Daniel,

Welcome to the OCF forum. I am so sorry for all you are going through. My oral cancer was on my tongue and in one lymph node. I went through surgery and RT in 2020 when I was 52. Your procedures are quite different but I can relate to losing lots of weight, the confusion of how did this happen (not a smoker or much of a drinker), etc. They removed half my tongue and I had a feeding tube through my nose for weeks. I had to learn how to drink, eat, and speak all over.

Upshot, I totally agree with your motivation. I kept a pic of my wife and kids with me at all times in the hospital. My surgery was right after they shut down California for Covid so I was in the hospital without loved ones the entire time. In those darker moments, I would pull on them and God. We got through it. It took many months for me to find my new normal but slowly all things got better. My recovery from surgery improved by the day but from RT I had to be much more patient. Some flavors took years to fully come back and some spicy stuff I still can not eat. I can still recall the first time I spoke to a stranger, ate food in public, etc.

Today, I am stronger for it. I am more present with loved ones, more patient in life, and my relationship with God is deeper. Please keep us up to date as you go through your CT and RT. Your story will certainly help others plus I found journaling to be helpful for me in general.

Stay safe and keep the faith,
Nels

Daniel - Age 39. My cancer story begins Fall of 2023, when I noticed a small bump, similar to a skin tag, on the roof of my mouth. I ignored it for as long as I could, but as a goal to start taking care of myself, started going back ot the dentist in June of 2024. The dentist felt it was a benign issue, and was probably just a deposit of some sort on the roof of my mouth, but due to the firmness, wanted to get a biopsy sent off. In July of 2024, I had a small section biopsied, and the call came August 7th of 2024 - You have cancer.

At first I was in disbelief because I'm adamantly against smoking, and unsure of what I did wrong to cause this. However, there was no time to waste, and began seeing an oral surgeon about surgically removing it. Very poor experience with the surgeon as they offered very little information as to what was going on and what the outlook would be. Through a CT scan, it was determined that the tumor was around 1cm x 1cm x 0.5cm and had started to misshape the hard palate. A surgery plan was put together and I began also seeing a prosthedontist for the hole in the roof of my mouth that was expected. BTW - They do not accept any insurance, so I was also given the sticker shock of $4k for the first mouthpiece (referred to as an obturator), $6k for the second one post surgery and recovery, and $9k for the final obturator.

Fast forward to September 30th, I had surgery to remove the tumor and part of my hard palate, and also have it sent off for labs to ensure the margins were clear. The absolutele worst experience from this was the surgical packing that had to be in place, between the obturator that was installed during surgery, and the open wound. The smell, the drainage... nausea inducing nightmare. Of course it was in my sinus cavity too, so I could smell and taste the fluid and was looking forward to the post-surgical removal of the packing. In one week, I managed to lose 35lbs, and continued to lose weight until my mouth was healed enough to start eating more solid food without the pressure of the obturator hurting my wound.

The dissected tissue was analyzed during surgery and found to be in clear margins on the bone and the soft tissue, however the dissected tissue was sent off for confirmation, where it bounced between 3 different labs, and finally landed at University of Michigan. The results were postive for margins on the bone, however they did find perineural invasion, indicating that RT was now back on the treatment plan, since I was advised that there was an 80% chances of recurrance within 8 years without RT.

Fast-forward to now - Tomorrow I have my first appointment for CT and masking for RT to begin. It's expected to begin within 2-3 weeks while they make the immobilization mask. And today, for the first time in over 10 years, I had to trim a beard of 12 inches, down to 0.25in for the masking, and feeling lost in my own body. I feel like a stranger to myself, and just want to pull through for my wife and kids.

5 years completed since my last radiation, I want to thank all the members who contributed to this group that helped me a lot.I am really so thankful to this forum for all the info and support I got f r om all the members 🙏🏼

How is going?

