Hi Bowser,

Welcome to OCF forum. I am so sorry for what you and your husband are going through. I saw a question about handling mucous and this one about general support following treatment. The answers will depend on the diagnosis and treatment. Please advise where the cancer was found? what stage? surgery? If so, scope of surgery? radiation treatment? Chemo?

For me, I had stage 4 cancer on my tongue, they removed half of my tongue, all nodes same side of neck, rebuilt my tongue with flesh from my forearm, got a trach tube for breathing, nasal feeding tube until I healed enough to eat through my mouth, then about 6 weeks after surgery, I got radiation treatment.

I will offer my experience with mucous management. Mucous was an issue mostly during my stay at hospital as I recovered from surgery. Nurses would come suction out the blockage, through the trach hole in my neck, to clear my throat as needed. Sometimes multiple times an hour. By the time I went home, in my second week of recovery, they gave me an at home suction machine that worked fairly well but I was no longer choking on it. AT home, I would suction the back of my throat carefully fairly often. They provided me the small tubes etc to deal with this at home but, again, at home it was not nearly as bad. I taught one of my sons and wife what the nurses did in case I had major blockage like in the hospital.

Hope this helps. Please keep reaching out with questions.

Best,
Nels

What to do, remove all the time when it grows up or wait and see approach?

I am new to this forum on behalf of my husband. Looking for ideas and suggestions to deal with the aftermath of oral camcer.

Does anyone have a stratergy to clear mucus from my husbands throat and moith?

Did you completely removed it?

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.