Teeth after radiation and many years...

djlazyboy

Hello,

13 years ago I survived Squamous Cell Carcinoma originating from my nasopharynx. I received a lot of regional radiation and now have a few front teeth left and struggle eating on a day to day basis. I am only 27 and have many more years of tearing food apart ahead of me. I was seen by a oral prosthetic Dr. and after a meeting with my radiologist and Chemo oncologist they all agreed that there should be no extractions and that I should just let my teeth rot away. Now I think that is insane. Not only has it had a major affect on my self esteem, but it has become an issue in the business world and most importantly to my health. I was hopeful when I heard about implants but as there is little hope for a fast bone healing I a have long forgotten and have accepted an option of dentures. I just want to smile, and most importantly eat some grub! I weighed 15 more pounds when I was diagnosed and was 3 inches shorter then.

Any post radiation dental information to link me up with out there?

Regards,

Gregory Indermark Sherrell

Hondo

Hi Gregory

Welcome to CSN, first you really are a survivor 13 years passed that great news to hear.

On your teeth ask your oncal doc about doing Hypobaric treatment. I go on Monday to see a Oral surgeon because some of my teeth are bad and my oncal doc said is any need to be pulled I will need 30 Hypobaric treatment first.

I am sure you will get a lot of post on this, so for now take care and please keep posting.

djlazyboy

Hondo said:

Hi Gregory

Welcome to CSN, first you really are a survivor 13 years passed that great news to hear.

On your teeth ask your oncal doc about doing Hypobaric treatment. I go on Monday to see a Oral surgeon because some of my teeth are bad and my oncal doc said is any need to be pulled I will need 30 Hypobaric treatment first.

I am sure you will get a lot of post on this, so for now take care and please keep posting.

low oxygen.
Hondo,

Thanks for your response. I was looking at your profile after I read your cancer. So now there are 3 of us on here. The Hypobaric treatment was brought up early by the overseeing Dr. at UCSF and we discussed doing that treatment, but my radiologist yelled and screamed that there be no extractions at all. I really want to seek more opinions but as she and all of my original doctors work very closely and meet every week for a cancer board, I am afraid they're right and am discouraged to seek more opinions in fear of yet another disappointment.

Thanks for the response tho.

13 years and counting!

Regards,

Gregory

thegirlfriend

djlazyboy said:

low oxygen.
Hondo,

Thanks for your response. I was looking at your profile after I read your cancer. So now there are 3 of us on here. The Hypobaric treatment was brought up early by the overseeing Dr. at UCSF and we discussed doing that treatment, but my radiologist yelled and screamed that there be no extractions at all. I really want to seek more opinions but as she and all of my original doctors work very closely and meet every week for a cancer board, I am afraid they're right and am discouraged to seek more opinions in fear of yet another disappointment.

Thanks for the response tho.

13 years and counting!

Regards,

Gregory

my boyfriend, upon being
my boyfriend, upon being told he would have to have 2-3 teeth pulled before rad/chemo treatments (no surgery)said if anything occurred after treatment, then he would have to have
the hyperbaric treatment beforehand because of the inability or decreased ability to heal properly. My point is, his dental onco is saying the same thing as your overseeing Dr. To be honest, its really nice that your radiologist screams that there will be no extractions, but what if you do need to have any more extractions?
Remember knowledge is everything, and the more you have, the better decision you can make for yourself. Its all your decision in the long run, not the drs. They can offer you all of the choices. You pick the one you want, so get as much info as you can. You can do this, you did it at such a young age once already from what I read.

Kathy
thegirlfriend

djlazyboy

thegirlfriend said:

my boyfriend, upon being
my boyfriend, upon being told he would have to have 2-3 teeth pulled before rad/chemo treatments (no surgery)said if anything occurred after treatment, then he would have to have
the hyperbaric treatment beforehand because of the inability or decreased ability to heal properly. My point is, his dental onco is saying the same thing as your overseeing Dr. To be honest, its really nice that your radiologist screams that there will be no extractions, but what if you do need to have any more extractions?
Remember knowledge is everything, and the more you have, the better decision you can make for yourself. Its all your decision in the long run, not the drs. They can offer you all of the choices. You pick the one you want, so get as much info as you can. You can do this, you did it at such a young age once already from what I read.

