Hello GoldCoastCancer,

Welcome to the forums, and I am sorry about your husbands diagnosis.

Sorry I can't speak to your husbands situation. I am glad he was doing well and hope he has continued to improve, and even more rapidly and that the swelling goes down

You may want to do a search in the forum search box in the upper right hand corner of the screen, and then find someone who posted about a scenarios similar to your husband's and send them a private message directly (by clicking or right clicking on their username) .

That may result in their email getting a notification and them getting back to you.

As it is, just waiting on someone who was in that same situation, to browse through the new forum posts...you may be waiting a while.

Best wishes,

CQ

Hello Sam,

Welcome to the forums.

I am doing a lot of reading between the lines in your short post, but...

It sounds like you have a white lesion on your tongue, they did a CT, found it asymmetric, and maybe swelling, you then were prescribed 15 days penicillin.

You make no mention of biopsy.

My initial leukoplakia (fancy word for white lesion) on my right lateral tongue found by my dentist, who INSISTED ADAMANTLY that I come back in 3 weeks for a quick visual recheck, and then INSISTED I go see an oral surgeon.

Oral surgeon did not think much of the small end of a pencil, pencil eraser sized (maybe a tad bigger, smaller than a dime though) white spot, but said if it was still there in a few more weeks he'd schedule biopsy, only because that is the standard of care for a non-healing white or red lesion on the tongue or mouth not otherwise DEFINITIVELY identified as something benign, which usually you can't do without a biopsy anyway.

My initial biopsy came back, and the oral surgeon was greatly surprised that the innocent looking little white spot came back as having shown moderate epithelial dysplasia out to the borders of the biopsy sample.

From there he referred me out to another oral surgeon who was specialized in oral cancers for annual follow up, as moderate epithelial dysplasia is a "potentially precancerous condition".

I was pretty much committed to annual follow ups for life, just to have a well trained expert keeping tabs, in case they should ever spot something before I did.

About five years after this annual follow up I then noticed the area developed a small pimple protrusion, pretty much right where the old scar was, called my 3rd Oral Cancer Surgeon (actually used patient portal to send text message), and he set up an appointment to see me half way through my regular annual visit schedule. We did not biopsy it again right away, as again it LOOKED like nothing angry or scary. Surgeon could have done it then, I should have said go ahead and re-biopsy it then, even though he said he would be doing it just to reassure me as he did not think it was anything to be concerned about. I did not have my wife with me to drive, and was unsure of what kind of shape I'd be in. I just wasn't expecting to do it in the office, same day, as my other oral surgeon scheduled it out in a big process.

All my cancer oral surgeons have now made it clear to me that at any point they can knock out a quick biopsy on demand at any of my follow up visits.

Anyway we waited 3 months to see him again, with the caveat if anything changed he'd get me in ASAP to biopsy it right away.

It was a little more sore the following couple days after he had prodded it with a cotton swab, and I decided no matter what on my next visit I'd ask him to go ahead and re-biopsy that pustule.

It came back microinvasive squamous cell carcinoma (and more dysplasia).

The margins were not great, so he wanted me to see an ENT surgeon to schedule a follow up partial glossectomy and throat scope, and I asked to be referred out to another system at another comprehensive cancer center, with a stronger oral cancer/head and neck cancer program and it was closer drive.

The pathology on my partial glossectomy came back finding no further cancer, but more dysplasia. The CT and MRI study (was for my brain for an unrelated issue, my ENT surgeon took a gander at that before the partial glossectomy, but it wasn't focused in on the tongue and throat) for me was after they found the cancer on a follow up white spot biopsy.


ALL OF THAT TO SAY.....Biopsy is the gold standard.

If that white lesion has not been biopsied by this point, if I were you I'd be demanding a biopsy (again unless they've looked at it and said it was something like your rough tooth crown rubbing on it...and even then I'd still probably ask about biopsying it).

None of the other tests they can do can with the same accuracy and precision tell you what on earth is going on in that tissue, apart from a board certified pathologist staring at the cells in a microscope with all his fancy stains and processes.

Most leukoplakias are not dysplastic.

Most dysplastic leukoplakia's do not turn into cancer. Now that I've been diagnosed as having developed cancer, I will absolutely being seeing a specialist annually, even after my 5 years of "no further evidence of disease" follow ups.

But I am one of many folks on here that kept drawing the short straws.

Take away here is you are your own health advocate (or need to be).

I've had a few dentists, and oral surgeons over the past 5 years say it was nothing to worry about....

That ALL changed when that pathology report came back with the micron invasive squamous cell carcinoma.

Found very early, which is what the whole point of all of this is, if you have a high risk lesion, or even one that just might be, to be vigilant (without being paranoid) and following up.

If you have not had it biopsied, you can't know if it is dysplastic.

Regardless, so long as you have it, keep close tabs on it, take pictures if you can, and just pay attention. If anything changes, keep calling back to your doctor.

If they can't explain, keep asking questions.

I hope the above makes sense, and may help you ask some questions on your path forward as you speak with your doctor(s).

Best wishes, and good luck!

