reverse or slow down the process are the use of pentoxifyline combined with vitamin E. You can Google search this, and there are numerous peer reviewed articles from around the world showing varying degree of success. I tried this unsuccessfully, but the caveats are that I went through treatment back when XMRT poorly targeted radiation was the standard of care and had 72 by of radiation, far more than is given today. Others that have tried this have in early stages of ORN reversed the bone loss. The mechanism of action is an increase in micro capillaries in the bone. Pentoxifyline is a vasodilator and contributes to increased angiogenesis systemically, not just in the bone. There are few side effects from using it, some people report lightheadedness from the vasodilation and drops in blood pressure. Working on modifying dosage which is usually about 400 mg twice a day mitigate this issue.

An expensive and not always successful, and not always insurance covered idea is hyperbaric oxygen treatments. Not alway impactful in treating ORN and the literature is mixed. I have seen this work to reverse ORN in people that went through the process with me. They had smaller areas that in radiographs and you could see it disappear in subsequent images over about 35 dives. Again my experience was not successful likely for the reasons previously stated.

I ultimately had a fibula free flap 10 hour surgery to replace the left side of my mandible last summer at Johns Hopkins. Any one that wants to know about it and the potential benefits and negative outcomes compared, I would be happy to explain my experience to you. Even for its reputation, I would choose a different institution to have this done at if I could go back in time.

I hope this is somewhat helpful. From any perspective this is a crappy place to end up. But there are several hundred fib free flaps done a year in the US with really good outcomes.

I have a background as a Founder and CEO of a FDA regulated class three medical device company that designed and fabricated dental implants, and have lectured and taught extensively about them. I designed FDA approved implantable devices and the components used to restore them. Their success rates in radiated bone are poor. Over twenty years of working w cancer patients on post treatment implant use I have seen far more expensive failures than successes. Again happy to elaborate if someone wishes to understand it all more fully. But I will stop here so this doesn’t turn into a book.

Thank you for your very informative post regarding tooth problems after treatment.
I learned a lot from your information.
My problem is tooth loss...which happened after strong doses of radiation, as my HPV related oral cancer was diagnosed as stage 4 then changed to stage 3...
After, and during treatment..l was devastated when my teeth literally started to loosen and drop out...
Sadly, I was not made aware that this could happen when high doses, combined with chemo could cause this ..?
Long story short...I ended up with my full lower set of teeth gone, but still had some roots left in there...
I was cautioned that it was not recommended that l have dental surgery to have the roots removed..
Dangerous even. ??
However..to be fitted for a lower denture ( implants were not an option)..l would need to have the roots removed...isn't that what they call a Catch22)?
Does anyone know if it is really dangerous to have surgery after cancer treatments.?
Any advice, suggestions would be appreciated.

I’m sorry to say but I’m 18 years out from initial diagnosis. I used to have beautiful teeth. I recall meeting my radiation oncologist for the first time. He said,”You have such beautiful teeth.” Then I learned from another cancer patient that she lost all her teeth. I knew then that was to be my fate. Unfortunately it happens and the teeth decay, as did mine. I went through hyperbaric oxygen treatments and had them all removed. They were chipping and falling apart. It was horrible but I did what I had to. It prevented Osteoradionecrosis, and for that I’m grateful. I don’t believe there is any way to prevent this. I do believe that the degeneration of the jaw can be prevented. There is hope. The face and jaw don’t need to fall apart.