I am post treatment almost 2 years. About a year after radiation ended, my teeth began to stain badly at the jawline. The dentist said it was rapid decay as a result of the radiation. The radiatio oncologist never advised this could be a post treatment problem. I am 64 and had perfect teeth, never a cavity.

About a week ago i lost most of a tooth and part of another has broken off. Dentist warned me I would have to have teeth removed and get dentures.

Is it dangerous to have my teeth removed? Should I just let them fall out naturally I look like a meth addict?

Has anyone been successful in getting medicare to cover after radiation? I talked to Medicare and they said if the surgeon said there was a medical reason for the removal it would be covered.

Im sick of cancer continuing to be such a major part of my life. Dont get me wrong -- I'm so grateful to be alive. I have come to grips with my major speech impediment and my inability to eat many food (i cant taste much anyway). But I want to be proactive and get this issue behind me.

As far as I'm aware, it is not dangerous to have teeth removed so long after rads as you will heal better now. During rads, and up to 6 months after, it takes a long time for your body to heal because rads is so brutal on the system.

Get them taken out professionally as you are less likely to have infection. Whereas leaving broken or rotting teeth to fall out naturally can cause so many issues. Before my cancer I broke a tooth on a hard nut. Part of the tooth broke off and cut my tongue quite badly, and part of my gum. It was painful.

Your dentist will also be able to offer advise on how to keep the rest of your teeth.


*****. [b]ADMIN NOTE[/b] *****

This post contains incorrect info. Always remember at OCF, we are NOT medical professionals. Our knowledge comes from going thru OC ourselves and/or being a caregiver for an OC patient ... this does NOT replace advice given by a true medical professional. Also since OCF is based in the US, almost all posts will be written with that in mind. Anyone from another country will have a very different medical system, other options and possibly other treatment options. The US takes much longer to approve new treatments and/or medications thru the FDA.

Our members try to help but not everyone has been exposed to everything OC patients ask questions about. The info in this post is incorrect ....After rads, its extremely important OC patients go to a dental professional who is very experienced with the special handling that’s necessary for OC patients/survivors. A great many dentists OC patients used before their OC diagnosis and treatments are NOT qualified to treat them after rads. Being- treated by a dental professional without proper education and experience could create far bigger issues down the road. As a few of our “old timers” more experienced members explained correctly in their detailed posts...ostheoradionecrosis is one of the serious issues that can easily happen when a post OC patient sees an unqualified dental professional. This can be a life threatening condition caused by not doing HBO 20 before and 10 after any dental extraction. This condition and special handling OC patients require doesn’t change after a certain amount of time goes by since having rads... its permanent!!!

Anyone reading this who is a caregiver or an OC patient/survivor .... PLEASE always use caution when having extractions done after rads!!! Root canals don’t usually need HBO dives but always ask your treating dental pro to be certain. Using extra caution before any post rads procedures is unfortunately part of every OC survivors new normal. Most of us have gone thru horrific things to eliminate our OC, not a single one of us want to go thru any of those things again so we all try watching out for each other to avoid bigger problems. At OCF, it’s like we’re one gigantic family of long lost relatives all sharing a common bond. On a rare occasion we get it wrong (as you can see above) but we all learn from our honest mistakes and know more about the special post rads dental issues so the wrong info isn’t shared, spread or even worse used!
Someone could be hurt by following the wrong advice which is NOT at all what anyone wants to see happen. Without fully understanding the topic being discussed it’s is best to stick to replying about what’s known. In the rush to assist and comfort others, this can easily happen, going forward we all need to be aware of posting about things we aren’t sure about. OCF is monitored unlike most other open message boards to ensure only correct info is shared. Going forward we can all learn to stick to what we know and avoid more complex subjects that we have not experienced yet. As with any medical procedure, a second opinion is always a good idea and if still unsure get a third! By being cautious and getting all the info possible from qualified medical professionals helps us to better manage our care and understand more about new things to be aware of.

Thank you for taking the time to read this, have a GREAT day!!!

Removing teeth post-radiation therapy is a risk due to the possibility of developing ORN (osteoradionecrosis) resulting from compromised blood flow to the jaw. If you check my past posts on this topic, you will see that it is a complicated decision. My husband did not get good advice until he consulted a dental surgeon who was part of an oral cancer team. I would not proceed with dental extractions until seeing a dental surgeon with experience treating oral cancer patients.

There are many factors to consider. The dental surgeon should review a mapping of your radiation dose targets. This is obtained from your radiation oncologist in order to check the high-dose areas of radiation in relation to the teeth that are being considered for extraction.

I know it's a lot to absorb. The OCF pages under dental issues are helpful and your radiation oncologist should be able to give you some guidance.
All the best,
travelottie

Ahhh thank you. The hospital dentist has clearly not been giving me enough information (well pretty much not a lot)
I'm now with a different dentist for my dental care who has worked with OC patients and has asked if he can consult my team with some treatment I need to have done. It's going to cost me a bit, as the hospital dentist is free, but he makes me feel valued and gives me a lot more information than I've been given.

I will challenge him about a tooth removal I need to have done, whether he has contacted my medical team or not.

I’m 16 yrs out and experienced many dental issues and agreed pulling your teeth is something you do Not want to just jump into without consulting several dentists/ oral surgeons that have experience with oral cancer patients. I’m only 39 and have had Hyperbaric Oxygen Chamber treatments to help but the threat of osteonacrosis is still extremely high. Whatever decision you make I wish you all the luck but please do not just jump into removal and find a way to get it coded as medical, that will help with the bills.

