One patient with glioblastoma still alive nine years later
by redrover on Tue Feb 07, 2012 12:51 AM
My husband has been diagnosed with T1 tonsil cancer. The surgeon has referred him to the doctors who will be in charge of the radiation therapy and an oral surgeon. He's saying that my husband will have to have all of his teeth removed! In some ways this is upsetting him more than the cancer itself. Is this a typical?
by GoldDustWoman on Tue Feb 07, 2012 01:25 AM
I am sorry to hear of your husband's diagnosis. It can be necessary to remove teeth before radiation treatment - it depends on the condition of the teeth. Your husband should see a dental oncologist if possible rather than an oral surgeon. I'm not sure what kind of a surgeon it was who referred you, but if he's not a dental expert he may not be equipped to determine exactly what must be done in your husband's case. Tell him not to worry until he's seen a specialist and if at all possible seek out a dental oncologist or a dentist/oral surgeon who specializes in treating head/neck cancer patients.
by RogerRN43 on Tue Feb 07, 2012 03:39 AM
Radiation damages salivary glands. Without saliva, natural protection for the teeth are gone, enamel can erode easily. Secondly, radiation is absorbed in the lower jaw and over time, circulation is decreased and in some cases, jaw necrosis can occur. Gumlines recede, bone is exposed, and teeth can crumble and fall out. So from both ways, survivors can have a battle keeping their teeth. If extractions are required after radiation, the bed can be difficult to heal and hyperbaric oxygen treatments are needed before and after seeing the dentist/surgeon. An unhealed tooth bed can be prone to infection and that can lead to jaw necrosis.
Sounds scary, but there are survivors who have kept their teeth, and there are survivors who are doing well with dentures because their teeth were removed prior to radiation.
If his teeth are not in optimum health now, getting them removed will prevent problems later. As stated by GDW, his teeth should be assessed properly by a qualified dental specialist. That will help him make an educated decision.
by PopPop on Tue Feb 07, 2012 05:14 AM
Just to add to the fine points GDW and RogerRN43 mentioned.
I am out of treatment 7 years now for Base of Tongue cancer, a neighbor of mine is out of treatment 14 years now for Tonsil cancer. Both of us had radical neck disections followed by 7 weeks of radiation. We both kept our teeth as they were in good shape.
As mentioned by Roger, the radiation does play havic on the teeth and gums. Maintenance of the teeth is a most if he wishes to keep them. Flouride treatments to the teeth will be a life long thing. My neighbor has recently had one of his teeth pulled out due to it cracking, he told me that he ate a hard pretzel. He did the hyperbaric oxygen treatments that Roger mentioned and healed up fine.
As GDW mentioned, have your husband talk with a Cancer Dentist that is familiar with the results of the radiation. They will be honest and suggest the removal of the teeth if they are in bad shape. If they are in good shape, you husband may want to keep them and that is the feeling I am getting from you post. I do not regret keeping mine. Yes, I have one more chore to do each day, but I do my flouride treatments just before taking a shower, etc. No big deal, just have to use special toothpaste/ gel.
My Best to Both of You and Everyone Here
by GoldDustWoman on Tue Feb 07, 2012 05:37 PM
I just wanted to add a few words of encouragement. Like PopPop my husband was able to keep all of his teeth too. That was a blessing because I can honestly say removal of his teeth would have been more traumatic than cancer and it's treatment for him. I'm not sure he would have agreed to do it. He's only a year out (vs. PopPop's 7 years) but so far all is well. He does his flouride treatments and sees the dentist faithfully every 6 months and has had no cavities or any other dental issues. But diligence is critical.
Much love ~ GDW
by redrover on Tue Feb 07, 2012 06:58 PM
Thanks again for your information. Don't mind telling you I am scared. Glad that your husband is doing well, and I wish the best for both of you, and thanks for caring enough to add a second response. Scheduled to see oral surgeon next Monday. Am hoping for good advice and good news.
by Sdurnell on Fri Feb 10, 2012 05:18 PM
I had all my teeth pulled two weeks before I began radiation. In my case, all my molars had fillings, most of them over 45 years old. And I had gum disease as well. The radiation oncologist, ENT, and oral surgeons all regaled me with horror stories of people who elected to keep teeth they shouldn't have. Because you have much less saliva, teeth are not well protected after radiation. There is a very strict regimen of fluoride rinses and other tooth care after treatment. But for many this may not be enough.
If you need any treatment that involves more than just the superficial, say a root canal or an extraction, it would require something on the order of 30 dives in a hyperbaric chamber in order to oxigenate the jawbone to help it heal afterward. My doctors told me of folks who had parts of their jaw bones die and needed artificial ones, and sometimes they did not take so they were left without a jaw. I have also heard a lot of problems here from folks who suffered from broken teeth (also a result of the radiation) and other dental nightmares.