Eradication of proliferative verrucous leukoplakia with toll-like receptor 7 agonist (topical imiquimod): a case report



https://pmc.ncbi.nlm.nih.gov/articles/PMC11604604/#B18

[img]https://shorturl.at/oT0Ch[/img]

I went to head and neck surgeon at local hospital for 2nd opinion and he completely dissmissed it as not issue, he even asked me "Who told you that you have Leukoplakia?!" Well it was diagnosed by professor at the university dental school plus 2 biopsies on two different sites. He also dismissed it as not an issue and told me come back in one year. Obviously Dr.Google influenced patients makes doctors irritated..

I still believe it is PVL since all signs of PVL are there albeit I am not woman

How are you doing?

Sorry - I would go for a second opinion elsewhere. If you’re having issues deal with it. Not getting an answer - see someone else. Having a second could catch something your dr missed - or allay any concerns.

I’m actually having it soon too.. I have ORN on my right jaw.near the back, and I’ve had a new primary pop up on my tonsil... same side. My surgeon said he’s not going to go in and operate with out addressing the ORN so… I’m having the cancer removed and the jaw replaced! I’ve been trying to find pictures on the internet but… no luck. Best of luck!

I had a hemiglossectomy and lymph node removal 14 yrs ago - followed by radiation and chemo therapy. This past fall I had a sore throat, after antibiotics I knew something was off - I went to see my original surgeon. I now have a new primary - on my tonsil and part of my palate - the only option is now surgery - has anyone had this happen ? Has anyone been reradiated after 14 yrs? Thanks♥️

Got biopsy result around year ago - leukoplakia without dysplasia, in meantime white patch around 1 cm long came back and formed like big lesion without pain while rest of the gums underneath is eroding, is that beginning stage of cancer? Doctor thinks that it looks good he said come back in one year , but I am scared..anybody here had PVL leukoplakia?

I had oral cancer surgery and radiation. It is now 2 months post radiation and I am left with trismus. I have an obturator due to loss of tissue exposing sinus cavity in right side of my mouth. I am doing stretching exercises to expand my bite, but not making progress. Has anyone experienced this and will exercises work to return my bite to normal?

I am scheduled for surgery to replace mandible due to ORN Jan. 2025. I am wondering if anyone has gone through this surgery and would like to share your experience. I’m scared to death! Mostly because they’re operating on radiated tissue and I understand how difficult that can be. I, of course, am looking for positive outcome but feel very unsure I will be able to achieve that given the amount of RAD I had 25 years ago. Anybody out there who can calm my nerves?

Hi Billy,

Welcome to the OCF forum and I am sorry for what you have been through. As for stiff neck and tight mouth, tongue, etc, I was given exercises to perform daily that help my flexibility. I used to be much better at doing them the first year or two but not as good lately. I had tongue cancer, with surgery and radiation (no chemo) in early 2020. I experience strong cramps in my neck now (sometimes daily, can skip a few days, started last year) but can still open my mouth enough to get root canals (many since treatment) and move my neck enough to do sports (surf, ski, bike, jog) so I think I am lucky. Getting active soon after my surgery and staying active likely helped too.

Did you get any advice from a speech therapist or oncologist on how to stretch and keep maximum motion? I have read of some people doing oxygen treatments (hyperbaric chamber) with some success.

Best regards,
Nels

Does anyone have any solutions for the “wooden neck” and extreme tightening of the skin around the mouth? chemo and radiation were completed earlier this year. Impossible to open mouth very wide and unable to put dentures in.
Thank you

You have added your unique post to the back of an existing post thread and I think you should copy and paste it to a new post that is just yours so people will find it.

That said there is a doctor at the Cleveland Clinic that does lots of surgeries just like what you need. Dr, Mark DeLacure. If you had the ability to go there for treatment he’s the guy I’d trust doing this well and with the best outcome. While I’ve been a patient of his, and he’s cut me more than once, I trust him because I’ve stood across the table from him as his assistant in surgeries and seen his work. He is at the top of his game doing things much more complicated than what you have. Feel free to private message me to get an introduction to his staff if you desire reach out to them with this.

