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#201215 02-08-2022 08:18 PM
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Had throat cancer in 2017 (1" lesion on tonsil). Started with radical neck resection surgery, followed by 8 weeks of concurrent radiation and chemo. All went well for 14 years. Now, a lesion had been found in the gum area of front lower teeth, Squamous cell carcinoma. Doc said that this is a slow moving cancer that will require extensive oral surgery. Proposed removal of cancerous lesions with large margin, also removal of all lower teeth and removal of the front 1/3 of jaw bone. Doc will do a bone graft from my fibula to replace the jaw bone removed. Hopefully, will have dental implants if jaw bone graft is successful. Naturally, this both disappoints me and scares the h.... out of me. Has anyone here gone through similar situation? Thanks in advance.
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Pigdoc #201216 02-09-2022 08:11 PM
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sorry to hear you are dealing with this again. just wanted to reply so you felt someone read your post. I'm in Iowa as well. south central


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
Pigdoc #201217 02-09-2022 08:42 PM
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I have had a similar experience, but over a more protracted period of time. But to explain it will take a couple of posts.

So far you have talked primarily about an oral surgeon/dentist. I guess my first observation, knowing lots of oral surgeons as professionals and friends and lots of ENT head and neck cancer surgeons, I would not let the first group be the primary treater of my cancer. And I would want it done in a multidisciplinary institution where I had more than one doctor on my team. The reasons for this are many, but the main one is that head and neck surgeons do fibula free flaps routinely, oral surgeon's do not. The doctor that did mine had done over a hundred, and mine did not go well. I had complications that required three extensive surgeries within ten days and 5 weeks in the ICU. I was lucky to have it done in a place where all that was supported by a team of others besides the surgeon, as things got very complicated very fast for reasons not pertinent to your post. Just believe that they can.

Most of the time any cancer that invades the boney structures of what I assume is only the mandible, they do not require taking all your teeth out as it is only rarely bi lateral. So the reason for removing all of your lower dentition isn't clear. If they don't have to because of underlying issues or something that they believe is going to go wrong in the future, I'm wondering why. If you know the answer to that question, please post it here, I would like to understand it to better answer you. But it seems on the surface of your short post pretty aggressive as an approach.

Mine was the left side of my mandible which when removed had to be replaced by a piece of my fibula from my leg and held together with a titanium custom made bar. The scar on my leg is long and unattractive, but walking is about the same as before. The fibula is not the main load bearing bone of the leg. I already was having other neurological issues that compromised my eating by mouth ability, and using a PEG tube for all my nutrition. So my eating was no different after the whole process. But for you, if they left healthy teeth in healthy bone, you would have a different outcome eating wise. I'd kill to have the ability to enjoy food again. So you should be sure there are absolute solid reasons that your lower dentition has to go, explained to you in detail and get a second opinion for that. Actually for all this.

As to being scared. Congratulations you are totally normal. Its a big deal. At some level it may change your physical appearance, I was not handsome before, but let's just say I'm significantly less so now. In some people it is not very noticeable when done by a doc that is cross trained in plastics which most are. You don't state your age, but the older you are the harder the process is on your body and your ability to rebound from what is at least a 9 hour surgery. The good news is this is a pretty common procedure in the H&N world, and people doing it have lots of experience. I had issues, but it was related to my radiated tissues and not the surgeon or team. Most people get through this with a minimum of things going wrong. I just was not one of them. Dont use me was a standard.

Regarding dental implants, that is an issue for a down the road discussion, though in some cases they put the implants in the bone being moved to the new site, before it is actually put in place. As someone with some reconstructive training, I am less a fan of this idea, as proper placement of the implants really dictates where the ultimate prosthetic restorations will be. Until this is all rebuilt and the bone has grown into the remaining jaw bone, it's hard to know that positioning for sure. Unless they are not going to do crowns but some kind of other appliance, which when you know more we can discuss.

Until our next talk the take away is this. Get a second opinion form a H&N surgeon that has done a lot of these. Make sure that you understand the procedure in detail and what the ultimate outcome is that they expect to achieve. Know that with an experienced person, this is a relatively common and often done procedure with positive outcomes. I would be pleased to chat with you about all this as I know lots of people who have been through it and understand what their experience was like and their outcomes, and I have been through it myself. Try to not let this scare you. Easy to say, hard to do. It's a big deal, but you will get through this and life will go on. We will be here for you as you deal with this, and you can get some more answers here when you post more details, or at least the right questions to ask to get them from your doctors. We all wish you an easy path through this with a minimum of healing time. Brian


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #201218 02-09-2022 09:55 PM
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My work will be done at the University of Iowa Hospitals, with doctors from ENT department taking the lead, assisted by doctors from their dentistry department.


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Pigdoc #201219 02-09-2022 10:15 PM
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Well that’s a good institution. And it sounds like a great team. I’m still curious about losing all your lower teeth, and if this is the anterior part of your jaw why that’s part of the plan. The cancer must be more involved than the way your first post stated it. Anyway this sounds better than it did after your first post.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Pigdoc #201233 02-18-2022 10:36 PM
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we ended up on the 2nd round of cancer at Mayo clinic. Univ of Iowa was not able to do treatment. So far, he has been cancer free for 1.5 yrs. Wishing you the best. The doctors were great at Univ of Iowa but not experienced with this cancer near his TMJ. He ended up with proton treatment at Mayo.


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
1 member likes this: Tiff
Pigdoc #201289 04-10-2022 08:36 AM
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Update to my surgery: I had the surgery on March 22, a 14h procedure. Went home from hospital on March 30, so glad to be out of hospital.
When I went home: nasal gastric feeding tube for eating, boot on left leg where bone graft was taken from, along with one drain, tracheal tube removed with open stoma, skin graft showing in front of mouth, stitches still in neck flap. Can't talk, can't eat, have to use walker to move around on leg.
Now, April 10: Still wearing boot on left leg, but stitches and drain out and I can walk a bit without walker around house. Skin graft healing well. Lot's of coughing due to drainage, this kept stoma from healing. Doc gave med to increase dry mouth and this has reduced drainage a lot, now not much coughing. Stoma starting to heal, but not done yet. The most frustrating part is not being able to communicate via talking. Sleep was hard to find when I first came home, doc suggested Benadryl and this has helped. Still have to use feeding tube, which is starting to get tiresome.
What I did not realize when I started this was that so many of my normal systems would be interrupted. Ability to eat, ability to talk, ability to walk. ability to sleep.
I appreciate the support and comments from folks on this site, hopefully some of these things return soon. And I have to start thinking about treatments next. Thanks.
Pigdoc


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