This is my first post here, although I have been lurking since I was diagnosed. I am almost 3 months out from 35 rad treatments for SCC HPV+ of my tongue. I did not have chemo, as I was stage 1. Now, I am MISERABLE! I am in so much more pain now than I was during treatment. I am losing my mind, and was hoping you guys could give me some advice or direction.
About a month ago, my tongue started… EXPAND ▼ developing new ulcers and hurting more. My ear started hurting, and after a visit with the ENT he said it was referred pain from my tongue. By the end of that week my neck was swollen and painful to the touch, I couldn’t eat, I couldn’t talk, and it hurt just to swallow my own spit. Long story short, I was told I had a staph infection in my neck. I was on Augmentin for 17 days. My neck swelling reduced but the tongue ulcers grew together, and some kind of white covering has been taking over the area. The ENT says it’s a scab, and that scabs look very different in your mouth, but is still concerned by the way it is growing. They said I need a biopsy, but plan to wait until after my PET scan results. I am now on Doxycycline for another 10 days.
My scan is in 2 days, but the reading of results will be the next week. I don’t think I can make it that long!! I am in so much pain!! I don’t understand why we need to wait an extra week to do a biopsy. I was told not to take Advil anymore because it can create ulcers, but Advil was the only thing helping my inflammation! Tylenol and Tramadol don’t do anything to touch the pain. The other opioids make me vomit. I have been using so much viscous lidocaine and magic mouthwash that I’ve also been throwing up from swallowing so much. And of course the vomit hurts my mouth more. I also just feel really unwell, and my neck hurts. I use all my strength to just take my dog outside, and then I just lay in bed. I feel like I have been going to all of my different doctors ( oncologist, radiation oncologist, ENT, a second ENT, the hospital, urgent care) and nobody is actually helping me.
Has anyone had this kind of issue after treatment?? I don’t know what to do anymore, and I’m at the end of my rope. I feel so desperate for help. Does anyone have any advice? I don’t think I can make it one more week like this. COLLAPSE ▲

Hi All!

Long time, no talk. Dad's been doing well. It's been 5 years since his recurring cancer. Now, however, his hardware has started to come through his chin. Our surgeon tells us this is quite common when someone lives this long after having their mandibulectomy. They say he can either have surgery to have it removed, which will take about two hours and has the risk of damaging some nerves,… EXPAND ▼ or leave it poking out and take antibiotics every time it starts to get infected. Apparently some folks opt for the latter.

Did any of you experience this? Any thoughts? This will be dad's 4th surgery related to his oral cancer. COLLAPSE ▲

Interventional Radiology Imagery Guided Needly Biopsy Scheduled for Thu 10/30.

Here is hoping they are able to get good tissue samples and a definitive answer, not just a vague, "likely reactive". Of course I'd rather have the likely reactive conclusion. I've just heard of quite a few false negatives on the needle biopsies only for them to find things later.

Such is the nature of the beast, one step at a time.

Hopefully they can find them and get to them ok.

Will update once I get results.

Happy Halloween!

Howdy Folks,

Had my first PET/CT last month. Head and neck wise it looks decent, some uptake, but I guess that's common and usually just reactive (infectious / inflammatory) response from oral cavity and all the germs, and radiologist deemed "likely reactive".

The armpit lymph nodes are concerning to me.

Hoping to get scheduled for a fine needle biopsy here soon (would kind of like them excised out,… EXPAND ▼ but I guess that's a complicated surgery with significant risks and likely long term effects...).

With my micro invasive and small tumor no neck dissection or sentinel lymph nodes were taken.

Had a CT a year before, but this was my first PET.

Only mention of an actual spread from tongue eventually to armpit lymph nodes here on the forums comes from, Rest in Peace, Cindy721. That was like 4 years after her neck dissection and treatments, after she had a recurrence from much more advanced disease.

My concerns mostly lie with a second primary cancer.

Radiology at the CCC was supposed to be looking at the images to determine if a fine needle biopsy would be a good option. Has been a couple weeks and have not heard, so just "re-pinged" them tonight.

Very few instances of this kind of thing in the literature that I could find too.

Could just be reactive to a Vaccine a month prior, or a stupid yellow jacket sting.

I am itching to just get them biopsied.

