I think if the doctors aren't in the same immediate practice, they are different opinions. I don't know a lot about it (just a patient!) but in my area, we have two main hospitals. The doctors have to affiliate with one or the other (or both) to be able to see patients and perform procedures at those hospitals. It really has very little to do with anything more than that, as far as I can tell. Just means that next time I break a hip, I might want to go to the other one so I get a different on-call surgeon, LOL, if I didn't like the one I just had, (Jury is still out on that, actually, but it makes a nice example ... and they never did tell my primary where I was.) My primary can see patients at either hospital. My OB could deliver babies at both, but had a preference about which one he'd rather deliver at. And so on.

Now, if the office is actually IN the hospital, then it's probably not at all like the situation I am describing and feel free to disregard everything I've just said. It's just how I've observed doctors and hospitals seem to work in our area (except the ones hired directly by the hospital for ER stuff and so on).

((hugs)) still rooting for you!

Howdy - Sorry to hear about your needed teeth extractions. I had a loose tooth extracted a few months ago. The oral surgeon, drew blood and spun it into a clot. I'm not sure of the mechanics but, the clot was inserted into the socket after the tooth was removed. I followed up with the oral surgeon and my dentist, both were very pleased with the healing. I'm not sure if it will come up in my signature but:
20 year survivor
two rounds of radiation
one round of chemo
ORN resulting in jaw removal

Best wishes for a good outcome with your tooth extractions

I went to a speech /swallowing therapist, who gave me some very good and easy exercises.
Some as easy as just looking as far left and right several times, each day.
Maybe it will be frustrating at first, but as you stretch out your neck, hopefully you will gain mobility and less pain.
Everything with this cancer recovers so slowly, but surely.
You will recover over time, stay positive.

Thanks for the quick reply. With no biopsy they’re only using their experience saying there is no cancer, which I assume is right Only a biopsy can prove cancer or not.

I’ve had all, except one, proved to be cancer diagnoses with a FNAB under ultra sound guidance by a pathologist. I’ve had none recently as I’m 5 years Cancer Free, which took me10 years!

Good luck with everything!

Thanks for your thorough response Rabbit. The information you gave me was precisely what I was curious about.

I honestly have no qualms about talking about my sexual history with doctors or anyone really, other than maybe my parents... it was disappointing that 3 providers didn’t bring it up with me! Especially with the information out there about my demographic being particularly more affected than previously. I will admit, ENT #1 saw me before these recent concerns... I don’t know what my tonsil looked like then. He and the other ENT who I saw my recently, are faculty at Harvard Med School. I’d suspect they are educating students on HPV correlation. Or I’d hope. In fact, just the other day, Mass Eye and Ear shared an update on HPV. Both have 20+ years experience.

As I mentioned, I have had a HPV positive pap about 13 years ago. But the following year and ever since, I’ve been negative. There is so much info out there that my head spins. I am a researcher, but my scope is less about pathology. I saw really recent information that the presence of antibodies actually was a risk factor for HNC whereas previously, it was said antibodies was a protector. Unless I’m just really really bad at interpreting lingo (which is a strong possibility.)

I’m not sure how old you are but I suspect not much older than me... I felt the immediate response was “you’re too young”. Even the nurse was curious why I was there. I’ve got this before - when I had a mammogram and when I had a colonoscopy. It’s discouraging to me when symptoms aren’t fully investigated due to age because of low level of suspicion. Or maybe I’m just misinterpreting all of it. Anyway, I’m rambling, thanks again for providing your info regarding HPV history.

Awesome! So glad you found people you can work with! Good luck!

Hi Michael,

I answered more thoroughly on the Introduce yourself thread...

If you read my Signature, you'll see that my Primary surgery was in 2017. ( glossectomy, mandibullectomy, neck dissection, etc)

But this year, I've had to begin all over again Because My Cancer Has Returned .

I don't know what's coming next because I have to first heal up from these two surgeries from April & May. But I can tell you my calendar in full of appointments. And I have very complicating comorbidities, like my underlying Genetic Immune Deficiency. Yep, I was born Immune deficient. Every 28 days I am admitted to the hospital to get my infusion of intravenous Immune Globulin. That replaces a small part of what I do not produce...

