I am sorry to read this. Glad you are top of this latest development. The cycle of fear and unknown post cancer treatment can be brutal. Did you ever see the short article on what it is like to get a cancer diagnosis? This article makes me laugh and cry. Here is a link.

https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis

I hope you get good news at your appointment. And, hoping someone can offer some experience specific to your current challenge. Please update us as you work through this.

Stay safe and keep the faith,
Nels

Good morning, I was curious if anyone had issues on the first post treatment pet scan. Husband Stage 1 Base of Tongue HPV P16+, 35 radiation sessions, and 3 cycles of chemo finished up about 12 weeks ago. First pet scan showed primary tumor resolved and lymph node, but still has a spot to the right of the primary reading at 4.6 SUV. He is being sent to the ENT for a scope to get a better look. Not sure if its inflammation , residual disease and or a new primary. Anybody have this happen?

Hi Mike,

Welcome to OCF and I am so sorry to read of your wife's cancer. I had surgery and radiation treatment in early 2020. My saliva and flavors have continued to return even today over 4 years later. So, try to show patience on that. Although my saliva is still well below what it was before, it is better than a couple years ago. I just kept trying different flavors every month or two. My wife will try something I am eating and be impressed I can handle that level of spice. She knows how sensitive spices were for me over these four years.

There are so many factors in a recurrence calculation. Your oncologist should be a best source on that but feel free to try to find another source if you want it. But, if you do, I would recommend they have access to all your data (the hospital has your exact radiation dosage, surgery details, etc. on file) and you can get a copy for another source to review.

Living after cancer has it's anxieties. I find I am best at reducing that anxiety when I practice gratefulness for every day and stay active both physically and emotionally. One of my favorite internet quick reads on this is "What it's Really Like To Receive a Cancer Diagnosis." on Cancer Pal website. Here is a link.

https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis

Also, here is one of the most content rich books on how to live a life to reduce cancer risk. Anticancer - A New Way of Life. It covers everything from food, to exercise, to stress, etc.

Hope this helps and please keep us up to date.

Best,
Nels

Hi Jam1411,

Welcome to the OCF forum and I am so sorry to hear of your mother's cancer. Sounds like surgery went well. I had surgery and follow-up radiation in early 2020 for stage 4 SCC on my tongue and in one lymph node. As for how often to get scans and evaluations, mine were approximately every three months for the first couple years. Now, I am nearly five years out. The last few years have been every six months.

The doctors should be able to help with the sores with some medication, mouth rinses, etc. Is pain in her mouth the main reason she has trouble eating? Getting enough calories and staying relatively active are key. Plus, making sure to have a social life and time with loved ones. I found it intimidating headed into the general public with a significant lisp, etc. Restaurants early on were especially hard. It was hard enough to eat much less be social and eat in public. But, I kept trying and practicing, and using lots of napkins! Have you considered a feeding tube? If she can eat enough calories normal, I think everyone here would advise to keep fighting for that. Is she well enough to travel out to social activities?

Biopsy? Hmmm. Reading your note, it appears you have seen multiple doctors about these issues and all seem comfortable. But, nobody knows your mom better than herself and her caregivers (you!). So, if you are still worried, I would keep pushing for one.

Thanks for posting here. Please keep us up to date.

Best,
Nels

Hi everyone

I'm three weeks into recovery from surgery and radiotherapy for stage two buccal carcinoma. I think I'm healing quite well. Amazingly, all through treatment I was able to still taste things and keep my weight up... really lucky. But in the last few days, I'm getting a really intense salty taste in my mouth, worsening as the day goes on and into the evening. I can still taste other things ok but it's like my gums and tongue are seeping out salt. I had nothing like this while I was actually in treatment Has anyone else experienced anything similar and, if so, has it resolved itself? What helps?

Hi eb 123. Had my fibular flap surgery done at Methodist Dallas, Tx by Dr. David Kang just over 2 yrs ago. He does 1 to 3 of those per week, teaches other surgeons the technique. Give his office a call, maybe he can help. Did your surgeon put you on Pentoxifylline to maintain circulation?
Wishing you the best.

Hi Josh,

Welcome to OCF and thank you for reaching out. I am so sorry to hear of your challenges and back/forth with this diagnosis. I was diagnosed with stage 4 SCC on my tongue in March of 2020. I recall that feeling well of the "what-ifs" and the anxiety. You just want definition so you can develop a plan and start fighting. After all my exams and meetings, I had to wait for the Cancer Board's final recommendation then a surgery date, etc. I clearly remember after I got a final surgery date, and it was fairly soon, hanging up the phone and running circles around the living room pounding my chest yelling "LETS GO!! CUT THIS S&#! OUTA ME! APRIL FIRST...LETTTSS GOOOOO!" as my wife just stared at me confused why that made me so excited. It felt so good to know the cancer would soon be out of my body.

Your story will certainly relate to others so please keep us up to date. Hopefully someone who reads this has been through similar to you and can comment more specifically about your process.

Best,
Nels

My case is similar to Nels so I guess your dad won't have problems growing his beard after few months after radiation.

Thanks! I've been following your story as well, Chris.

Thanks Nels!

Side pain that I had before the biopsy and worse after has finally gone away but I have yet to find the culprit of what is causing it.

So as an update for my October 2024 follow up with the Oncology ENT Surgeon who did my tiny, very partial glossectomy--he discussed it with me and does not think another biopsy is yet indicated with the new leukoplakia. It is not as pronounced a lesion as the original leukoplakia was what almost 5 years ago now that came back as moderately dysplastic. It also has no detectable palpable change in texture or firmness. It also is not sore. He was not concerned about it, apart from just keeping a very close eye on it, he will see it every 2 months, and if I notice any changes to immediately contact his office, and a more immediate appointment could be made.

