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#195566 01-04-2018 10:58 AM
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JAM77 Offline OP
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I was diagnosed with nasopharyngeal carcinoma in 94. I was a minor at the time, so I don't have all the specifics. Due to the amount of radiation that I was to receive, I was informed at the time that I would never be able to have oral surgery. As a result, my wisdom teeth (all four) were removed. While I recovered from that surgery, I was on a cocktail of Cisplatin and a gold based chemo (the name of which eludes me at the moment).

After that treatment, I went through daily radiation therapy for 2-3 months. To be honest, I did not really pay attention to the amount of rads I received, and am not sure it is listed in records I have at home. Suffice it to say, I received enough that I was told to not get Xrays for the rest of my life. When I tell doctors this, they usually think I am crazy until they look at my charts. The look on their face when they see the number is unsettling.

I tried keeping up with my dental decay, but was told those issues would not be covered by insurance. My teeth came out of college mostly okay, but started to rapidly deteriorate shorty there after. As a young person new to the work force, I simply was not financially sound enough to keep up with it. It also took me a long time to find a dentist that had worked with cancer patients that had irradiated jaw bones. Most wanted to jump right in to root canals and extractions, even though I explained that couldn't happen. I did occasionally suffer from an abcess, but have not had that occur in over a decade.

Fast forward to today. I did eventually find a dentist that specializes in working with cancer survivors. He does a glue-on rather than post implants. His work is good, and his previousclients are happy. However, at this point I have a total of 6 partial teeth, so I would have to replace them all. The cost will be probably more than 45k when it is all said and done.

They only had other option that I thought I had was to wait until everything was gone and do dentures. That was what they suggested at San Francisco, but it seemed like they just assumed I had no resources to do anything else (and at the time, they were probably right for dental procedures). However, any dentist I have talked to that I liked (even the ones without cancer experience) were hesitant (up to the point of outright rejection) to go that route because of my age (shrinking of the lower jaw with full dentures).

So, I have been saving up to get started, but one issue is that the glue-on solution is temporary. 15 years at best. At my current age, that could mean transitioning to dentures, but it could also mean a repeating heavy expense every decade to a decade and a half. But in doing some research recently, I came across this mandibulectomy. It had never been mentioned. I don't think it was an option when I went through treatment. And since then, I have really only spoken to my GP and dentists. So I'm not sure if I never heard of it because I am not a candidate or because I was not talking with the right people.

I am not looking for a medical opinion from a forum post, but I wouldn't mind some insight. Does anybody see a reason that I would not be a candidate? If it is already off the table, no point in pursuing. Even if I had to do an upper denture, having something solid for the lower jaw would be nice. I always wondered what they would do if I broke my jaw, but the only answer I got during treatment was don't break your jaw.

If this is something I pursue, there are a couple other questions. Can it be covered by medical insurance? Ballpark on cost? Who would I even go see (central Cali). I see some places talking about it, but mostly talking about themselves doing it. They cannot possibly all be the premier specialists in the field.

Thanks.

Last edited by JAM77; 01-04-2018 11:01 AM.
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JAM77 Offline OP
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I don't have speech issues, but I do have swallowing issues. My uvula shrank to virtually non-existant. I have mostly gotten used to the dry mouth, but there are few things I can swallow without taking a drink. If my bites are too small, they stick in my throat and are very difficult to dislodge. If the bites are too big, part of it will lodge in my nasal cavity (uvula too small to block anything).

I did hear about the hyperbaric therapy in the early 2000's, but at that time it was indicated to me that the marrow in my jaw was likely dead too long. However, I got that from a GP. I didn't follow up with a specialist at that time because I was just out of school and had no medical coverage.


NA
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Bless you! My soft pallett is welded in to the back of my throat leaving a very small opening to swallow through so most everything gets hung up. My ENT Dr
Has been stretching a little at a time but this last time it has left everything spewing out my nose....


Survivor since 2006- Stage 4 Nasopharyngeal Carcinoma with metastisis to all nodes in neck
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JAM77,

I feel your pain! Teeth are an important aspect in our appearance, eating function and well being, but I haven't heard of a mandibulectomy just to have Implants, but haven’t fully looked either. I heard of it being done to remove a benign or cancerous tumor, to correct ORN, after which implants may be done during or after this surgery.

I've been without all my teeth since late 2013 after rapid destruction of them after my initial radiation in 2011, and having to wait several years to have HBOT, dental care, due to continuous recurring cancers for three more years. Due to having the extractions, and prior radiation, which amounted too over 200Gy, while most get 70Gy, I developed ORN in 2014, even though I had HBOT twice (60 dives), which was treated conservatively, and finally by invasive surgery.

I had a segmental (full thickness) Mandibulectomy for ORN, with a fibula free flap, in 2016. I didn't have dental implants even though there is new bone, due to the amount of radiation I had, and being vessel depleted on my left side, so they needed my internal mammary artery and vein, and cut the chest open too. I was waiting patiently to fully heal, about a year, but then had a heart attack, so being on blood thinners, other planned reconstructive surgeries were canceled, and any implant/denture procedure at this time.

There is "Jaw in A Day Surgery" similar to what I had minus the implants, first done by my Plastic Surgeon, and their Oral Surgeons in NYC, where they put in new jaw, implants posts, teeth, in the all in one surgery, which otherwise was a multi step process, but as far as I know, it was used in benign tumors.

One of our concerns is prior radiation, and developing ORN, with any extraction, surgery, denture, etc. Your radiation oncologist should be involved with your doctors as far as treatment plan, dosage to each area, I know my doctors are cautious with me, and I don't feel like taking a risk either, and needing another jaw surgery, which btw, can take between 8-12 hours, a week in the hospital in ICU or step down, rehabilitation to regain strength and mobility (I was in a nursing home 2 months), to months of speech and swallow therapy, lip paralysis from the nerve being cut if its not grafted too or need later on for reconstruction to correct.

There is a "partial mandibulectomy" where the jaw where there nerve isn't cut, jaw bone fully cur and removed, which you may be referring too, but I'm not sure of the applicability here.

There is a doctor in miami, maybe elsewhere too now, that developed stem cells to grow jaw bone, but again, not sure if it moved on to oral radiated patients yet, and elsewhere in laboratory studies, drugs to regrow teeth.

I hope this helps.



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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JAM77 Offline OP
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Thanks for your input. As I said, the articles I have found online only describe the procedure in the most basic terms, or are more technical than is of use to me. As for my radio oncologist being involved, he was a single doctor practice and retired years ago. As I have not had a reoccurence, I have not sought out a new one. The oral surgeon that pulled my wisdom teeth prior to radiation is also retired, so his insight only comes from what notes he left in my records. My GP from the time is still practicing, but he has moved. He is really the only involved doctor that is still practicing. Even the eye doctor they sent me to for a baseline is retired.


NA

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