I received 2gy a day total 60 gy in 30 days

I would think not. But this is a function of the amount of radiation you are getting which is lifetime dosing. If you total up all early doses that were from treatment (high) and lifetime low dosing from dental X-rays and solar etc (low) you have to decide if this method of early discovery of a lung cancer is still a good idea since its lifetime dosing of something very capable of starting its own cancers. All the low dosing which you don’t give a gy value for may be inconsequential when compared to your treatment finding. I don’t think with out those gy numbers, there is any answer to your question that is scientifically sound. I’m not knowledgeable of best practices in lung cancer detection from smoking so this is pretty much in my opinion a non answer, but an opinion.

Hello Balvertos,

Sorry for the ruined Christmas and panic you are experiencing while you await further testing results for the staging of your disease and next steps.

If things are truly this panic inducing for you, you may want to consider speaking with your primary care provider, tell them the level of your anxiety, as you have described here, and they might be able to give you a pX for some anti-anxiety type meds to help you be a little less on edge about things.

They also may be able to direct you to some other resources, some type of counseling or sounding board type professional.

Perhaps the hospital may have a Chaplain or some type of social worker as well, or you may find such support in your community.

Any of us could get killed in a car accident on the way to work or the grocery store.

The great unknown, is what it is, but siezing each day and enjoying what you have, instead of fearing what may be, seems to me like a good place to start.

If you are still able to taste things well, swallow easy enough, speak clearly etc...enjoy those things and try to be grateful.

I splurged on a big fat juicy steak before my scheduled general anesthesia very partial glossectomy, as I did not know exactly how much tongue the surgeon was going to need to take once he was in there, or how long it would be before I could eat solid foods again.

Fortunately for me probably 2 months later I could eat a tough steak even. Was going to make the best of what I had not knowing.

Anyway there is probably some professional social worker/psychology counselor/Clergy type person you may want to speak with in addition to your primary care doctor for medication for anxiety, once you tell them where you are are at with all this, they may have some recommendations too.

I definitely noticed all manner of things in my oral cavity that I had never noticed, once I became hyper vigilant with the cancer biopsy result.

Come to find out wherever your blood vessels (the larger ones) go, a nerve runs along side them, and there is a little notch in your jaw caused by your pulse in those vessels, and if you keep fidgeting with the notch, you'll irritate the nerve and develop a sore spot. LOL. I told my ONC ENT Surgeon about that and he kindly smiled, and explained all the physiology of that, and new exactly what I was talking about. Sure enough, I stopped probing the notch with my finger, and the "funny bone in my jaw" quit aching and being sore when I pressed it....

My surgeon is great, he never tires of the various things I've noticed. He'll examine them and reassures me.

The new leukoplakia and ridges we are just watching for now, and if things develop I can call and schedule for an earlier biopsy.

Things can always be ok, regardless of what bad final diagnosis you may or may not get.

Trying to get yourself in good positive mental attitude and a "I'm going to fight this, and live my best life now, regardless of come what may"...seizing each day...that is my hope for you and everyone else coming to grips with recent diagnosis like this. Trying not to mentally self defeat yourself, and multiplying your misery seem like good goals.

You may also want to ensure your wife finds a good support network for her as well, someone to talk to (or groups of different folks, family, friends, etc...)

Hang in there!

You got this Balvertos!

Merry Christmas everyone.

