My dentist has been monitoring a growth in my right jaw for months. He first told me to change my toothpaste and mouthwash, then prescribed medicated mouth wash, then steroids which I had to stop taking because I have diabetes and it was spiking my sugar. Three weeks ago I had two punch biopsy’s taken out of my right lower jaw. After the first week I got an update saying the pathologist is sending my biopsy to a specialist for suspected cancer. I’ve been waiting… today the doctor called and canceled our an appointment and scheduled it for another two weeks out saying that the results are not ready and won’t be. I’m freaking out and wonder if anyone else had to wait this long for results?

Hello Johnny 1985,

Welcome to the forums, and sorry to hear you are experiencing a possible cancer scare.

My cancer diagnosis pathology report took almost 3 weeks, as I recall. I believe my biopsy was like Dec 15 and the doctor called me January 2nd.

That was done a Comprehensive Cancer Center (CCC) hospital, with in house pathology.

It seems a tad odd they would the say the pathologist was sending it to another "specialist" and then tell you it was because they suspected cancer. Sorry for that extra layer of anxiety.

Seems like if they wanted to hold of an a questionable diagnosis they would not bother telling you anything until it was definitive.

Here is hoping the "specialist" can say it is something besides cancer.

5 years before my cancer diagnosis, the oral surgeon who took my first ever biopsy, he was himself an oral cancer survivor, whom his regular dentist found his jaw cancer on a regular dental X-Ray for regular periodic dental maintenance.

Anyway that Oral Surgeon, who had his own stand alone medical practice, was insistent that my biopsy tissue sample be sent to a very specific oral pathology center, he didn't care if my insurance would pay or not, it was this one or nothing. (Apparently he had bad experiences with other pathology labs, and new this other one from his personal cancer experience and his professional practice experience.)

I was like, sure Doc, whatever you say, we have a few extra nickels to rub together, and it wasn't going to be massively expensive even in worse case scenario if we had to pay it all out of pocket. (Our insurance ended up covering it just fine).

He did not think the small white lesion was anything to be concerned about, but did it as it had not healed in a few months and had already been past the standard 2-3 weeks, if it doesn't heal biopsy it rule of thumb.

This highly regarded pathology lab, sent the report back and it said the tissue contained moderate epithelial dysplasia, with a whole bunch of diagnostic descriptions and justifications.

That 1st oral surgeon then sent me out to another oral surgeon who specialized in cancer and pre-cancerous conditions.

If you are in the US, I would start researching your nearest Comprehensive Cancer Center (CCC) and maybe even call their patient coordinators now (assuming you are not currently being treated at a CCC if they are sending the pathology out for a second opinion...) and tell them what is going on to kind of grease the skids a little in preparation for the biopsy report, which if they are saying maybe is cancer, and are doing an in house 2nd opinion, you may want your own 3rd opinion even if "the specialist" says it is NOT cancer.

If it is something that is potentially pre-cancerous, I'd still see if a CCC could get you set up as an established patient.

The CCC that found my cancer is a fine institution, and the best one in my state, but there is a closer one to me in our neighboring state, that has a much stronger oral cancer program, more depth of field, and access to truly world class technology, expertise, research, and treatments.

My CCC Oral surgeon who did the 2nd biopsy that found the cancer, when he called me to tell me the lesion, that he also did not suspect was anything to be worried about, was actually cancer, he was very gracious and happy to refer me out to this other Hospital system. He was going to have me do a consult with his in house ENT Oncology Surgeon to get wider margins around the tumor scar and scope my throat and all that, and I said if it was all right, I had already in my mind decided if that I ever received an actual oral cancer diagnosis I'd seek treatment at this other place.

Thankfully I was able to meet with the new hospitals Oncology ENT surgeon I think within 48 hours of that phone call.

One of the first things he did was send for the pathology cassettes (slides or whatever they are called, the fixed specimens...) so that THEIR in house pathology could lay eyes on the tissue and see for themselves what they thought before scheduling me for general surgery for a (very) partial glossectomy.

The tissue was sent to this other CCC's pathology lab, and they concurred with the micro-invasive squamous cell carcinoma diagnosis. I think I had to wait like 45 days for the surgery to be scheduled. That was a LONNNNNNG 45 days.

Sorry the waiting sucks, the not knowing sucks, but as many of the OCF veterans around here will remind us "It's not cancer until it's cancer", and while they rattled your nerves telling you they are sending it to someone else because they think it likely is, they still have not given you the definitive diagnosis yet.

Again, if I were you, I'd be like if this is such a photo finish pathology call, let's get a CCC pathologist and CCC Oral Surgeon or ENT Surgeon for a second opinion, and to follow you closely if it's something other than a totally benign condition.

The CCC may even decide to order imagery or to do another type of biopsy in order to make a diagnosis.