Kathy
thegirlfriend

Teeth
Thank you for the response. I agree. Knowledge is key. That is exactly why I signed up on this site. I feel that I have exhausted my resourses and drive to a simple conclusion. I know that I am probably not the only person in the world who is/has been in this situation. There must be a better answer than "just let them rot away". I long for Doritos, Steak, popcorn, nachos, & corn nuts! Mashed potatos, and milk shakes get old real fast. It's depressing to know that not only did I have to deal with cancer but the long term affects from treatment haunt you forever. I am used to the dry mouth, I just have to drink everytime I eat. But when I can barely eat, and people I haven't seen in a while continue to tell me that I look much skinnier, it bums me out.

All I want is to live the rest of my life like a healthy human naturally.

I will not stop until I can get there.

Thanks again for your info.

Regards,

Gregory

HAWVET

djlazyboy said:

Teeth
Thank you for the response. I agree. Knowledge is key. That is exactly why I signed up on this site. I feel that I have exhausted my resourses and drive to a simple conclusion. I know that I am probably not the only person in the world who is/has been in this situation. There must be a better answer than "just let them rot away". I long for Doritos, Steak, popcorn, nachos, & corn nuts! Mashed potatos, and milk shakes get old real fast. It's depressing to know that not only did I have to deal with cancer but the long term affects from treatment haunt you forever. I am used to the dry mouth, I just have to drink everytime I eat. But when I can barely eat, and people I haven't seen in a while continue to tell me that I look much skinnier, it bums me out.

All I want is to live the rest of my life like a healthy human naturally.

I will not stop until I can get there.

Thanks again for your info.

Regards,

Gregory

Hyperbaric treatment and teeth
Like you and Hondo, I am another NPC survivor. My treatment was 12 years ago. I went for a dental check but was not required to pull any tooth out before radiation treatment. I had never had Hyperbaric treatment so I asked my dentist last week. He told me that it normally is used when a few teeth are extracted to let the area heal faster.

I do not understand the "rot away" thinking. After treatment, I requested from my dentist to save my teeth as much as possible. I asked that they be fixed before extracted. I had a few repaired a couple of times as they tend to rot faster. Since treatment 12 years ago, I have lost a couple. I would prefer having my original teeth rather than partials. I have partials now and was considering teeth implant.

With that in mind, the dentist had recommended a few things. I brush with prescription flouride toothpaste and rinse with Act nightly. I brush or rinse my mouth after eating.

I am much older than you and I can see your concern about eating. I do not know if in your case, it will be possible to have life return back to normal. Since your cancer was a while ago, you should know by now of your possibility of recovery.

I have decided to accept my eating disorders and live life to the best possible. My dry mouth condition has worsened. I have not eaten a steak, pop corn, nachos etc since treatment nor do I anticipate eating them ever again.

My weight has remained down, but I recently have increased my intake of Ensure.

My very best wishes to you.

djlazyboy

HAWVET said:

Hyperbaric treatment and teeth
Like you and Hondo, I am another NPC survivor. My treatment was 12 years ago. I went for a dental check but was not required to pull any tooth out before radiation treatment. I had never had Hyperbaric treatment so I asked my dentist last week. He told me that it normally is used when a few teeth are extracted to let the area heal faster.

I do not understand the "rot away" thinking. After treatment, I requested from my dentist to save my teeth as much as possible. I asked that they be fixed before extracted. I had a few repaired a couple of times as they tend to rot faster. Since treatment 12 years ago, I have lost a couple. I would prefer having my original teeth rather than partials. I have partials now and was considering teeth implant.

With that in mind, the dentist had recommended a few things. I brush with prescription flouride toothpaste and rinse with Act nightly. I brush or rinse my mouth after eating.

I am much older than you and I can see your concern about eating. I do not know if in your case, it will be possible to have life return back to normal. Since your cancer was a while ago, you should know by now of your possibility of recovery.

I have decided to accept my eating disorders and live life to the best possible. My dry mouth condition has worsened. I have not eaten a steak, pop corn, nachos etc since treatment nor do I anticipate eating them ever again.

My weight has remained down, but I recently have increased my intake of Ensure.

