Here's a topic I know a number of survivors have encountered - dental issues. I'm curious what happened to you, what your doctors recommended, what treatment you received, what type of doctor you saw, and how the treatment worked out. Also, anyone with long-term daily pain - what medication have you used?

I was first diagnosed with SCC of the lateral tongue in 6/2005 and had RT Feb-Apr 2006 (33 treatments).

The radiation was concentrated on my tongue and lower jaw (front and right side) and about a year after treatment my 4 lower front teeth started to loosen (the lateral and central incisors).

I went through 45 HBOT treatments in 2008 and another 30 treatments in 2013. The HBOT in 2008 was for non-healing ulcers plus the loose teeth, and the 2013 HBOT was because I was having the teeth removed.

On top of the loose teeth, my jaw (where radiated) has always been painful and the soft tissue in my oral cavity is also tender, painful and very sensitive to hot or spicy foods.

The pain level varies and usually isn't severe, but it is constant. I still take pain meds to help with the pain. My doctors feel the pain can be from nerve damage from the RT.

I've been to a number of dental specialists (prothodontist, periodontist, and oral surgeons) for a consultation and also treatment, and also my two ENTs that have treated me.

We briefly discussed implants, but most of the doctors felt that procedure was too risky for me. I do have ORN in that part of my jaw.

In 12/2012 I had my two central incisors removed, and in 5/2013 had the two lateral incisors removed. My oral surgeon who removed the teeth recommended I wait a few months for healing purposes before having the bridge (a 10 tooth bridge) installed, and I just started that process last week.

I have the same questions that you ask in the beginning of your post and hope that others will respond.

My husband is 5 yrs post tx. (starting out with healthy teeth) In that time he has had 3 root canals & is currently undergoing HBOT prior to wisdom tooth extraction due to bone loss. I am finding it frustrating that there is no team approach to monitor these issues. I am constantly worried about whether we are getting the best advice possible and angry at how inexact dentistry seems. Do the routine x-rays ever show anything before it's obvious that there is a problem?

I have had to stop obsessing about whether his wisdom teeth should have been removed prior to tx., but it did not help me to recently find out that in the Navy, wisdom teeth are routinely removed, even healthy ones.

I have made contact through the patient coordinator at Dana-Farber regarding a possible dental consult. However, we all need someone local. I have found a local experienced oral surgeon. But again, they do not follow routine matters.

This recent set back has brought forth other caregiver long term emotional issues for me. I will post about that separately.

Lottie

Susan, you mentioned you had ORN in part of your jaw. Have any of the doctors/dental professionals addressed this? If so what have they said? If not, it is something that should be discussed. I would hate to see you go thru all this with the bridge only to have bigger issues down the road. My understanding has been, when left alone ORN will continue to deteriorate the jaw.

Everyone with radiation to the mouth or even head and neck with xerostomia as a result will have many dental issues to manage for life. When back teeth are pulled it forces the chewing on teeth not designed for that. They end up moving as you chew and wear down at the gums (abfractions). The grooves keep getting deeper till the teeth break.

If the constant pain is in the teeth a toothpaste with potassium chloride such as Sensodyne can help. I never had trays and use Prevident with flouride and potassium. I was told that at 9 years my teeth were better than what they see with trays. All my teeth that weren't crowned wore down significantly during the 10th year.

And yes, nobody really follows this unless you do.

Ed

I was never a popular guy with the dentist anyway, with infrequent visits my whole life, but had fairly good teeth appearance wise, except for two extractions I had years ago, cavities occasionally. Anyway, I believe some mouth issues started with chemo treatment in 11/09, which resulted in hospilizatin for an extended period. Chemo caused the same side effects as radiation later did, but was worse, with the dry mouth, mucocitis, dysphagia, invasive candidiasis ( thrush in the blood system), Steven Johnson type Syndrome, burns in out/mouth, others, and as a result of my condition, in ICU, extended hospital, and nursing home stay, I had no proper oral care, and relied on nurses because I couldn't walk for 10 months, and for two months couldn't even drink water by mouth, was NPO, was only given IV, mouth swabbed out. My chemoradiation was canceled of course, and never went to a dentist since I couldn't at that point, and there was no need with just the induction chemo in the begining. I was released from prison six months later, against doctor(s) advise, after 187 days in isolation lol.

