Hi Joanne T,

Welcome to the OCF family. I am so sorry to read of the challenge you and your husband face. Glad you found this forum early. Please keep us up to date on your husband's treatment and recovery. It will certainly help others and we hope we can help you.

Stay safe and keep the faith,
Nels

14 years post treatment and very grateful to be cancer free I do struggle with some post radiation issues. Dry mouth was low on the list until recently. Not sure why but it got bad recently during sleep. Like waking up 100% dry. Very bad for teeth. I came across a product designed for snoring and (even though I don't snore) I decided to try it. It has helped me SO much. It's a special kind of tape called Adellina Premium Tape. Like $17 on Amazon for 30 patches. Right before bed I just peel a piece off and put it on my closed mouth. I can't even tell it's there and I sleep all night breathing through my nose. Zero dry mouth. In the morning it comes off with no pain or even discomfort. I hope this helps someone. The OCF saved my life 14 years ago.

Peace

Hi, for what it's worth, my husband also had a missed diagnosis although the time frame was a tad shorter - 18 months. He was diagnosed three weeks go and went through CT scans and a PET scan and no spread of the cancer. Point being, don't despair - every case is different and it may still be local. Either way, please get the biopsy and necessary treatment asap because knowing is better than not knowing. Getting treatment started soon is the most important thing!

Also BellaB,

I sent you a private message with the CCC nearest you and the one that is one of the best in the worlds that is the 13 hour drive away. Sorry I needed to edit my messages and remove the mentions of doctors and medical institutions (yikes, looks like I have some of my old posts violating that rule too, and not sure if I can still edit the older ones--oops, dangit.)

The link to the NCI's CCC list is there above and here https://www.cancer.gov/research/infrastructure/cancer-centers (the comprehensive CC's in addition to doing research are active in treating patients..you can read about the the types of cancer centers there that are NCI listed on that link.

There is one in St. Louis that you could call and see about getting triaged for a consultation

I think you can see private messages sent to you by clicking on the letter envelope shaped icon towards the upper right of the screen to the left of your screen name.


Sorry I did not ask my Dr. today about specialists for that type in St. Louis, seemed a tad awkward for me to ask, and although I have a great rapport with him, he was running behind from other late patients due to weather and was trying to catch up.

Best wishes as you make your next appointments and take each day at a time.

R/
CQ

After 5 years ex smoker do I still need annual low dose ct scan of the lungs.

Hello BellaB,

Welcome to the forums. Sorry for the unfortunate complications with your gums and the surgeons concern it may be something so nefarious.

The best nugget of advice I gathered (and that I can currently recall) on these forums, regarding waiting on a biopsy result is "it's not cancer--until it is". That is it's natural to be concerned and worried, but try your best not be consumed by anxiety. Even if it turns into being cancer deal with that, IF, and when that comes. Regardless you will want to remain vigilant with after care and follow up. Sometimes non-cancerous conditions can develop into cancer too.

Even if it is cancer, like Nels said the treatments have advanced.

The symptoms vary widely from person to person.

For myself and many others a painless, non-healing lesion. Mine was just small pencil eraser sized white spot. Was just dysplastic tissue on the first biopsy (potentially pre-cancerous condition). Then like 4 or 5 years or so later the same area became sore. That triggered the second biopsy that found cancer.

For me so far, it was just a very minor partial glossectomy (very small chunk of my tongue taken out around the biopsy site to ensure wide margins of non-cancerous tissue).

I have bimonthly follow ups, in fact go back this Wednesday to see the cancer ENT surgeon who did my partial glossectomy.

The Gold standard on any non-healing oral lesion is a biopsy.

You can't tell just by looking at symptoms, or even pictures or physical examinations.

Anything that might be cancer, needs to be biopsied to see if it really is.

My first oral surgeon kind of reluctantly performed the biopsy, suspecting merely non-dysplastic leukoplakia. But the standard of care is if it does not go away in 2 to 3 weeks biopsy it.

He was greatly surprised when the biopsy came back moderate epithelial dysplasia. All that to say is that it's all about the biopsy.

I will say one thing that reading other's experience on this forum has done as instilled in my mind a vigilance to try and keep on top of this disease early and aggressively.

Regarding delaying biopsy and not following up on your symptoms sooner, again it is not cancer until the biopsy says it is (meaning no one can know until you have biopsy results).

I had a similar thought regarding my sitution when my tongue began hurting off and on around May 2023. I made an earlier appointment to see my oral surgeon in like Sept 2023. He could have biopsied it then, and offered to, but I was not expecting to need a ride home etc.. when I went in for the office visit. We opted to wait and see and did another appointment in Dec 2023. Got the biopsy results back like Jan 2 2024, it was in fact an early cancer.

So hindsight being 20/20 I would have pushed to have my lesion biopsied back in like June 2023. May have just been carcinoma-in-situ then. Mine was staged a micro-invasive stage 1. Just a bit past carcinoma-in-situ. For me the outcome probably was not affected that much at all.


Also anxiety is not good for your health or recovery from cancer, so one thing you can try now as you wait is figuring out ways to reduce your stress and anxiety, or how to live and cope and do what you can to reduce your stress/anxiety.

So you if you've done a bunch of reading on the forums and already have a good idea of some of the things you want to apply, you may want to give yourself a break from reading up until you get a diagnosis.

One determination I made after reading on here, was that if my dysplastic lesion ever became cancer, I was committed to going to a Comprehensive Cancer Center (CCC) and one with a high quality oral cancer program.

The oral surgeon who found my cancer was very supportive of me seeking care at a different institution and even recommended a specific surgeon he knew there.

For me, so far, the CCC provider hasn't been super crucial as of yet, but now I am an ESTABLISHED PATIENT, being watched like a hawk.

Should my disease progress and I need Chemo/Radiation I know the multidisciplinary approach of a top notch CCC is right there, and I already have my foot in the door, and that gives me good assurance I am well situated, "armed and equipped for battle" as it were, should the need for further "battle" arise.

Best wishes for good news on the biopsy and resolution of your oral health problems!

Take care,

Chris

After more research into the topic of implants post radiation, I learned about dental oncology specialists. I live in California and blessed with several very good research universities. Does anybody have any ideas of where and how to get in contact with these folks? I plan on call the radiation oncology department and ask about dental oncology/Oral and Maxillofacial surgery. Make sense?

Hmm i don't no what i'm doing or even doing this right hmm here goes im luke im 32 things are nt great but im holding on gt a partner stepchild i sadly cant have kids😥 and i dont no how long iv had it a few years but i gt that rare ameloblastoma but even rarer were it is its quite large under my cheekbone under my eyesocket the hospital has done a small operation to remove lining or something of that sorts but i was told that they dont want to remove it as for were it is and be risky bloodvessels arteries ect its eaten the back of my upper jar and its sitting in my whole cheek and across my sinuses anyway i gt no one to talk to bwt this so just want to see if anyone gt similiar to me sorry about spelling when i was at school i skipped english class alot 🤣