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,

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.

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

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?