Reading from Cindy's (RIP) accounts, it sounds like she had several experiences with false negatives on the fine needle aspirations, and insisted on excisional her last go around with them.

From what I've read on here, some folks are dead set against them, others seems to think when done well they are a reasonable initial step.

Has anyone experiences something similar? Or have any suggestions?

Thank you,

Chris

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HEAD AND NECK: Mild mucosal thickening in bilateral maxillary sinuses. Scattered
subcentimeter bilateral cervical lymph nodes in level IB, II and III with mild FDG
uptake, likely reactive.

CHEST:
Lymph Nodes: Several FDG avid right axillary lymph nodes, for example:
* 10 x 10 mm right axilla level 3 lymph node with SUV max 3.5 on image 133
* 15 x 7 mm right axilla level 2 lymph node with SUV max 5.7 on image 139


---------------------------------------------------------------------------------------------------------- COLLAPSE ▲

Hello TBO,

Welcome to the forums.

Dysplasia is a potentially pre-cancerous condition.

It is similar to say a colon polyp detected on colonoscopy that gets removed and biopsied and comes back not entirely healthy but not strictly pre-cancerous either.


My oral cancer experience started in a similar fashion as you described.

Roughly 5 years before I developed cancer on my right lateral tongue a dentist… EXPAND ▼ noticed a white spot. She was super crucial in educating me to take this dead serious and that I had to get it biopsied if it did not go away in a few weeks.

My biopsy was moderate epethial dysplasia. The oral surgeon who did that biopsy then referred me to an oral surgeon who specialized in cancer for ANNUAL follow up, essentially for life.

It was explained to me with the moderate dysplasia I had ROUGHLY a 10% chance of it converting to cancer over my entire life.

Mild dysplasia I am guessing has a slightly less chance of converting to cancer.

Early detection is crucial not just in terms of survival or suffering in recovery from radical treatments but also quality of life issues for things like speaking, swallowing, saliva, keeling your teeth etc…

My 2nd oral surgeon (1st one who specialized in oral cancer) moved about 3 years into follow up and referred me to another who I saw for about 2 years before a pimple like lesion errupted next to the 1st biopsy scar.

So roughly 5 years after the initial possibly pre-cancerous moderate dysplasia this tiny zit like pustule was removed sent to pathology and came back cancer.

As soon as I had a cancer diagnosis I sought out treatment at our nearest Comprehensive Cancer Center and was triaged in to see a Cancer ENT Surgeon in like 2 days.

Very partial glossectomy like a month and a half later, with wider margins and a throat scope and no further cancer found just more dysplasia, this time mild grade.

A month later and I was 90% back to normal 3 months and I could chew on the roughest of foods and eat spices.

Catching it early allowed that.

No chemo or radiation thus far, no neck disection for lymph node removal thus far.

Bi monthly follow ups the first year, every 3 months this second year after surgery.

5 years of no evidence of disease you are considered in remission (semi “cured”).

So if your insurance situation does not allow regular follow up; at an absolute minimum stay on red alert for any changes or developments doing your own oral exams and seek competent medical care if you ever notice anything change and work it out until you have definitive answers.


Since my surgery I have had this year ultrasounds, male mammogram, abdominal MRI and a PET/CT of mid thigh through skull.
(some from other symptoms)

3 Armpit lymph nodes on the PET/CT lit up from the tracer. Pending biopsy decision on that, possible its just inflammation or infection.

All that to say “getting in the system” early and staying on top of things and doing your part can help to keep things from getting much worse.

There are no garuntees in this, but sometimes you can be proactive and help yourself be situated well.

So now at my next visit we will discuss the PET/CT and I hope to have the lymph nodes biopsied before then.

Waiting on interventional radiology to decide if they can get to the nodes with ultrasound guided fine needle biopsy.

Here is hoping your experience ends with just some mild dysplasia that never progresses to anything bothersome.

Best wishes and take care,

R/

Chris COLLAPSE ▲

I'm a person of foreign origin staying in one of the Western countries. I am tbo, male, early 30s and straight. I have a history of HPV infection in my genitalia. It has been cured since then. I have gotten 2 shots of HPV since then.

I have been having on and off pain in the right underside of my tongue since mid-last year. I have been procrastinating since I did not have… EXPAND ▼ insurance details. A few months ago, my PCP identified a white patch under my tongue which I failed to notice. She recommended me to an Oral Surgeon.

