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#201514 08-26-2022 07:09 PM
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Vicky1 Offline OP
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Hello! Back again! We've had a day today. We traveled several hours across three states to be seen by an oral surgeon today to have teeth extracted. We ended up deciding to reschedule the removal due to the train being late, and missing our appointment, problems with our insurance and questions about whether or not my dad could be sedated for the removal. I am quite concerned. I don't know if we're doing the right thing. He has broken teeth and tooth roots that the oral surgeon wants to remove. They said hyperbaric chamber treatments don't work, and didn't really give us any sort of idea about what to expect with regards to ORN. I asked and they said its something to think about, and that having diabetes slightly increases the risk. The teeth aren't bothering him right now, but its taken over a year to get in to see these people and I would hate to think about what we would do if dad had a tooth that was hurting. Dad's anxiety went through the roof when they told him he would have to do it under local anesthesia and not general, unless we rescheduled for the extraction to take place in the OR. He doesn't want to feel or see them removing his teeth. I am really concerned for him.

What are the things we should be asking? How do we know if this is a risk we want to take? He's had Stage IV cancer twice, chemo, and 30 rads about 4 years ago now and is quite anxious to have anyone in his mouth.

Last edited by Vicky1; 08-26-2022 07:16 PM.

Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!
Vicky1 #201515 08-28-2022 05:58 AM
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Hello.
I can personally understand and sympathize with your dilemma.
Soon after my stage 4 oral cancer diagnosis in 2015..and brutal full strength radiation & chemo....one of the many side effects was rapid tooth loss..
My teeth literally disintergrated..!!
All that was left were the roots which l obviously wanted removed...however, my Doctor's & Dentist cautioned against having this done.??
They told me there were numerous problems that could occur with surgery.....especially to the bone structure of my jaw.
So...reluctantly, I have kept the roots...and after seven years, they don't bother me...they still sit in my jaw..and according to my dentist..I should just leave them there. ?
My age may have something to do with their suggestions..as l am 77 years old...and l understand at my age...anesthesia is not advisable?
Whatever you decide...Good Luck to you. !!

Last edited by exiledbrit; 08-28-2022 06:02 AM.

KITTY CAT.
exiledbrit #201516 08-28-2022 05:50 PM
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Vicky1 Offline OP
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Thank you for taking the time to respond. My dad s 68, so not much younger than you. It makes me feel better to know that you've gone 7 years with no trouble from your tooth roots. I notice you're from MA. That's where we go for treatment, and where this oral surgeon is. Small world. smile I just don't know what to do. The dentist, and the oral surgeon said its best to remove them, but my dad's otolaryngologist told him if they don't bother him, to leave it alone. I trust the otolaryngologist more, as he has done three surgeries on my dad and I know he knows all of the details of my dad's cancer journey and I know he wouldn't knowingly do anything to make his situation worse. But, he recommended this oral surgeon and said he works on people who've had head and neck cancer when we told him Dad lost a tooth and broke another. I don't want to risk it if we don't have to, but it's hard to know who to believe when different specialists are saying different things.

Last edited by Vicky1; 08-28-2022 06:09 PM.

Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!
Vicky1 #201518 09-10-2022 03:21 AM
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Hello again.
Having re-read your previous post...l was curious to know if you had made any decisions regarding your father's dental work.. ?

Last edited by exiledbrit; 09-10-2022 04:15 AM. Reason: Misspelled a word.

KITTY CAT.
exiledbrit #201521 09-15-2022 04:03 PM
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Vicky1 Offline OP
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Hello again! Thank you for asking. So far, they rescheduled it, and we've postponed the surgery again. We're going to talk to his otolaryngologist again when we see him in October. I don't feel any more confident about that decision than I did before. Thankfully, the teeth aren't causing him pain or problems at this very moment, so it's not super urgent they get fixed without having a thorough understanding of what we're doing... I suppose. I wish I knew what to do.


Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!
Vicky1 #201522 09-17-2022 03:49 AM
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Hello again.
Having read through my prior comments, l realise l had forgotten to ask if you were considering having a dentist eventually replace your father's teeth. ?
Unfortunately in my case....due to the possible serious effects of anesthesia/sedation...implants were out of the question.
My only option was dentures..ugh.!!
Nevertheless....and reluctantly...l had my dentist provide me with a very nice set of both up & down.
Unfortunately...having an abundance of mouth scar tissue due to the radical cancer treatments. .( l was stage 4)..gradually..overtime, my overall mouth tissue had changed and moved..
So..within a few months..my dentist had to alter my dentures due to them becoming loose and painful..
Each week or so...a tweak here, and a tweak there...which never seemed to work...very frustrating.!!!
I must add however.. even with all that adjusting to both original dentures....chewing was an absolute chore...l could eat very little in the way if solid food..
Those television ad's claiming that using certain denture glues/adhesives will enable you to eat normally...even crunch an apple are completely false.....well..in my case they are.
So..after a year of ongoing frustration...l had my dentist convince me upon replacing them with what he laughingly described as the 'Cadillac of false teeth'...which sadly for me, was not the case.
Unfortunately...this second set of dentures have not solved the problem..
All in all...it has been a wasted journey...not to mention an expensive one.
Come to think of it...my dentist would make a great used car salesman...if he ever needs a second job.. Lol. !!!
I'm sorry to sound so negative...hopefully you will have a much better experience ..

Good luck...

Last edited by exiledbrit; 09-17-2022 04:17 AM. Reason: Missed a word.

KITTY CAT.
exiledbrit #201523 09-18-2022 06:19 PM
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I used to be in dentistry at a dental school. dentures should be a last choice as even in healthy people, the bone wears down and dentures will not continue to fit over time. sorry you have had this experience but i think many think it's the easy way....not at all.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Vicky1 #201528 09-26-2022 05:05 AM
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Reading your post l am reminded of that old adage...
" Everything to lose...and nothing to gain"
Personally...l am glad l chose not to have my roots removed.


KITTY CAT.
exiledbrit #201556 10-20-2022 02:34 PM
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I just joined and logged on to this site and am amazed to read the discussion about the very things I am struggling to understand.
Teeth disintegrating and I am a 28 year cancer survivor, wondering what to do about my mouth. Travelled 10 hours from home (small village in Canada)this week after waiting a year to see an oncology specialist, and getting a last minute cancellation appointment. Im 73 and my partner could drive me there in time. Accommodation very pricey. But did not get help or information that I wanted.
Teeth are breaking apart, a front incisor is half in, half gone, one was taken out years ago because I didn’tknow about that danger, an neither did small town dentist. I think I look like a bag lady, but I do see the wisdom of not removing anything, because ORN can be pretty wicked, I have read articles on studies from China.
Am wondering now, as long as pain is not a prevalent issue, if gentle mouth assistance such as with herbal remedies, and some Ph balancing can keep the gums and teeth stable. And I have found that every time I get some dental work done, something else goes wrong. I am 72 now so my teeth can bear to be sort of shabby, I think.

DebraB103 #201559 10-22-2022 03:24 AM
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Good evenings/ mornings whenever 🙂 it is. Lol

I'm a 25 year survivor. . . Diagnosis at 14 yrs of age. Mucoepidermoid carcinoma of the parotid gland. It was about 2 inches of tumor attached to the base of my left jaw. Had subsequent radiation (I'll find my ppwk shortly) with a good bit more than they give now from what I understand . Now I too have dental issues and I'm only 39. . . I'm not excited to loose all my teeth, but they just keep falling apart no matter how my manners of dental hygiene are mounted. It sucks flat out...I am so disheartened to hear of others with this as a long term side effect. I am comfortable knowing I am not alone.....but I'd rather not have any one experience this if at all possible, but alas we've been dealing with cancer for a long time now... Hopefully you and yours stay well . I'm around for some words if anyone wants to talk. 😺


RemmyP
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