Anyway I am quite tired now!! And because of my continuing aspiration pneumonia problem, they are also discussing taking me off of my liquid diet. And that's all I have left !

I will get through it somehow..

Crystal

Son of Patient,

I kind of figured they were looking for some type of cancer with the PET/CT, but it’s a possibility of it being TB you mentioned, which I know nothing about, but it seems the lesser of two evils!

I hope for the best whatever outcome, and feel you’re doing the best you can among the way, and hace my admiration! Here, there are immuno therapy treatments now making possible dreams a reality, so I hope that would be an option. If it’s needed.

Take care for now, and my thoughts are with you along the way!

Welcome to OCF, Hazel! Im glad you found our site! OCF is the largest online oral cancer (OC) site dedicated to providing correct and up to date medical info for OC patients and their caregivers.

Its always great having survivors join our ranks! Being 10 months post rads, you are still in the middle of your recovery phase. The worst of everything is many months behind you. A complete recovery takes 2 years after finishing rads. You should notice more improvements with your dry mouth and sense of taste here and there up until about the 2 year post rads mark.

Welcome to OCF! Im very sorry you are facing a major surgery in your near future! Im sure you must be very worried thinking about the surgery. Waiting is never easy but staying super busy will help pass the time.

Im very sorry but we're a group of oral cancer (OC) patients and caregivers, frequently we do not have knowledge or info about specific health concerns, especially non-cancerous ones. I cant think of anyone recently who has had this exact procedure done. When doing a couple searches, Ive come up with a reputable website and an OCF thread from 2012. Im sorry that I dont have more helpful info.

Best wishes with everything!


National Center for Biotech Info, Partial Pharyngectomy

OCF forum thread, partial pharyngectomy

Welcome to OCF, Cliff! You have found a great resource made up of oral cancer patients/survivors and caregivers who share their experiences with each other. We all understand what you are going thru.

A complete recovery takes most of us 2 years after finishing rads. Some members over the years have reported noticeable improvements with their saliva past the 2 year post rads mark. Hopefully you will be one of the members who took a little longer to complete your full recovery.

Im very sorry to read about your long term after treatment problems with saliva and your tongue feeling burnt. You are not alone!!! A great many oral cancer (OC) patients/survivors have ongoing health problems, some arent noticeable while others can be life changing problems. Its 12 years since my original date of diagnosis and I still struggle with some issues that many other long term survivors dont mention. The lack of saliva for most OC patients stabilizes before patients hit their 2nd year mark of finishing their cancer treatments. Almost everyone notices they now produce less saliva but almost all have greatly improved since they first finished their rads. This can also have an impact on why your tongue is feeling like it is.

Many who suffer from lacking enough saliva have found help with chewing gum or hard candy that contains xylitol. Theres a newer mouth rinse on the market that some have mentioned as helping with their low saliva production. You may also find some help with taking a prescription medicine called pilocarpine. Sleeping with a humidifier may help as
Others have found some over the counter lozenges that sticks to the roof of the mouth as it slowly dissolves (helps overnight). Yesterday in the pharmacy I noticed the small tablet thats stuck to the top of a patients mouth was in both brand name and generic of the chain drug store I was shopping in. I figured seeing it as a generic means it must be a big seller. The only other thing I can advise is to take impeccable care of your mouth by brushing and flossing after every meal, using a tongue scraper and using a water pik (on its lower settings) 2x a day (with warm water and some non-alcohol mouthwash) to get anything missed. Also swishing a combo of one cup warm water, 1 tsp baking soda and 1 tsp salt for about a minute 3x a day should help your mouth retain the right Ph balance which could help make your tongue feel batter. If you havent already discussed this with your doctors you probably should. They may have something else thats new to help with this. Some OC patients have tried acupuncture with mixed results reported.

I know it doesnt help but you are NOT alone with this. Having dry mouth is something almost all oral cancer patients who underwent radiation treatments struggle with for months after rads, some struggle for years. This is known around here by us old-timers as joining the water bottle carrying club.

Best wishes with your continued improvements!

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(Bringing this back up to the top.)