My very best wishes to you.

teeth
Hawvet,

I have about 11 teeth I consider usable, not salvageable, just useable. I was using fluoride and a few other things. It just kept getting worse. I don't want to be in this position. I still go to Outback but it hurts to eat the steak. I would love to have implants, but I am willing to take dentures. Dry mouth is a pain but I can manage. Congrats on your NPC a** kicking. Life's a pain. But if you want to play in this playground we call the world/life then we must play by the rules.

Thanks for your wishes.

Regards,

Gregory

Kent Cass

djlazyboy said:

teeth
Hawvet,

I have about 11 teeth I consider usable, not salvageable, just useable. I was using fluoride and a few other things. It just kept getting worse. I don't want to be in this position. I still go to Outback but it hurts to eat the steak. I would love to have implants, but I am willing to take dentures. Dry mouth is a pain but I can manage. Congrats on your NPC a** kicking. Life's a pain. But if you want to play in this playground we call the world/life then we must play by the rules.

Thanks for your wishes.

Regards,

Gregory

teeth
Janymac and I have experienced tooth-loss at their tops, Gregory. Jany has over 7-years in, and from the other side of the Eastern pond. Nobody at C&R said anything about the teeth before treatment- other than I had to get a pre-Chemo check-up, which didn't detect the future need for the post-treatment root canal I had to have done. Between the loss of gum tissue, and breakdown in the tooth structures...Reckon such is life, post-C treatment for our H&N. I have 1 bridge, and five crowns, along with three gaps from teeth I had pulled and left the spaces empty. And, yeah, I am watching the enamel of my teeth with fillings, along with the tops of all my teeth, disintegrate. I'm NPC, 17-months, and my treatment was an aggressive Cisplatin/FU5 induction with the rads. Figure major dental work is in the cards down the road. Thing is, and Hawvet is as great an actual authority as any of us, I still cast breath of a regular basis. Battle ain't over when treatment ends. The battle just changes a bit for the better. Nobody has more tenure with the better battle than Hawvet, and his participation on this forum is a blessing to all.

Hang in there, Gregory. I am the chef-style SALAD FREAK, with the orange French dressing, and I weigh a couple pounds more, now, than when the C entered my life. Oh yeah.

kcass

JGE

Kent Cass said:

teeth
Janymac and I have experienced tooth-loss at their tops, Gregory. Jany has over 7-years in, and from the other side of the Eastern pond. Nobody at C&R said anything about the teeth before treatment- other than I had to get a pre-Chemo check-up, which didn't detect the future need for the post-treatment root canal I had to have done. Between the loss of gum tissue, and breakdown in the tooth structures...Reckon such is life, post-C treatment for our H&N. I have 1 bridge, and five crowns, along with three gaps from teeth I had pulled and left the spaces empty. And, yeah, I am watching the enamel of my teeth with fillings, along with the tops of all my teeth, disintegrate. I'm NPC, 17-months, and my treatment was an aggressive Cisplatin/FU5 induction with the rads. Figure major dental work is in the cards down the road. Thing is, and Hawvet is as great an actual authority as any of us, I still cast breath of a regular basis. Battle ain't over when treatment ends. The battle just changes a bit for the better. Nobody has more tenure with the better battle than Hawvet, and his participation on this forum is a blessing to all.

Hang in there, Gregory. I am the chef-style SALAD FREAK, with the orange French dressing, and I weigh a couple pounds more, now, than when the C entered my life. Oh yeah.

kcass

Wow... 13 years!
Man I love to hear long term survivors. thanks for joining!

Question for anyone, is the teeth issue predominently for NPC? I had Base of Tongue so My neck and throat took a pretty bad radiation hit. Not sure how much he could avoid the teeth. Haven't had any trouble until TODAY! I broke a tooth that had a pretty substantial filling in it that was about 20 years old. Side of the tooth broke off. Going tomorrow and was wondering if I will have any trouble getting a root canal and a crown.

Kent Cass

JGE said:

Wow... 13 years!
Man I love to hear long term survivors. thanks for joining!

Question for anyone, is the teeth issue predominently for NPC? I had Base of Tongue so My neck and throat took a pretty bad radiation hit. Not sure how much he could avoid the teeth. Haven't had any trouble until TODAY! I broke a tooth that had a pretty substantial filling in it that was about 20 years old. Side of the tooth broke off. Going tomorrow and was wondering if I will have any trouble getting a root canal and a crown.