Every time I get a glimmer of hope it’s wiped away. I had my biopsy and got the flow cytometry results back first they were normal. I was still holding out hope the lump in my neck and swollen tonsil were benign. A few days later I was told they were metastatic cancer.
A couple days ago I saw the ENT for next steps, we scheduled a PET scan and rad-onc/hem-onc appts. She told me it’s very likely HPV associated tonsil cancer with lymph node spread, but that we could be cautiously optimistic.
I came here and saw a post from someone that said they had surgery and the doctors believed they got all the cancer and chemo and radiation might not even be necessary. I started to think maybe that could be me? Maybe things could be ok?
Then a few hours later I discovered what I think is a tumor on my jaw. It’s a hard lump on the inside part of the jaw under my right incisor, my cancer is in the right tonsil/lymph nodes. I can’t tell if it’s something that’s always been there and I’m only now noticing it, or if it’s something that’s grown over the past few weeks because my cancer is spreading fast and aggressively.
It ruined Christmas. I started panicking. I couldn’t speak. I went white as a sheet. I’m so scared. I’m so lost. I can’t believe this is happening to me. Why does this happen to anyone? I can’t wait 4 days for a pet scan and another week for results I’m going to drive myself insane even more than I already am. This month has been hell. And I know it’s going to get much worse. For me and my family. And my wife is suffering with me and my depression. She can’t say anything to make me feel better. And I can’t shake my fear and anxiety and be present. I can’t take much more of this.

Thank you. The ENT seems to believe it’s HPV related and can be successfully treated, it’s just so hard to have any optimism right now. I have a PET scan next Monday I’m so scared it’s going to discover something even worse. Everyone says stay strong and positive and it sometimes makes me feel even worse when I can’t muster up those feelings/emotions like I’m letting people down or making my situation worse by thoughts and emotions I can’t control. I didn’t ask for this. I just want to live a long peaceful healthy life with my wife and children and I’m so scared that’s not possible for me.

Hello Balvertos,

I am so sorry you received this bad news, especially during this time of year, with a wife and two kids.

Hang in there! It's tough not knowing what we don't know, waiting on answers to what is, and how to move forward. So far my disease has not been determined to be metastatic yet, but I can imagine what you mean about being hyper-aware as I am like that without any evidence of spread yet in my case.

There are quite a few people on here that have had experiences with advanced disease and have come through it swinging, and hopefully can give you some encouragement as you read their stories and about their perseverance through the adversity of it all.

Continue to be brave, and fight the good fight for you and your family the best you can!

You are in our thoughts and prayers, and hope you find some solitude with your family this holiday season as you await next steps.

R/
CQ

I noticed a growth in August, a lymph node on the right side of my neck was swollen. I haven’t felt anything this whole time. Some slight trouble swallowing or feeling of something in my throat here and there, not consistently and mostly when I’m anxious. On thanksgiving I noticed my tonsil was swollen and the day before I was finally able to see my ent I noticed and even bigger lump closer/underneath the back of my jaw. That’s the one they biopsied last week and I’ve been miserable since, mentally and physically, it feels like it’s grown 10 times since then even though I know that’s not true. I got the results that it was metastatic SCC Thursday and will see the doctor tomorrow to discuss the way forward. The wait is excruciating. I’m so scared things will deteriorate in the meantime. Every morning I wake up grateful to still be here but fearful of how I’ll feel today.

It started in August when I noticed swelling on the right side of my neck. My PCP told me it wasn’t cancer and gave me antibiotics mid September. They didn’t work so he referred me to an ENT who could see me until December. On the 4th I saw the ENT and he told me we needed a stat CT. The radiologist listed lymphoproliferative disorder and tonsil cancer with lymph node metastases as the differential diagnoses. They did a biopsy a week later and this past Thursday I received the news that the growth was metastatic cancer. It has been a difficult few days. The doctor mentioned they’ll need to remove the nodes and biopsy my tongue and tonsil. I’m so scared. I’m married and have two children. I don’t want to leave my family. I have an appointment Monday to discuss next steps…I’m trying to be brave and trying to convince myself I can get through this, but I’m just so incredibly scared and right now hyper aware of everything, if I have a slight pain in my ribs I’m convinced the cancer has spread to my lungs already. It has been so difficult.