Last summer I was diagnosed with squamous cell cancer of the lateral tongue and had a lesion the size of a nickel. It was surgically removed in Nov.'02 without the need for reconstruction. Radiation was recommended but not pursued because the predental consult wanted all my teeth removed before radiation. At the beginning of August '03 a very small reoccurance was found. Traditional radiation is indicated again.

I have made arrangements for extraction of all of my teeth and am okay with this as long as the outlook for dentures is good. Is there anyone with a similar situation and experience with IMRT radiotherapy out there? They are recommending 6 weeks of treatment, twice a day M-F, with expected doses of 120 each treatment.

I have checked into IPT (Insulin Potentiation Therapy), a natural medicine option, but it is not covered by my insurance. If there is good hope for this option I would consider it strongly. The doses of chemo given are about 10% of the "norm" wihtout the traditional side effects.

If there is someone who has experienced oral IMRT perhaps they could contact me. I am most concerned about having enough saliva remaining functional enough to support the dentures. I understand there are new pharmaceuticals available to protect the saliva glands from the radiotherapy but know nothing about its effectiveness.

Any help? please!!!

Thanks,
Russ

No worries, Russ. That is the beauty of IMRT. I had it, I can spit, I can lick envelopes, I don't need a water bottle, and I am undergoing pre-denture treatment. Here's a BIG hint: If your teeth are going to need to be extracted, do it BEFORE radiation. I say that because I did not, and now I am undergoing a series of 30 2-hr. hyperbaric oxygen treatments so that the post-radiation extraction wounds will heal. The specter of osteoradionecrosis (bone death) necessicates these time-consuming treatments and as good as they are, there is no absolute guarantee. You will want to avoid this at all costs. Good luck. Let me know if you need more information about IMRT.

Hi Russ, and welcome to the site. Like Joanna I had IMRT (X 33, 212 Gy/day/M-F) for a stage III/IV tonsil cancer. Whether or not they can save any salivary glands depends on whether they are directly in the radiation field. IMRT does give the greatest amount of control to spare healthy tissue.

They wanted to pull all of my teeth also and I wouldn't let them. I was told the risk of ORN was about 10%. I was willing to go the distance to maintain my teeth. There is still a small risk or ORN even if you get your teeth pulled. I would ask why they want to do this. If your teeth are not in good shape is the only reason I can see. If they can keep the radiation below 6200 gY through the teeth and jawbone, you should probably be ok. Some people here think that IMRT affords less radiation than XRT but that is not true. My tumor got it's 7,000 gY, maximum lifetime dose. XRT merely shotguns all the healthy tissue also. You are fortunate in that your tumor must be fairly well differentiated to qualify for IMRT. I am over 5 months post rad and doing pretty well now. It was no walk in the park for several months. Radiation is a difficult treatment no matter what type it is.

I would avoid any natural medicine options as if it isn't efficacious, you may lose time and allow the tumor an opportunity to spread or metastecize. Especially since this is a recurrence. Typically they also recommend 2 or 3 Cisplatin chemo treatments as an adjunct to the radiation.

I am not sure that you need a salivary function for dentures. Some of my salivary function is returning.

The easy approach is to extract all the teeth eliminating potential problems down the road. Personally I wouldn

Just to set to the record straight, and I am sure Brian is not suggesting I am a less than clean, motivated person, I used fluoride trays nightly, brushed and flossed after EVERY time I ate. In my case, however, years and years of expensive dental work could not make up for genetically poor teeth, which I managed by dint of dollars, to keep longer than anyone else in my otherwise healthy and long-lived family. My point was that if the odds are that a tooth or teeth will need to come out sooner or later, having the extraction(s) done prior to radiation will save you a lot of trouble, so sayeth the Voice of Experience. I do not subscribe to woulda/coulda/shoulda, but if I knew then what I know now...... Bottom line: have a frank discussion with a competent dentist. And good luck!

Even though I was lucky that I need not have any of my teeth pulled out before treatment, my dental problem has been rather serious post treatment. Since there is no saliva to protect my teeth and I am rather lazy to brush my teeth after meals, I have to visit my dentist rather frequently this year to have tooth filling.I always told the dental nurse that I am now working for the dentist. Brian, is it true that tooth extraction is forbidden in the first two years(?) post radiation? I agree that a real chat with your dentist is essential before radiation starts.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Joanna's, absolutely right. For me, it was of the most difficult decisions in the whole process. I got second and third opinions, a report from UCLA School of Dentistry about management of radiated teeth/mouth, full mouth x-rays, custom dental trays, professional flouride, a WaterPik, a battery operated WaterPik (Panasonic), Biotene, a baby's toothbrush, and, like Brian, have become fanatical about dental care (not that Joanna wasn't - I know she was). And her story was very similar to mine - lots of money spent on preservation over the years i.e., many crowns, regular cleaning and x-rays). The point I am trying to make is that we are all different. There are many variables, for instance, I just found out that not all dental hygienists clean below the gum. That can make all the difference. After Joanna's plight, I made an appointment immediately with my dentist and had x-rays taken and a thorough dental exam to be sure that my teeth are holding up. God knows I have enough fear about all this stuff and my teeth are doing great. I had no evidence of below the gum decay. I am writing this with a flouride tray in my mouth.

I want to caution you also that the risk of ORN is a lifetime one.

Like Brian said, I urge you to get a second opinion. I would start by having a frank discussion with your regular dentist about the actual condition of your teeth and gums.

Many have stated that losing their teeth was the most traumatic part of this experience.

Hello, Karen. I am not trying to put words in Brian's mouth at all, but I think I can answer your question. When I learned I had to have extractions just one year post treatment end, I did a lot of research. There is no mention I found of any 2-year waiting period. The important thing is the 20 hyperbaric treatments prior to extraction, which causes the growth of new capilaries in the radiated bone. This will, if all goes right, allow the extraction wounds to heal. 10 more treatments are given right after the surgery for the same reason. People with more money than brains take these treatments to regain youth and beauty. I, however, have noticed no difference (grin).

Russ, I had the same radiation treatment they are planning on you, twice a day for 6 weeks, etc, to the left side of tongue as well as neck. My teeth themselves are in good shape, but do have a history of peridontal desease...Scaling and root planning are routine every 6 monts.

However, at the outset, there was never brought up a need to pull teeth for the treatment, I asked about it, but both the dentist and radiation oncologist said no, keep the teeth.

Guess every case is different, but I don't think having all your teeth pulled, especially with IMRT is a necessity these days. Depends on the condition of the teeth and jaw bone to start with.

I am sure the reason they want the teeth out are because of the post radiation complications in extraction. As I understand, decay is more frequently seen after and the osteoradionecrosis (sp?) would be more traumatic becuase of my compromised immune system, specifically I am HIV+. I believe it to be a "risk management" issue. I don't want to invite future difficulties and will play along. Based on Joanna's comments, I think they should come out now...as a preventive measure for later. It is not easy to go backwards and as she said I am not a woulda/coulda/shoulda kind of person...anymore.

I really appreaciate all the perspectives, they are so defining.

Again, thanks
Russ