Hi Joanne T,

Welcome to the OCF family. I am so sorry to read of the challenge you and your husband face. Glad you found this forum early. Please keep us up to date on your husband's treatment and recovery. It will certainly help others and we hope we can help you.

Stay safe and keep the faith,
Nels

14 years post treatment and very grateful to be cancer free I do struggle with some post radiation issues. Dry mouth was low on the list until recently. Not sure why but it got bad recently during sleep. Like waking up 100% dry. Very bad for teeth. I came across a product designed for snoring and (even though I don't snore) I decided to try it. It has helped me SO much. It's a special kind of tape called Adellina Premium Tape. Like $17 on Amazon for 30 patches. Right before bed I just peel a piece off and put it on my closed mouth. I can't even tell it's there and I sleep all night breathing through my nose. Zero dry mouth. In the morning it comes off with no pain or even discomfort. I hope this helps someone. The OCF saved my life 14 years ago.

Peace

Hi, for what it's worth, my husband also had a missed diagnosis although the time frame was a tad shorter - 18 months. He was diagnosed three weeks go and went through CT scans and a PET scan and no spread of the cancer. Point being, don't despair - every case is different and it may still be local. Either way, please get the biopsy and necessary treatment asap because knowing is better than not knowing. Getting treatment started soon is the most important thing!

HI all -
Just wanted to introduce myself. My husband has just had surgery to re-section the mandible, remove the tumor, and remove lymph nodes. He was diagnosed via biopsy about three weeks ago, and it has been a whirlwind as I'm sure you all know. He is still in the hospital recovering. The surgeon hasn't told us yet whether he will need radiation - depends on the pathology. Sounds like we won't know for a few more days. No questions yet for this group but I look forward to being part of this community of survivors and caregivers.

Also BellaB,

I sent you a private message with the CCC nearest you and the one that is one of the best in the worlds that is the 13 hour drive away. Sorry I needed to edit my messages and remove the mentions of doctors and medical institutions (yikes, looks like I have some of my old posts violating that rule too, and not sure if I can still edit the older ones--oops, dangit.)

The link to the NCI's CCC list is there above and here https://www.cancer.gov/research/infrastructure/cancer-centers (the comprehensive CC's in addition to doing research are active in treating patients..you can read about the the types of cancer centers there that are NCI listed on that link.

There is one in St. Louis that you could call and see about getting triaged for a consultation

I think you can see private messages sent to you by clicking on the letter envelope shaped icon towards the upper right of the screen to the left of your screen name.


Sorry I did not ask my Dr. today about specialists for that type in St. Louis, seemed a tad awkward for me to ask, and although I have a great rapport with him, he was running behind from other late patients due to weather and was trying to catch up.

Best wishes as you make your next appointments and take each day at a time.

R/
CQ

Hello BellaB,

You should have lots of hope yet still, don't disparage just because it is cancer. Not the results any of us would want, but you have lots of good options and well trained medical professionals available.

I would start by saying it is not necessarily the case it is a situation of misdiagnosis and missing the cancer (unless your doctors have said as much). There are multiple conditions in the oral cavity that are pre-cancerous and are what they call "potentially malignant disorders" or what they used to more commonly call pre-cancerous conditions.

So my tongue is a good example. Dentist found a white lesion that didn't go way, like 5 years ago. She had me come back in two weeks, it was still there, she gave me a consultation to my first oral surgeon. Was delayed getting an appointment due to Covid pandemic. I think it was 6 months or so later when I saw the oral surgeon. He did my first biopsy on the white patch (fancy word is leukoplakia).

The biopsy indicated the tissue contained cells and sections of tissue that were diagnosed as having moderate epithelial dysplasia.

Oral epithelial dysplasia is a potentially malignant disorder. It doesn't mean that these tissues were destined to irrefutably become cancerous, just that the relative risk of a cancer arising in that area of tissue is significantly higher than the general population and healthy tissue elsewhere in my particular mouth.

From what I've read chronic inflammation is also considered a potentially cancer triggering situation.