So after the initial horror of losing all my teeth, I just decided that I'd rather lose my teeth and be assured of keeping my jaw. It's been a hassle, but I don't regret it.
Losing all your teeth, if you go that route, is another factor in favor of getting a feeding tube early. My doctors thought I could do without one as I'm "tough," but it was just too hard to get enough calories. I lost 35 pounds, and while I did have some to lose, it was not that much! It's easy to get to a good weight with a tube.
by Roselvr on Fri Feb 10, 2012 05:56 PM
Have to say that what you said is a great way to look at it.
by jalind on Sun Feb 12, 2012 01:18 AM
On Feb 07, 2012 12:51 AM redrover wrote: My husband has been diagnosed with T1 tonsil cancer. The surgeon has referred him to the doctors who will be in charge of the radiation therapy and an oral surgeon. He's saying that my husband will have to have all of his teeth removed! In some ways this is upsetting him more than the cancer itself. Is this a typical?
On Feb 07, 2012 12:51 AM redrover wrote:
I kept all of my teeth, but I had three things going for me:
1. All my 18 yr molars (aka wisdom teeth) had been pulled years ago, and all eight of my 6 and 12 yr molars had already been crowned very greatly reducing the risk that any of them might be yanked out at a later date very greatly reducing the risk that any of them might have to be yanked out at a later date. All the gold in the crowns was another issue we had to deal with during radiotherapy as gold reflects and "scatters" radiation, and that was relatively easy with devices similar to athletic mouth guards to provide a gap between inside of cheek and the teeth. A little space goes a long way.
2. My radiotherapy was on one side, it was not bi-lateral, and it was specifically targeted to the parotid bed and my neck where all the lymph nodes (nearly two dozen) had been removed in the neck dissection.
3. My teeth, gums and jaw were in excellent condition. My molars that had been riddled with cavities decades earlier eventually failed, which was why they were all ultimately crowned. The Rad Man was quite adamant that I was to have as thorough a dental exam as possible and that *any* dental work that might need to be done (acutely needed or predictable in the future) *must* be done prior to starting radiotherapy.
In these respects I consider myself lucky as many others have had some or all of their teeth pulled. Your situation will be driven how healthy your teeth, gums and jaw are, the radiation field (what will be irradiated) and how much of your teeth and jaw will be in that field, and the total dosage they will received. Head/neck radiation for oral cancers is well understood in terms of what it does, and its side effects.
I agree with what others have suggested: have your dental exam done by someone experienced with head/neck cancer and the dental side effects from its radiotherapy treatment. These side effects are NOT trivial. I'm still on a 3-month dental exam cycle and probably will be for life. In addition I'm on a permanent prescription for a Rx-only extremely high fluoride toothpaste, and continue to suffer from xerostomia (dry mouth) albeit it has improved some to where it's tolerable and I can cope without medication (e.g. Salagen). If any major oral surgery is required at some point in the future there will be the risk of the radio-osteonecrosis in the jaw that others have cited. Even without any oral surgery, we'll always be on the alert for it, as it can arise on its own years later.
I'm a year and nine months out from radiotherapy. While I've had to learn how to cope with some of the surgery and radiation side effects, it has NOT imposed any physical limitations on me, and I now have a very physically active and athletic lifestyle. I may own the disease, but it will NOT own me!
by redrover on Mon Feb 13, 2012 03:34 PM
Thanks for your great and kind responses. Sorry I was slow to respond but I am trying to take a day off from cancer and think of everything I need to do at home and for my family before I start chemo and radiation. I go for my dental evaluation this afternoon so will put "the cancer suit" back on then.
I am not really afraid of what is to come no matter what, don't know if it is denial or acceptance since they both feel pretty much the same. I just know I want to make sure I get done what needs to be done and that I have been putting offl (things like setting up the information for my family to know what I want, living will, updated will, etc.) I just want everything in order in case but I certainly intend to not need it!!!!
I am concerned about the pain levels and the loss of being able to eat from the treatments. Like you, mine is isolated to one side and the rad oncologist thinks that the treatment will be centered on just the right side. I am fortunate in that my tumor and the one lymph node are small. I hope it continues to be that isolated. I have always tried to live with the notion to prepare for the worst, hope for the best and be pleasantly surprised when everything comes out somewhere in between.
It is good to hear how you are doing and that your recovery is doing well. I hope you remain NED forever and that you are not more that bothered by the need to work hard to maintain your dental health. I hope I do as well. Please let me hear from you again from time to time, I am interested in knowing how you're doing.
Peace, and best to you and your family
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