So far, so good teeth wise, but the dry mouth, mucocitis, thrush continued while I recovered. About four months later 9/10, I had a recurrence. Bu this time I had left my major CCC, who poisoned me to death, and saw a local oncologist for treatment, but still retained their ENT, who said I needed Chemoradiation, so my oncologist sent me to a radiation facility, but said she could not give me chemo due to my condition, and I was very happy with that, so I was only doing radiation. Went to see a local dentist a relative recommended, again, I was not going back to the CCC or any hospital, after my horrid experience, and was fearful of hospitals at that point. The dentist did the pre-radiation work up, x-rays, and needed several extractions fillings, which were done. I had heard about dental trays, special fluoride, which I also heard fluoride increase risk of cancer, and didn't want to take any medication not necessary after my near fatal reaction to one of the chemo drugs or anti measure meds. I asked if I needed anything special, and was told no, and was given chorhexadine, which he said would take care of everything, and was happy with just the mouth rinse.

Onto radiation 2/11, the usual dry mouth, thrush, mucocitis, dysphagia, not that it was a walk on the park, and believe my prior Tx, issues, compounded the side effects of radiation, but at least I was somewhat mobile, and relied on the peg for the remainder of Tx after the first week, and used the chlohexidine, magic mouth wash, salted water, baking soda rinse, and all the biotene products, dry mouth mouthwash, tooth paste, gel at night for dry mouth.

I finished radiation, and all was fine, so it seemed. About 3 months later, I had an infection, abcess in my back molar, which needed extraction, so had to do the 20/10 HBOT. During that time, I wad interrupted for a blood transfusion, but resumed after 5 days after hospitalization, but I never had the tooth extracted, and needed eye surgery after losing vision in one eye, almost both, was another set back both physically, and emotionally, needed weekly Opthomologist visits, and sometime after that had another recurrence which starts the find and seek process all over again, FNA, PET, doctor visits, planning, but at least the abscess was gone, and extraction put on hold.

About a year after radiation, I started seeing white specs on my teeth, which I found out were demineralization of the teeth or pre cavities. I was so busy trying to stay alive, visiting doctors, I have 7 specilists, dealing with other priorities, getting transfusions, recurrences, I had no time to see about no specs on my teeth lol, but did show them all to my ENT, RO, MO, Dentist, which didn't seem a priority to them either, but think I had a few fillings, a root canal though.

Sometime after, my teeth started chipping. After another recurrence, Chemoradiation treatment in 10/12, I had another abcess, same area as before, saw the dental oncologist at my new CCC who said he couldn't do anything during Tx, and how come I wasn't sent to him in the beginning pre-Tx, and after that is when my teeth started breaking more, root canal teeth falling out, and teeth down to the pulp, and gum line, but was busy with other illnesses, tests, dr visits, hospitalization that took priority, and just dealt with it.

Now to the present, I have another recurrence, Tx was planned, and my teeth decided to give me trouble, and have an infection, abscess in the mouth, jaw. Saw the dental oncologist, who said he can't do anything being I need HBOT, and can't do that until cancer is removed, and abscess was draining, so no need for antibiotic. Two weeks after, another abscess decided to pop up the other side, and saw my PCP, who gave me antibiotic to take 3x day, and have been on them for several weeks, which resolved the abscess, keeping infection at bay, and can only eat certain foods, so not to cause irritation, flare up of infection. After my surgery/radiation on Wednesay, 10/16, I'll have to do HBOT at some point, and have ALL my teeth extracted. So far, the dental oncologist at the CCC is seeing me, and was worried prior being I have Medicare, which doesn't cover dental per say, but I may be in some special program, I don't know, and I'm not asking, stirring up the pot, just as long as my teeth are taken care of, hopefully dentures too.