I had radiation in 2006 and I’ve had numerous dental issues since then. I believe I posted about them on this forum.

HBOT is a must post-radiation. The Marx Protocol calls for 20 “dives” (HBOT treatments) before an extraction, and 10 “dives” afterwards.

Insurance is always a challenge for us and dental issues. Extractions and HBOT should be covered, but not sure about dentures. In the USA extractions are generally done by someone in the dental field and some things are covered by dental insurance and others by your medical insurance.

My radiologist and my dentist both told me that if I ever needed any teeth extracted I would need to have 20 HBO treatments before extraction, and ten following. This is to build up blood in your radiated jaw so that you don't suffer jaw deterioration. I can't even imagine that after all we've dealt with, and are dealing with. My medical insurance absolutely covers it. I live in the USA.

My radiologist also mentioned the benefits of HBO therapy for over all radiation injury, not just for tooth extractions, which I didn't need. I am 1 year, 7 months post radiation. I did 60 treatments this Summer. Mon - Fri for almost two hours in the chamber every morning for six weeks. My medical insurance covered it. Now we all know what the #1 saying is for oral cancer patients. "Everybody's different." But, I must share. I completed my last treatment two weeks ago. By no means is it a cure all, for me anyway. What it DID do for me is reduce swelling I had in my throat and mouth. After about 1/2 way through I had people close to me start telling me how much better I was sounding. I didn't realize how abnormal I sounded. Three different people mentioned I used to sound deaf. Not anymore. My speech is back to normal. As I said, we're all different in that we have various types of oral function loss. I still have pretty severe xerostomia, dry throat.(I had 4 out of 6 salivary glands removed. Unfortunately the ones removed were the most productive ones.) I cannot eat normally at all. Pretty much liquids or salads, some pastas. The HBO treatment helped my swallowing immensely. Before treatment, food and liquid would get stuck in the top of my throat and sometimes want to go down the pipe. That problem disappeared. I know my saliva glands are producing at least a little bit more because I'm not needing to drink as much water. Another thing I am really glad about is now that I have done these dives I won't need to any more if I do have teeth issues in the future. When oxygen builds the blood cells, they're permanent.

Just wanted to share that with you. I've learned a lot just reading fellow OC patient's posts. Anything little thing that can improve our quality of life I am happy to read and send. I do hope you're able to get HBO for your teeth. Take Care!

Hmmm I need to speak to my hospital to see if they will refer me for HBOT, otherwise I'm spending £120 (about $140) per hour session.

Thank you so much for the information. Teeth weren't mentioned apart from keep them clean and have plenty of fluoride.

I’m so happy to hear that you had negative issues with HBO. I was just told yesterday I will need this and I’m going to see my surgeon today. Do you mind sharing it? Did you feel trapped? Could you sit up? Etc?

I believe most chambers are see-thru like the one I was in which makes it so much better! I really didn't feel claustrophobic at all. My nurse never left the room. I could see her the whole time. I took two xanaxs for anxiety for my first dive. After that I went down to just one Xanax to help me sleep, which I did for almost every dive. If I didn't sleep, I watched an hour and 1/2 of TV shows. I was not able to take anything in there with me. I had to wear white cotton underwear and a hospital gown. I couldn't sit up, but I could roll over on my sides so I could sleep better. They have a speaker in them so if you need to speak to someone you can. You can always reassure yourself too that if you start to feel panicky, they can bring you out, but it will take 9 minutes for the chamber to depressurize. I said to myself every time I was being rolled in, "Let the healing begin" and it was true. The 100% oxygen truly works. It even made me look more youthful. Hollywood celebs actually use them before big events like the Oscars because of the effects it has on your skin cells. Try not to sweat it. You'll do great and probably find it very relaxing once you get comfortable with it. I hope this helps.

No problem Dizzey! From what I understand not all OC patients have teeth issues due to radiation, and I believe it's something that happens down the road if you do. Probably why it wasn't mentioned. But studies are showing that HBO has great benefits for OC patients above and beyond jaw deterioration prevention. I learned that radiation to the oral cavity is so damaging that it takes a lot of dives to repair some of the damage. My insurance covered the maximum of 60, which is what I did. I hope your NHS will help cover the treatment if you decide to do it. I would like to see HBO therapy promoted by all Radiologists for follow-up treatment after radiation. I think it should be protocol after experiencing my results. Good luck to you! I am not on this site all that often but I've read some of your posts and it sounds like you have an excellent attitude and you are taking this massive life changing challenge by the horns. It's remarkable and inspiring.

Hi. I’m in the UK and after a hemiglossectomy at the beginning of October am deciding whether or not to go ahead with Radiotherapy. Like you, dentistry has only been mentioned as an afterthought.

Just wondered if you’d made any progress?

Hey TG,

I went back to my medical team and asked them for advice. The hospital dentist is a nightmare, so I said I'm happy to work with my own dentist and pay for private dentist, but I need their advice on what to do. T
Apparently I had 65 greys per fraction of radiotherapy, which is crazy high. My team said I need to wait 3 years before considering any removal of healthy teeth.

I had no problem with that at all. They said I could continue to have my hygienist deep clean appointment.
At the time of my appointment, my tooth at the front was quite loose, and the dentist knocked it whilst cleaning the area. The tooth fell out! It turns out it wasn't attached to the bone any longer. Fingers crossed I don't have any long term effects in the future.

Hi Stessy,

Where are you in the UK? I'm North London.

For me, whilst radiotherapy is brutal, it is worthwhile in the long run as it hopefully gets rid of any cancer and pre-cancer cells that are microscopic. It's hard work, but if I had to do it again, I would.