I would love to know if anyone else has had tongue lesions and the after CT scan showed fullness asymetry, he made you do 15 days of penicillin and feels no more images needed as "I wont take you in ER for a white spot?!)

Hello Mchaperon,

Glad you were able to find someone to gift you enough to schedule a biopsy.

I hope it comes back completely benign for you, and the costs are manageable for you.

I believe there is another forum on here for insurance and paying for treatment and financial resources you can read through for ideas.

Here, I found the forum, lets see if this link works: https://oralcancersupport.org/forums/ubbthreads.php/forums/10/1/insurance-and-financial-forum


Social Media and GoFundMe type drives may be an option.

I know the initial oral biopsy thing is sometimes inititally in a gray area, for example the VA doesn't have in house oral surgeons to do biopsies, and the dental vs. medical insurance coverage questions are confusing.

Best wishes,

R/
CQ

Hello Holly,

Welcome to the OCF Forums.

Glad to hear they believe they got all the cancer.

Sorry that your tongue is now numb and you have diminished taste.

Being told no need for any follow ups sounds odd to me.

I don't know about Oral Squamous Cell Carcinoma (OSCC) on the gums, but if they took bone and molars that sounds much more involved than my superficial "microinvasive" OSCC on my tongue.

My cancer was confined to just the outer few layers of "skin" on the tongue just barely penetrating the basement membrane into the next layers of tissue below and small in diameter too.

The way it was initially explained to me, they don't even consider you cancer free, until something like 5 years of "no evidence of disease", and even then there are no guarantees, but the odds are much better.

Biggest initial risk of recurrence is that first year, the way it was explained to me.

Again I have not read much about gums (or discussed gums with my Comprehensive Cancer Center (CCC) Cancer ENT Surgeon at length like I have my tongue) so maybe that's a big difference.

I'd ask if you were treated at a Comprehensive Cancer Center or if your surgeon and medical team was at least one that specializes in cancer?

For me it was follow up every two months the first year, then now my second year I am every 2-3 months. We've discussed biopsying some new white spots (leukoplakias), and that in my partial glossectomy they found no further cancer than what my 2nd biopsy found, they did find more epithelial dysplasia, which I was followed annually for like 4 or 5 years before getting re-biopsied when it began getting sore, and they found cancer.

My new spots aren't sore, and they aren't firm, but neither was my original lesion that was per-cancerous.

I see my surgeon again something like June 24th, I'll probably request he biopsy the one spot the might be getting a tad larger. I have some fleeting and minor cramping type pain that is generalized and not local to a particular lesion, that the surgeon seems confident is more from the trauma done to the tongue in surgery and the scar tissue formation, but we are keeping close tabs.

My surgeon's primary criteria in my situation seems to be any change in sensation, pain, if the lesions get firm, change significantly in appearance. Some of it may just be scar tissue from suture holes, but two of the spots seem too far away from the scar of the surgery for that to make sense. He's happy to biopsy any/all of it if I am concerned, but he isn't overly concerned about them, as he is watching me closely and seeing me regularly.

He explained some patients get a surgery and they just kind of ignore everything therafter and miss appointments, and only come back in when something is terribly wrong.

So I'd say if you notice any changes get a CCC on speed dial and get a 2nd opinion as soon as possible.

I'd suggest asking your doctor(s) to explain why they don't think any further follow up is necessary. Perhaps that meant follow up for healing from your more involved surgery and not for the cancer itself? Seems like having jawbone removed the recovery and learning to eat and all that again would be the better part of year vs. some stitches in your tongue out in a couple months for a very partial glossectomy. I'd ask them to explain their position to your satisfaction.

I'd imagine if you requested it, they'd pencil you in, and if they refuse your request you could seek a 2nd opinion elsewhere.

Heck, like I said, even before I ever developed cancer, I was followed annually by a cancer specializing oral surgeon with the "potentially precancerous" lesion, that was when I had roughly a 10-15% chance of moderate epithelial dysplasia converting to OSCC.

My 3rd oral surgeon who did my 2nd biopsy, which found cancer, did tell me the previous visit, he did not think it was anything, and I could probably just be followed by my dentist.

The first oral surgeon who was not a cancer guy, basically said I needed to see a cancer oral surgeon annually from there on out, it was out of his specialty. The 2nd one moved out of the area, and I asked about going back to the first oral surgeon and he said something like, "do you want to be followed by someone who sees maybe a handful of these things in his entire career, and does mostly impacted molar, broken tooth extractions, etc...or someone that sees tens or hundreds of oral cancer cases every year"...and I took his point.

That being said, even "looking at it" is no test. There are obviously highly suspicious lesions that are very likely cancer, but the whole point is to catch it before it looks HORRIBLE and has progressed needlessly.

So my cancer finding oral surgeon, was shocked when the pathology report came back cancerous.

I don't think he will be advising any patients with histories of moderate dysplasia to just follow up with their dentists anymore (and my new dentist, not the one who was OUTSTANDING who found the original white lesion and taught me and impressed on my the critical importance of taking this white spot very seriously she left that dental practice, the newer lady, and older lady dentist said that the pimple was nothing to worry about....that was after 4 weeks of it not healing...and that ended up being cancer....some folks are a bit too chill about following up on potentially precancerous lesions. It seems older school dentists may not be as keenly trained for cancer screening as the better dentists entering practice in recent decades.