Teeth and NPC
Had a root canal, post-treatment, and it went very well. Dentist did an excellent job freezing it- worst of it was the 2nd shot to freeze it deep in the lower area. And the Dentist is talking about a Crown on that tooth- but we're waiting on the next Pet Scan results. Didn't get any Hyperbaric therapy. Possibly, how well the root canal goes depends more on the capabilities of the Dentist. Hope you've got a good one.

Don't think NPC has any significance to the tooth decay- other than what treatment is done for NPC. I was unknown Primary, so had to have full head and neck. Got an aggressive C&R, and my mouth became a trainwreck at the end of week#1, with the interaction of the Cisplatin/FU5 and rad. You said your neck and throat took a bad rad hit- but for me it was always more of a mouth issue. Left-side of my neck had two tumors that were rad-zapped into oblivion, so my neck did get major rads; and, swallowing did become difficult, and my throat was sore. The NPC significance has to be with what treatment is called-for with NPC.

kcass

ljoy

Dental Problems
Anyone who has had radiation to the head and neck is subject to having dental problems in the future. It all depends on the amount of radiation to a given area. I had 7200 rads on the right side and I'm now going through hyperbaric treatments and extraction of two jaw teeth. I'm four years out from tonsil cancer.

I too do not understand the doctors telling you to let your teeth continue to decay. The problem is the radiation destroyed the blood cells in the bone and tissue that support the teeth. So there is no way it can get better. The hyperbaric treatments get oxygen to the plasma level of your blood which helps restore bone and tissue. It normally requires oral surgery to remove the teeth and debried the dead bone down until they hit blood. If everything goes right the tissue and bone will heel.

Almost all the patients at the hyperbaric center are post head and neck patients with radio necrosis to the mouth area. According to my radiation oncologists it is about 10-15% of head and neck patients who will have radiation damage requiring follow up treatment.

I would seek another opinion from a well respected cancer center. The success rate is very high with the hyperbaric treatments along with oral surgery.

djlazyboy

ljoy said:

Dental Problems
Anyone who has had radiation to the head and neck is subject to having dental problems in the future. It all depends on the amount of radiation to a given area. I had 7200 rads on the right side and I'm now going through hyperbaric treatments and extraction of two jaw teeth. I'm four years out from tonsil cancer.

I too do not understand the doctors telling you to let your teeth continue to decay. The problem is the radiation destroyed the blood cells in the bone and tissue that support the teeth. So there is no way it can get better. The hyperbaric treatments get oxygen to the plasma level of your blood which helps restore bone and tissue. It normally requires oral surgery to remove the teeth and debried the dead bone down until they hit blood. If everything goes right the tissue and bone will heel.

Almost all the patients at the hyperbaric center are post head and neck patients with radio necrosis to the mouth area. According to my radiation oncologists it is about 10-15% of head and neck patients who will have radiation damage requiring follow up treatment.

I would seek another opinion from a well respected cancer center. The success rate is very high with the hyperbaric treatments along with oral surgery.

Teeth after radiatiin
Thank you! This is why I signed up. I need some recommendations on where to go to get a second opinion. I turned 28 yesterday and don't want to spend the next 50-60 years drinking apple sauce. Where should I go? Anyone in the bay area?

ratface

djlazyboy said:

Teeth after radiatiin
Thank you! This is why I signed up. I need some recommendations on where to go to get a second opinion. I turned 28 yesterday and don't want to spend the next 50-60 years drinking apple sauce. Where should I go? Anyone in the bay area?

Hook up with your local SPOHNC group
I assume you are at the UCSF Comprehensive Cancer CTR. Have you heard of SPOHNC-Support for people with oral and head and neck cancer? Your chapter meets at your treatment facility every third wenesday from 1:00-2:30, Rm H3805. Daphne Stuart 415-885-7394, daphne.stuart@ucsfmedctr.org

If you have not yet utilized this resource please try them at least once. What a survival story you have to tell. Conversely someone in that group has dealt with the tooth issues and can direct you to the right resources. It's a great networking tool for treatment.

I totally admire your survival instincts and appreciate you posting as it gives me strenght in my own journey.