As far as pain, the teeth can be very painful, usually at the wrong time, on weekends, at night, and emptied my medicine cabinet arsenal a few times to relive the pain, which only the Oxycodone really helped relieve, but that makes me nauseas, and vomit for a few times a day, for days, even from just one pill.

I occsssionly take lyrica or Gabapentin, formerly Oxycodone also, for the constant neuropathy pain 24/7 from chemo, mainly for the legs, feet, which have paralysis too. It's worse the more I do like just from walking, not far either, standing even 10 minutes, weather conditions like rain, humidy. I only take them at night, and really don't like the drugged feeling during the day, and just deal with it otherwise.

That's my long story. I don't know if this will help anyone, and is probably more like what not to do, and what can happen in a relatively short period, 4 years.

Susan, I agree with Christine. I developed ORN in 2010 as a result of RT in 2005. ORN presented with trismus, bone showing and a fistula from the oral cavity through my cheek. I have had HBOT and several bone debridements. Have you had your necrotic bone removed? HBOT is great and does increase vascularization and help healing, but it does not stop ORN. I understand that ORN is rather rare, although it does seem to be under-reported. An additional factor for me in the development of ORN may have been treatment with bisphosphonates (Fosamax) for my osteoporosis for several years prior to my 2005 cancer treatment. Despite use of fluoride since 2005 I have had a number of caries and have required fillings and crowns. No loose teeth at this time and no pain for me. The medical professional who has been most helpful in guiding my dental and ORN treatment has been my oral surgeon who is an MD ~ not all oral surgeons are doctors.

Biphospjonates is a risk factor for ORN, in addition too radiation, injury, such as extractions, and not so much as thought from infection.

Alex has been out of treatment for over 3 years and in that time has lost all his teeth. He originally had 14 removed prior to radiation in July 2010 which left him with 15 or 16. The wires from his dentures put pressure on his "anchoring" teeth and one by one they broke off. By the end of the first year, he had probably lost 4-5 teeth and over the ensuing 2 years, the rest went by the wayside with the last remaining tooth falling out about 6 months ago.

Alex's oral surgeon (part of the head and neck team), is dead against extractions if there is another option, refused point blank to entertain the notion of implants, does not believe in HBO and has suggested that rather than extracting the tooth stubs, the best way forward would be to smooth them down so the dentures fit over the top. As the teeth are quite clearly dead and not causing Alex any grief, this makes some sense to me although I have never seen this approach on the forum. I also know nothing about dentistry or even the anatomy of a tooth, so I wonder if greeblies can get into the dead tooth and cause problems? Should the dead stub of tooth be sealed somehow?

Alex's regular dentist is doing the work but he has little experience with the effects of radiation so is doing the work in consultation with the oral surgeon. This allows us to bypass the waiting lists without paying an absolute fortune just to get Alex some workable teeth. The issues we have are more around lack of support than anything else. It is difficult to get a consult with the oral surgeon let alone have any procedures done and no one else has a clue how to handle things so there is no telling what potential issues we are missing.

If there is some disadvantage or pitfall to the idea of grinding Alex's teeth down so that dentures can sit over the top, we need to know so that we can re-evaluate and/or approach the oral surgeon with issues to be addressed

Hopefully, I will have some information to post next week. I persevered and was able to schedule with a dentist assigned to Dana-Farber's Head & Neck department. I am asking to have all his teeth evaluated, prior to extraction, which is scheduled with local oral surgeon on 11/5.

I understand that there is no magic treatment to resolve these dental complications, but I think an opinion from a CCC should be helpful. Echoing everyone else, the lack of support and guidelines for these long-term effects, makes decision making nerve racking.