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, 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

----------------------------------------------------------------------------------------------------------
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


----------------------------------------------------------------------------------------------------------

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 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

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 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.

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 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]

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 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.

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 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

Hi Love the PN,

Welcome to OCF and I am so sorry to hear of your diagnosis. It is a long path, many months, through surgery, rads, and chemo. What questions do you have? There is so much to this process that I can't easily document here so would rather address your questions first.

Stay safe and keep the faith,
Nels

Hi Goodpn,

I am sorry to hear of this issue. I do recall it took months for the swelling of my tongue to come down to a manageable level. I remember asking my doctor at many visits - why is it still so swollen? I had to learn to be patient with this. It did eventually come down. Hope you find some relief soon.

Stay safe and keep the faith,
Nels

Hi Derf,

Welcome to OCF and I am so sorry to hear of your recent diagnosis. I went through a similar surgery and treatment about five years ago. I had half my tongue removed, rebuilt my tongue with flesh from my forearm, my forearm was fixed with flesh from my upper thigh. I had a feeding tube and a tracheotomy. A few months after surgery, I received 6 weeks of radiation treatment. Recovery from surgery was quicker than recovery from radiation.

You will likely be in the hospital for a couple weeks. Just depends on how you recover and the extent of the surgery. Your tongue will be very swollen for many days, weeks. It took mine many months to come down to a somewhat normal size. I could speak fairly quickly, within a day or so, of surgery but it was quite slurred speech and hard to understand. But, you could understand me. I practiced speech as much as I could with the nurses. This was during Covid so not even my wife could visit me. In many ways not having my wife sucked but one good thing came of that - I had to learn how to take care of myself and use my words etc. The nasal feeding tube is fairly simple but I had to be really careful not to catch it on cabinet handles or with my thumb when reaching for something, etc. It's attached to your nose so be careful! Within a couple months, I was having some conversations with the general public/random people. Everyone could tell I had an impediment but they were patient when I had issues pronouncing something. Keep in mind, everyone's recovery is different and depends on many variables. I could see improvement every day or two. Keep a journal and take videos of yourself. Occasionally, I would go back and read them or watch them and it would help me see I had come a lot further than I thought.

Radiation is a slower recovery. Flavors disappear and go wonky by the third or fourth week. They keep getting worse until about 2 weeks after you complete radiation. It is a cumulative effect. Recovery of flavors, some, will be a few weeks and months. But, many flavors will take many months. Years later I still saw improvement. Spices were hard for at least a year. Ketchup was hard for months! But, today, I can eat low level Mexican, Indian, etc.

My speech today is fairly good. Most people would not know unless I told them. I still have a lisp but it is minor. Food is not normal but I can eat almost anything now. You will lose a lot of weight after surgery and during radiation. So eat anything and everything to gain it before. I am 5 ft 11 inches tall and weighed about 165 into surgery. Came home at 150. Gained almost 10 lbs then rads dropped my down to about 140/145. And, I focused hard on eating.

As for return to work. Not sure. I was able to do a fair amount from home but have more of a desk job. I was on the phone with customers in about 8 weeks. They knew my story and were patient with my speech. Physically, I was able to go for walks in the hospital within hours of waking up. I was going for short walks/jogs by a month. I surfed, one of my latest passions, within about 6 weeks (as soon as all the skin graphs, etc healed completely). I was doing yoga and light physical stuff at the hospital, the whole time. Surfing was pathetic for weeks. My shoulder on the side they took all my nodes was soooo weak. The muscle loss was obvious looking in a mirror. But, over 3-4 months, I was able to work back to running 4-5 miles and surfing as hard as before.

I am happy to jump on the phone with you as there are so many things that I would forget to type here. I was fortunate to find someone before my surgery to talk to and I found it really helpful. I will send you a private message with my number. You can access private messages by clicking on your name in the upper right of this screen.

Stay safe and keep the faith,
Nels

I just turned 69y/o and 5 days later received diagnosis SCC on left side of tongue on 9/4.
Will get the CT scan this week, see my PCP and meet with surgeon next week. Surgery Oct 20.

Without benefit of the scan yet, the Dr estimated it could be @ a 1 inch width x 3 inch length part of tongue removed, and neck lymph nodes removed for evaluation.
I'm still working but had already planned to retire at end of this year.

I have looked through many topics and posts. I would be interested in some details of what the first few days after surgery are like. I guess I'll have a sore neck with large bandage.
I wonder about the tongue healing time, amount of pain during healing, etc. Probably have feeding tube through nose?
I expect my surgeon and/or his staff will give info about those things. But I have a lot of time to think and wait first.

For work, I transport frozen research material and frozen vaccines, etc. in a specially equipped truck which involves record-keeping, temperature monitoring, and the usual trucking industry things.
Wondering when I can expect to return to this kind of work, and what workplace difficulties to expect with the loss of normal speaking.
Already applied for short term disability.

I know that much will depend on the CT scan results.

Thank you in advance for replies.

I had surgery back in June, 2025 to remove cancer on my tongue. In August, 2025 it was obvious that the swelling was not the cause of my tongue being too big. It feels like I have a marshmallow stuck in my mouth. I started radiation on August 25, 2025 and I have 6 treatments to go. My Dr has told me that he will not attempt to reduce the size of my tongue until 3 months after I finish radiation. Has anyone else had this problem? If so, how was it resolved?

Nice to meet you all.

I was diagnosed with squamous cell carcinoma of the tongue after biopsy results came back positive on Sept 12th. I was sent to a Head & Neck oncologist who reviewed the CT scan and now I'm scheduled for a hemiglossectomy and neck dissection on Oct 6th. Then after recovery I'll be undergoing radiation and chemo. I'm in my mid-40s and really wasn't expecting something like this so soon.

I work as a software engineer and love to play board games, my favorite for the last several years is called Spirit Island. I live in the Pacific Northwest, in fact it's my second time living here: the first time around I was working for a small startup that went under and had to move back to the South but luckily I eventually got the opportunity to move back. I can't take the heat and humidity down there anymore!

Hi Stephen S,

Congrats on 21 years! You inspire me as I am about 5 years out. I had rads to my right neck and mouth and I do experience some cramping and tightness. The cramps are actually under my jaw and can be fairly intense. I have a hard time tracking why they happen some days and not others. Probably hydration, electrolytes, stress...

What are your specific issues - lack of mobility? cramping? pain?

Stay safe and keep the faith,
Nels

Sorry UkuleleDude,

I hope your surgery went well and your pain is well controlled in recovery and are figuring everything out and adjusting as well as you can.

Best wishes for you in a speedy recovery and figuring out a new normal and keeping your chin up and all that!

Oh no Nancy, that sounds terrible. You have been through the ringer again and again.

I hope you find good encouragement and support.

I can’t priovide any advice; all my stuff has been super minor; but you do have my gratitude and awe for enduring all that.

Thank you for battling your way through all that and keeping the fight.

It is insirational.

Best wishes for you and will be praying for you and everyone in a smilar boat like that.

I guess I'm considered an old timer since I've survived 21 years.

I wanted to discuss an issue related to radiation ☢️ the gift that keeps giving.

I am experiencing radiation fibrosis on my right neck which was irradiated.

Has anyone else gone through this?