So you can have what was a benign inflammation or disease state, over time progress into pre-cancerous (or potentially pre cancerous) conditions, and that can migrate into cancer.

Comprehensive Cancer Center (CCC).

."

https://www.cancer.gov/research/infrastructure/cancer-centers

After 5 years ex smoker do I still need annual low dose ct scan of the lungs.

Thank you, Chris. I am just in shock and disbelief. I am scared because it was misdiagnosed as pericoronitis 2 years ago. My surgeon did not feel any palpable nodes but I am just clinging to any hope. What does CCC mean? Cancer center? Which would be 13 hours south? Texas?

I don't know if my first oral surgeon had the exact same type as that, but he did have a chunk of his jaw removed for cancer in the bone there. (link removed to my former Dr.'s practice per forum etiquette guide)

If it is rare as the first pop up that came up, you may want to consider a bit of travel.

You have one of the top centers in the world about a 13 hour drive to your south (Edited to remove the name and link per etiquette guide), I think I've seen full on articles on here mentioning the top ones though, and I can try the PM thing too.

An initial consultation with a local cancer center doesn't commit you to going with them, and they may even recommend a certain sub-specialist elsewhere.

I guess you could endeavor to learn all you can about your specific type, and see which doctors are experienced with it, you could consult with them and see what they say and recommend.

You can start by making those phone calls and asking about getting consultation appointments, you were just diagnosed, you are seeking treatment and are exploring options and deciding on how to proceed.

Hang in there!

Sorry to hear the bad news BellaB.

I think that was the cancer my first oral surgeon had.

St Louis MO?

If so there appears to be only one CCC in the state: https://www.cancer.gov/research/infrastructure/cancer-centers/find (edited to remove the name, you'll have to search for it here, the etiquette guide for the forums asked that we not list doctors names or institutions, I read that years ago, couldn't find, and then just found it...)

Keep the faith! (I guess I could ask my Dr. tomorrow if he knows any good ONC ENT's in St Louis and he may not be willing to go 3rd person name recommendation either, but if he does I can try to send it to you in a private message, I think that would be allowable by the etiquette guide)..

Other factors now may be to see which locations your insurance has either a preferred provider status, or at least sufficient coverage for your situation.

Just a heads up, I got my "pre approval" confirmation letter in the mail I think the week I was back to work after my surgery, and that was with a preferred provider "distinction center". That was with the surgery scheduled like 40 days out (long wait for me).

I had verbal assurances prior approval would be taken care of, but reading the insurance book, they were saying they'd reduce coverage for this that and the the other thing. So I sent them a online request for all the above saying I had been told on the phone yada yada....

Just have to have faith it will be covered in the end if it is a covered procedure (you don't want to cut corners just because the insurance is a hassle) and you have to appeal, appeal, appeal, or whatever.

Even if you don't have insurance or the best of insurance, you may find alternative helps and programs and such.

Did your current doctor(s) have any recommended specialists or facilities?

They schedule like a PET/CT for you already?

Best wishes, and try to keep a positive mental attitude as you figure out your battle plans.

Once diagnosed that 40 day wait to get wider margins was brutal for me...nothing further found then (have a bit of a ridge now I'll be asking about tomorrow). So I never had a PET/CT for staging, as the tumor was just microinvasive into the first layer of tissue and less than a CM in size. I think generally that's usually the next step for staging a PET/CT to visualize the extent of the tumor and look for signs of spread, so they can plan out the future surgeries and such.

I'd be calling around and asking for options/consultations.

I was fortunate and had a triaged appointment with my CCC 48 hours after diagnosis. But then that ~40 day wait. I guess for me PET/CT isn't even likely to light up tumors smaller than a centimeter, at least reliably.

One step, one day at a time.

Again, sorry for the bummer of news, and hoping for some peace for you as you work out the next steps.

R/
CQ

Hello. I didn’t get the news I had wanted or even suspected today. Intraosseous Carcinoma….jaw cancer. I am shocked and in complete disbelief. I don’t know what to do. I am in St. Louis and need to decide on the ent. Any help would be appreciated. Thank you!

