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!

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

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!

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?

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

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