(And I keep telling myself, biopsy these other lesions...you can't know if you don't biopsy it...I definitely am not waiting for it to get ugly looking or ignore any changes in symptoms).

So even not following dysplasia closely, at least annually, seems foolish.

In your case One year and a few months out of cancer surgery to say, yep, "we are good here, no need to see you again" has me scratching my head as well.

I'll tell you this much, if my CCC ENT Cancer surgeon ever even remotely suggest "maybe we should do _______", I'll be doing EXACTLY THAT, and anything MORE he thinks is reasonable.

So if he says yeah, let's send that to pathology, I'll offer ZERO resistance.

Best wishes Holly, I hope you can get your doctor(s) to explain things to your satisfaction and continue to get excellent medical care.

Maybe some OCF Folks with gum cancer experience or knowledge can chime in, but again, please keep communicating with your medical team and ask clarifying questions and develop that relationship.

R/
CQ

Hello. I am new to this group. I had surgery Jan. 2024 to remove Squamous cell carcinoma on my lower gum. I lost two molars and some jawbone and was left with a numb tongue and diminished taste. Was told they got all the cancer. At my 1 year postop, I was told I need no more follow up. This doesn't sound right to me. Any thoughts?

Update, an angel has gifted me enough to recieve the biopsy and finance the rest

Hello,

My mother (77) was diagnosed with SCC a couple of months ago likely due to HPV infection, and based on visual inspection, estimated she’d need to take most of her lower jaw in a mandibulectomy. It was originally going to be fibula free flap but apparently they’ll be needing to use her arm instead.

It’s been a difficult process since, first getting her to internalize her diagnosis, and now to get her to follow through with surgery. She just postponed it for the second time, and won’t admit that she’s just scared at what she’ll have to go through. She’s also really deep into alternative healthy and conspiracy theorism, and believes that in putting off her surgery, she can potentailly use her alternative therap(ies) to shrink the tumor.

At this point my family and I are just dismayed and disappointed. We’ve told her the risks of waiting, and how painful not going through with this will be for her, as bad as surgery and recovery will be. I’ve asked her if she’s willing to bet her her life on her alternative beliefs. We’ve convinced her to schedule it back on once, but now, with 5 days to go, she’s changing her mind again.

I’ve had concerns about her QoL following this procedure if she does actually go through with this, not that there’s an option. Between them having to use her arm bone instead, and what I’ve heard from a friend who’s a speech pathologist (who says she doesn’t know she’d elect to have the surgery if it were her), I don’t know what to expect. Will she never be able to chew normally again? Will she ever be able to get dental implants for her bottom teeth? Is a temporary prosthesis an option? I just want a realistic expectation of, assuming things otherwise go well, her chances at a normal ability to speak and chew again (and if so, when).

Anyway, any input or similar experiences would be super appreciated.

Sooo I'm pretty sure and my dentist is pretty sure but I need an oral biopsy i can't afford. Any resources or support welcomed. Idk what I'm doing. Please point me in the right direction (((holding back tears)))

Hi John,

Welcome to OCF and thank you for sharing your story. Sounds like you found the cancer early and got it all in surgery. Great news to not need radiation or chemo. Please keep us up to date as you recover and feel free to reach out with any questions.

Stay safe and keep the faith,
Nels

Hi all, im John. In March I had a biopsy of my tongue and on April 1st of all days I was told that I had cancer. I was one of the lucky ones, after a partial glossectomy and a neck dissection, my Dr cleared me of any further treatment. The cancer was localized to the tongue only. Its been one whirlwind of a month and im currently recovering from the surgery of it all. Im 2 weeks post op as of this posting. I want to learn more, hear other's stories and help out where I can.

Dan,

My treatment was over ten years ago and was a little higher up (on the tongue) - I've not had coughing due to throat issues, but I have had some voice problems.

My nose does run a little while I eat, not a lot, but enough to need a tissue.

I've always blamed the radiation and the feeding tube I had down my throat for a few weeks.

Sean

Back again after a few years of pursuing all options for swallowing safely…recreational eating as one doctor called it. Unfortunately whatever started to deteriorate in 2022 when I first wrote about it has continued. My husband began an intensive speech therapy program followed by esophageal dilations, and a cracopharyngeal myotomy. Last year it became clear that these interventions weren’t going to work at this stage of his Dysphagia.

He has been on a peg tube and totally reliant on formula for nutrition since 2022. Over the last year he has been to the ER 6 x for aspiration pneumonia. What started as an attempt to resume swallowing function in 2022 has turned into a search for identifying the cause of the aspiration event and finding ways of preventing it from happening again. Each hospitalization has been a learning experience. He learned to sleep on a slant, pace his feedings, takes antacids..the list goes on yet no definitive cause has been identified. Sometimes it looks like a buildup of saliva in his throat and at others it appears to be regurgitation. The most recent option doctors offered is to convert from a g-tube to a g/j tube. We have no information on how effective this may be or what additional lifestyle changes will be needed.

Does anyone have experience with this method of feeding?