Hello BellaB,

Welcome to the forums. Sorry for the unfortunate complications with your gums and the surgeons concern it may be something so nefarious.

The best nugget of advice I gathered (and that I can currently recall) on these forums, regarding waiting on a biopsy result is "it's not cancer--until it is". That is it's natural to be concerned and worried, but try your best not be consumed by anxiety. Even if it turns into being cancer deal with that, IF, and when that comes. Regardless you will want to remain vigilant with after care and follow up. Sometimes non-cancerous conditions can develop into cancer too.

Even if it is cancer, like Nels said the treatments have advanced.

The symptoms vary widely from person to person.

For myself and many others a painless, non-healing lesion. Mine was just small pencil eraser sized white spot. Was just dysplastic tissue on the first biopsy (potentially pre-cancerous condition). Then like 4 or 5 years or so later the same area became sore. That triggered the second biopsy that found cancer.

For me so far, it was just a very minor partial glossectomy (very small chunk of my tongue taken out around the biopsy site to ensure wide margins of non-cancerous tissue).

I have bimonthly follow ups, in fact go back this Wednesday to see the cancer ENT surgeon who did my partial glossectomy.

The Gold standard on any non-healing oral lesion is a biopsy.

You can't tell just by looking at symptoms, or even pictures or physical examinations.

Anything that might be cancer, needs to be biopsied to see if it really is.

My first oral surgeon kind of reluctantly performed the biopsy, suspecting merely non-dysplastic leukoplakia. But the standard of care is if it does not go away in 2 to 3 weeks biopsy it.

He was greatly surprised when the biopsy came back moderate epithelial dysplasia. All that to say is that it's all about the biopsy.

I will say one thing that reading other's experience on this forum has done as instilled in my mind a vigilance to try and keep on top of this disease early and aggressively.

Regarding delaying biopsy and not following up on your symptoms sooner, again it is not cancer until the biopsy says it is (meaning no one can know until you have biopsy results).

I had a similar thought regarding my sitution when my tongue began hurting off and on around May 2023. I made an earlier appointment to see my oral surgeon in like Sept 2023. He could have biopsied it then, and offered to, but I was not expecting to need a ride home etc.. when I went in for the office visit. We opted to wait and see and did another appointment in Dec 2023. Got the biopsy results back like Jan 2 2024, it was in fact an early cancer.

So hindsight being 20/20 I would have pushed to have my lesion biopsied back in like June 2023. May have just been carcinoma-in-situ then. Mine was staged a micro-invasive stage 1. Just a bit past carcinoma-in-situ. For me the outcome probably was not affected that much at all.


Also anxiety is not good for your health or recovery from cancer, so one thing you can try now as you wait is figuring out ways to reduce your stress and anxiety, or how to live and cope and do what you can to reduce your stress/anxiety.

So you if you've done a bunch of reading on the forums and already have a good idea of some of the things you want to apply, you may want to give yourself a break from reading up until you get a diagnosis.

One determination I made after reading on here, was that if my dysplastic lesion ever became cancer, I was committed to going to a Comprehensive Cancer Center (CCC) and one with a high quality oral cancer program.

The oral surgeon who found my cancer was very supportive of me seeking care at a different institution and even recommended a specific surgeon he knew there.

For me, so far, the CCC provider hasn't been super crucial as of yet, but now I am an ESTABLISHED PATIENT, being watched like a hawk.

Should my disease progress and I need Chemo/Radiation I know the multidisciplinary approach of a top notch CCC is right there, and I already have my foot in the door, and that gives me good assurance I am well situated, "armed and equipped for battle" as it were, should the need for further "battle" arise.

Best wishes for good news on the biopsy and resolution of your oral health problems!