I hope that helps, and that those options are available to you and are convenient enough to make happen.

Best wishes,

Sincerely,

Chris

Thanks for the reply and thanks for the kind words. I’m a fully disabled army veteran. I get a large majority of my hospital care through the VA Hospital Shreveport Louisiana, I live in a small town in north Texas. The way I found out about the referral from the in house pathologist to the oral pathologist specialist, was I got a notification on my medical records. I opened the email and read the notes. The record only stated consultation to oral pathologist and suspected cancer please expedite. Final report to follow after consultation. My initial dentist really didn’t think it was anything serious it took months for him to send me to an oral surgeon. Now I’m feeling like it should have happened sooner. I will look up the ccc, and maybe get a second opinion if the biopsy ever comes back. Thanks again for the reply!

Hello Johnny1985,

Semper Fidelis Army guy…USMC guy here.

MD Anderson in Houston TX is likely the worlds best CCC, especially for oral.

I know TX is a huge state, but put it this way, if my cancer was ever some rare or exotic thing, I’d be seeing about medical travel to TX to get treatment there.

That makes sense of your VA records notes being how they “half notified” you.

I was not able to get worked up through the VA as I am not 100%, and don’t qualify for dental, but I believe my VA dermatologist could have referred me out to a non-VA oral surgeon and through the “community care” or whatever it’s called program had it covered via the VA.

It’s possible, just trickier.

You may want to reach out to a CCC and ask them if they have a VA liason or are familiar with using the community care and trying to figure that out.

The VA can be great, I was able to see the UC San Diego Chief of Neurosurgery at the VA in La Jolla CA a decade ago, and that was in the normal VA appointment process. He was just my neurosurgery consult right there in the VA Hospital. I was amazed!

UCSD San Diego and VA San Diego share a medical campus there in La Jolla.


Since then my primary care doctor in the VA seems to change annually…but I have had the same dermatologist for the past 6 years.

It’s funny as the first biopsies my VA dermatologist did ended up being sent to my states flagship teaching hospital pathology as the VA did not at that time have a regional pathologist on staff. That ended up being the same CCC and pathology department that would diagnose my tongue cancer later through the civilian system.

Although this CCC did not have an oral pathologist (another reason I moved to the nearer CCC) either, and I had actually asked about having my biopsies sent to the oral pathology lab my first oral surgeon had insisted on using. They could have sent it for a second opinion AFTER their in house CCC pathology department had issued their report.

But it came back cancer, and I felt an error towards over-diagnosis was unlikely and better then an under-diagnosis and missing an early opportunity for early treatment as it’d get me into treatment as an established cancer patient early.

Since then though I believe all my post cancer diagnoses pathologist have not been oral pathologist, although my current CCC has oral pathologist on staff, and actually has the lady who is one of the chief oral pathologists of the first oral pathology lab, literally authored one of the top oral pathology textbooks, and signed my initial oral pathology report when it was potentially pre-cancerous dysplasia:

My current CCC ENT Surgeon knows her well and teaches with her and works with her, but had 100% confidence in the regular pathologist (BOTH of them CCC pathologists) getting my case right, and he is a DMD/MD who started in Dentistry to Oral Surgery to ENT to Oncology ENT sub-specialization.

So it’s funny it has only been my first biopsy that went to oral pathology, at least in terms of who signed the pathology report, and for the later biopsies there are no notes indicating consultation with an oral pathologist.

I believe my CCC has it streamlined were their regular pathologist makes the call for clear cut cases, and then if something is iffy they consult with oral pathologist, but still all in house in the same lab system. I was a bit surprised they did it that way.



This past year my skin (not tongue) biopsies were sent to a VA pathologist as they recently hired a regional pathologist.

So now the situation is a bit more understandable to me.

All of my oral surgery stuff was worked up outside the VA.

I probably could, now with a cancer diagnosis, get treated someway via the VA but we have good regiular insurance too.

I do remember that my first oral surgery consult was a wierd tricky dance just between medical and dental insurance.

Once the biopsy was done it kicked over to the medical insurance, but getting to the oral surgeon initially was …odd.

So the VA system adds another layer of complexity.

But I think they have greatly improved the programs allowing you access to care outside the VA, especially for complex issues.

A veteran service agency may be able to help you figure out how to go about using those benefits and arranging transportation and such.

Good luck, best wishes, keep the faith and please keep us up to speed on how things work out for you.

Sincerely,

Chris

I spoke to a VA patient advocate today i will be able to work with MD Anderson, if I get a diagnosis. Everything is hinged on the results of the consultation. I asked the patient advocate about the timeframe for the consultation, he called around and said the are doing additional tests and stains and there is no timeframe just be patient. I hate when they say that, but I guess it’s the only thing to do.