Last month, I had my tongue biopsied, and it came back with the result of "EPITHELIAL DYSPLASIA, MILD". I do not have a chance to talk to an oral surgeon till the end of next month and am concerned. I want to know if anyone faced similar situation in the past and what was the prognosis? Any sensible responses will be much appreciated.

The pathology report shows as below.
Diagnosis:
FINAL DIAGNOSIS: EPITHELIAL DYSPLASIA, MILD
MICROSCOPIC DESCRIPTION: Multiple sections show
keratotic stratified squamous epithelium exhibiting
mild maturational changes. These changes consist of
basilar hyperplasia, nuclear hyperchromaticity, cellular
pleomorphism and increased numbers of mitotic figures
involving the lower one third of the epithelium. The
underlying fibrous connective tissue stroma contains
an infiltrate of lymphocytes. The dysplastic changes
extend to the inked surgical margins.
NOTE Any residual lesion should be excised and submitted
for microscopic examination. In addition, any irritative
factors such as tobacco usage or alcohol intake should be
discontinued. COLLAPSE ▲

Hi Good People,


I'm a person of foreign origin staying in one of the Western countries. I am tbo, male, early 30s and straight. I have a history of HPV infection in my genitalia. It has been cured since then. I have gotten 2 shots of HPV since then.


I have been having on and off pain in the right underside of my tongue since mid-last year. I have been procrastinating since I did not have insurance… EXPAND ▼ details. A few months ago, my PCP identified a white patch under my tongue which I failed to notice. She recommended me to an Oral Surgeon.

Last month, I had my tongue biopsied, and it came back with the result of "EPITHELIAL DYSPLASIA, MILD". I do not have a chance to talk to an oral surgeon till the end of next month and am concerned. I want to know if anyone faced similar situation in the past and what was the prognosis? Any sensible responses will be much appreciated.

The pathology report shows as below.
Diagnosis:
FINAL DIAGNOSIS: EPITHELIAL DYSPLASIA, MILD
MICROSCOPIC DESCRIPTION: Multiple sections show
keratotic stratified squamous epithelium exhibiting
mild maturational changes. These changes consist of
basilar hyperplasia, nuclear hyperchromaticity, cellular
pleomorphism and increased numbers of mitotic figures
involving the lower one third of the epithelium. The
underlying fibrous connective tissue stroma contains
an infiltrate of lymphocytes. The dysplastic changes
extend to the inked surgical margins.
NOTE: Any residual lesion should be excised and submitted
for microscopic examination. In addition, any irritative
factors such as tobacco usage or alcohol intake should be
discontinued. 02
[u][/u] COLLAPSE ▲

Thank you for your kind words. I am doing okay, even though it seems to be some new challenge every day. Right now I am working on getting a new upper denture just for cosmetic purposes as I will never be able to chew. My husband wants me to do it no matter what the cost, mainly because he thinks I will feel better about myself if I do. He's right however at $4,500.00, I'm worried about it not… EXPAND ▼ working. It's been so long since I've had a denture that my mouth has shrunk and my upper gum touches my lower lip. I have a lot of faith that "Thoughts are Things" so I'm working on staying positive.

Thanks again.......You've given me the opportunity to get some thoughts out of my head. COLLAPSE ▲

My name is Peggy Sax. Maybe some of you remember my husband, Shel Sax, who died August 8, 2024. This is the first time I've visited the forum since then. Shel lived for 20 years after his initial diagnosis, always devoted to The Oral Cancer Foundation, where he spent countless hours donating his time. He loved and deeply valued this community. Brian Hill was his mentor and a true superstar. This… EXPAND ▼ community was a lifeline for him. Once, Shel even went to Las Vegas to meet others from this community in person! You can also learn more about Shel by scrolling down on the Key Staff tab: https://oralcancerfoundation.org/about/key-staff/. Thank you, Brian, for remembering Shel here.

I'm writing to thank you for building this community. It's emotionally challenging for me to revisit forum posts, and at the same time, very comforting to experience the support, inspiration, advice, and expressions of deep kindness. All my very best to all who are enduring this journey in whatever capacity.
Peggy COLLAPSE ▲