Take care,

Chris

I am hoping to get some feed back on Gum Cancer and I am seeking some sort of reassurance as I wait for the biopsy results.
I had the flap of pericoronitis cauterized 2 yrs ago and it grew back. My dentist said that would happen when he did it, the surgeon who biopsied said that would not happen. The area is puffy and there was tissue at the gum line the surgeon said was hard and not infectious.
Maybe I had selective hearing but I didn’t hear the surgeon say much of anything positive afterwards. If it is gum cancer it could have been there for a year or more. Would I have other symptoms? Gum bleeding, lump bleeding, pain of some sort, ear ache?I have none of these I also tested my Saliva PH and it’s 7… not that it means much. Any feedback is appreciated. Anxiety is wrecking me!

Thanks so much for the kind words.

I just keep thinking that if it is cancer, and it was misdiagnosed 2 years ago, it should be well advanced..

Hi Bella B,

Welcome to the OCF forum. I am so sorry for the pain and anxiety you are going through. A biopsy can really play with your mind. But, you are best to get it done so you know. I was diagnosed with Stage 4 tongue cancer in early 2020. Waiting on the biopsy was stressful. I only leaned on family for support because I had not yet learned of this forum.

I am hoping someone who has had a similar experience as you can jump in here. But, what I can tell you, is that I have been active with OCF for over four years and that you are not alone. And, if you do receive a positive result, that treatments are far advanced from years back. I was stage four and they took half my tongue and rebuilt it with flesh from my arm. I can eat, drink, speak, surf, run, ski, etc again. I have the same full life back, plus a cute yet sometimes annoying lisp, and then some. By going through my cancer experience, I was able to deepen my faith and change my life to one of more gratitude and learning to be more present in each day.

Hang in there and please keep us up to date as you continue on this journey.

Stay safe and keep the faith,
Nels

Hello…I am so scared I can’t eat or sleep. It started a couple of years ago with an infected impacted wisdom tooth…pericoronitis. My holistic dentist confirmed and cut the infected flap of and cauterized it leaving a rough edge of gum around the tooth crown. He said it would grow back and I would have to see an oral surgeon for a coronectomy where they remove the crown of the tooth because it’s too dangerous to remove the whole tooth. I put it off and put it off and the flap did grow back. It looked infected again. I saw the dentist again for a cleaning and he just talked about the coronectomy again. I still put it off because I couldn’t / wouldn’t find the time. I went to my other dentist, had another cleaning, talked about the pericoronitis, looked infected, did antibiotics in prep for a surgery consult. The antibiotics didn’t do much of all of anything. 2 years from the original visit I did another round of antibiotics and saw the oral surgeon. He looked in my mouth and said it didn’t look typical. He said I had a mass growing outward from my gum…in addition to the “pericoronitis” and it needed to be biopsied. I thought all along this was just spread of the pericoronitis and the cauterized edge of tissue…but he said it was hard and not soft. He took the biopsy yesterday. He said it was solid…not like it was infection. Also should mention that there is a piece of jaw bone close to the impacted tooth that is gone. He said it could be from infection below. I have a thin neck and he did not find any enlarged lymph nodes. I just turned 60 but am young for my age. I am besides myself with worry and anxiety. I can’t find any stories on here that are similar.

After more research into the topic of implants post radiation, I learned about dental oncology specialists. I live in California and blessed with several very good research universities. Does anybody have any ideas of where and how to get in contact with these folks? I plan on call the radiation oncology department and ask about dental oncology/Oral and Maxillofacial surgery. Make sense?

Hmm i don't no what i'm doing or even doing this right hmm here goes im luke im 32 things are nt great but im holding on gt a partner stepchild i sadly cant have kids😥 and i dont no how long iv had it a few years but i gt that rare ameloblastoma but even rarer were it is its quite large under my cheekbone under my eyesocket the hospital has done a small operation to remove lining or something of that sorts but i was told that they dont want to remove it as for were it is and be risky bloodvessels arteries ect its eaten the back of my upper jar and its sitting in my whole cheek and across my sinuses anyway i gt no one to talk to bwt this so just want to see if anyone gt similiar to me sorry about spelling when i was at school i skipped english class alot 🤣