Possible just Frictional keratosis from changes in the tongue as the scar heals and the shape and flexibillity of the tongue changes and swelling and all that subsides, yet the shape of it is a tiny bit different so new parts of tongue are rubbing against teeth, new scar tissue has formed etc was my understanding.

We discussed too what a previous oral surgeon (who was oncology focused) had said regarding chasing clear margins from all dyspastic tissue, as my original biopsy 5 years ago stated that the dysplastic tissue extended to the margins of biopsy tissue sample as it relates to the new white spots.

My biopsy that found the micro invasive cancer had very narrow margins, thus the partial glossectomy, which found no further cancer, and more dysplastic tissue only.

The previous surgeon had said that he'd be happy to remove as much tongue as I wanted, but that it was not indicated. Sure you need nice wide margins around actual cancerous tissue.

They excise the visibly apparent lesion, and the first surgeon did get the entire white oval. But beyond that white oval the tissue remained dysplastic.

He said the evidence was inconclusive on whether it was beneficial to keep removing tissue until no further dysplastic tissue is found. To a layman such as myself, it would be parallel to removing pre-cancerous polyps in the colon. It can't become cancer if it it "ain't there no more"-- kind of deal. But I guess with the tongue there is concern that additional surgeries and irritation to the tissue may be worse for generating cancer than just leaving some moderately dysplastic tissue, that normally has a 1 in 10 chance ('ish) of converting to cancer.

The concern is irritating something currently benign, and possibly would have remained so for life, and unintentionally keeping the inflammation thing going to the excised tissue for biopsy being an actual trigger to malignancy.

So it's not as simple as just keep going to you get all the dysplastic tissue out. Yes it would still seemingly be ideal to get rid of it all (unless you sacrifice more function of the tongue and may trigger unecessary side effects) in the first biopsy with nice fat margins. But it is not necessary to keep going back in to get clear margins for merely dysplastic tissue. "First, do no harm" kind of thing comes to mind.

This is all as I understand it, and I think there are some clinicians who are on a different persuasion or school of thought, or see the evidence differently, but it's not a clear cut issue.

My current ENT Oncology surgeon said that he pretty much agreed with what I remember the former doctor having said as I stated it roughly.

So I did not press the issue or ask that he just go ahead and do it.

This is one of those tough call areas, and why I could never be a doctor and advise people on these uncertain things! I can barely decide what I'd prefer for myself, yet deal with the pressure of trying to advise people with the unknowns of how the disease actually progresses in full etc...

I trust this surgeon, and keep telling myself we are all human, I could insist on biopsy, but its my call, he is merely stating it isn't warranted AT THIS POINT. He is comfortable, as vigilant as I am, taking pictures and paying close attention to everything, and him seeing me every two months, that a guarded, watchful waiting is very reasonable, and he still feels comfortably positioned to aggressively and rapidly respond if anything changes. If that lesion or another chunk of tissue later becomes cancerous, it's not the surgeons fault or my fault, but a balanced approach to the pro's/con's as we see them.

If the lesion was more pronounced, visually, and palpable, gave pain or redness or anything else odd, that'd tip the scales more towards additional biopsy.

Sorry for the disjointed thoughts and train of logic--this is the first medial issue for me that I'd consider serious.

Oh back to the not clear margins from dysplastic tissue 5 years back, and not getting that all then. It's not at all clear that even doing that would have prevented the micro invasive SCC form arising. Whatever nascent dysplastic tissue was forming and whatever was causing that originally likely remained in my mouth environment, along the lines of the field cancerization phenomena, as I understand these things (which may be wrong).

This is where I wish I could volunteer my tongue tissue to research studying how this all works so they could know more clearly how to deal with remaining dysplastic tissue, is their SIGNFICANT reduction in risk, or even slight elevation in risk.

Better imagery that can detect minute amounts of cancer...etc...etc.. Shoot! That was the question I don't think I've asked him yet: w"ould the best PET/CT even be able to detect my previous tiny tumor?" I don't think sub-centimeter PET is viable at this point for the smallest of tumors.

So thats where I am at this point. Watchful waiting.

R/
CQ

Hello,
While I do not have Oral Cancer, my father was recently diagnosed with stage 3 Oral Cancer, likely from exposure to burn pits while he was in the military. He is going to have intense radiation treatment (proton therapy) five days a week for seven weeks, and chemo once a week. The thing is, he has a beard that he loves, it is a huge part of his identity, he is constantly compared to ZZ top. The idea of losing it temporarily for treatment was rough, but manageable. However, we were recently told that he is going to permanently lose his beard. This is going to sound dramatic, but this is probably the worst thing that could happen to him. It is going to devastate him to lose his beard forever. He was also told he will likely be getting a feeding tube, but he has said that doesn't scare him as much as losing his beard. He has been staying off the internet at his doctors recommendations, but I have been searching for any way to possibly preserve his follicles so that he will be able to grow his beard back. If anyone has any ideas or resources that could point me in the right direction, I would be so thankful. We are located near Atlanta but would be willing to travel if there was hope to save his beard. I know this seems small, but it really means everything to him.

I would also appreciate general recommendations on how we might be able to make the whole process easier on him. My mom is providing him with the emotional support that she can while my siblings and I are trying our best to do anything we can to help, it is just difficult to know how to support him right now. While he is bombarded with appointments right now, we do plan on making him to go to a cancer therapist, thought this may be after his seven weeks of treatment.

Any insight or advice would be helpful, I just want to help my dad as much as I can.