So maybe a second opinion? This is the resources link on the OCF website.

https://oralcancerfoundation.org/resources/

Go to the best hospitals link. It will take you to an independent, well respected, review of all cancer hospitals in the US, you can sort from the national list, then by city or zip. There is one highly rated nationally on the San Diego list you may want a second opinion from.

In my experience, no quality doctor cares if you get a second opinion, ones that feel threatened by second opinions I wouldn’t want as my doc. If they’re good, having their idea validated by another doctor is a good thing. Second opinions are normal and customary when you are dealing with things you don’t know much about. You body, your car, and more. Be informed when it’s important. Clearly you have a strong background to draw from. But that also means you know there are lots of variables throughout treatment. The only thing we have total control over is where and by who we get treated.

Brian, thank you so so much.

I’m a 69 year old non-smoker male with a history of leukoplakia for the past 12 years. The leukoplakia growths have been removed three times and a biopsy conducted before and during each procedure was negative. The last surgical removal procedure was done in 2017.

Everything was fine until the summer of 2022 when I felt some hardness of the surface of the tongue. A new biopsy was negative and my ENT ordered a CT scan which was also negative. Things changed quickly in November when a lesion/sore appeared on the surface of the tongue. Eating became extremely difficult as anything that touched that area of the tongue was very painful. A surgical biopsy was performed which was positive for squamous cell sarcoma. A PET scan indicated that should there be lymph node it would be on the lef side. A week later, December 15th, the tumor was removed (partial glossectomy) and a left side neck dissection was done. Level 1-4 lymph nodes were removed.

The surgical pathology was generally positive, a T2N0M0 tumor. No neural involvement and all lymph nodes removed tested negative. There were two areas of concern however; the tumor depth of invasion was 7mm and though the margins were clear on one side of the tumor the margin was 1mm.

Initially my ENT suggested I’d be a candidate for observation however a radiation oncologist recommended adjuvant radiation (photon based).

I then consulted with a RO at Memorial Sloan Kettering. MSK recommended proton based radiation and offered a ‘revised protocol’ they were investigating wherein radiation would only be applied to the neck only under the guise that should there be a recurrence it would more likely present in the neck rather the primary site (tongue). I understand the intent of trying to spare the oral cavity from radiation but I wasn’t comfortable with being part of a revised protocol approach.

I subsequently met with both a second ENT and a second RO. The second ENT agreed that my case falls in a grey area and a case could be made for either observation or radiation.

The second RO is at ProCure. We had a long detailed discussion regarding proton-based radiation but he too could support a decision in either direction.

I had a new set of scans done this week in the event I proceed with proton radiation. Both the PET/CT and a CT with contrast scan showed no signs of malignancy. These were done 7 weeks post-surgery.

I’m still undecided whether to proceed with adjuvant radiation or follow a path of observation. If I understand the numbers correctly my risk of recurrence without radiation is approximately 15%. Radiation treatment could drive the number down to approximately 5%. Should there be a recurrence the treatment options are more dire which would likely result in more of my tongue being removed and radiation at that time. On the other hand, starting off at a 85% chance of being cancer free is not a bad starting point.

I’m terrified of going through radiation and dealing with the side effects but am trying to balance that against driving the recurrence risk to as low a level as possible.

There’s no correct answer here and am struggling to make a final decision. I’d appreciate any insight from folks who had to make a similar decision.

No one can say with any real authority why recurrences happen. Radiation induced possible but unlikely. If we all had to look forward to getting a second cancer down the road from our cancer radiation treatments no one would get them.

Radiolucent areas can be lots of things, not necessarily cancer. You don’t describe this well enough but it sounds like it’s in a root. Cancer doesn’t happen in teeth. If it’s around the root I’d be more concerned that osteoradionecrosis is an issue. That is a big deal. Not cancer but really a huge problem. This needs to be pursued with someone outside of a dentist that is familiar with looking at ORN. The dark area will increase in size over time if this is it. If it’s down by the root tip I’d be thinking more of an apical abscess. If it extends down the side of a root from the crown root junction, it’s more likely common periodontal disease. Either way further exploration is in order to determine what this is. Good luck, hoping this is one of the simple choices.

My personal opinion is this is not a good idea. You’d be the first person out of thousands I’ve dealt with that I have heard considering this. Doing anything that involves radiated bone is risky for not healing properly or triggering ORN or other negative issues. While some may argue that this is a function of field of radiation and GY exposure, these dentists don’t know any of that. There are no other bone quality tests that can be done. This is all related to the loss of microvascularization in the bone from radiation which they are not going to see on x rays.

Orthodontic movement involves pressure die back of bone on one side and new bone growth on the other to granulate into the void. Radiated bone is not going to behave like normal bone and like young bone where it is the most adaptable.

If they are so confident, ask them if they are willing to accept the liability for damage to your bone if this all goes south. Note that for you and them that liability could be a fibula free flap surgery if ORN is an outcome of this idea.

In most cases patients benefit from, right from the get go, having a multidisciplinary tumor board and resulting treatment team and plan. I sat in on mine and was allowed to ask questions and comment. There were 13 doctors in mine at MDACC. There were some additional residents in attendance to learn. Some were actual treatment people out of surgery, radiation, chemo etc. but there was also a nutritionist, a psycho oncologist, and allied people even insurance and financial people included. (Being able to pay for any given treatment idea in a profit system like in this country is part of the equation) Everyone with different training and experience got to weigh in on what should be done with me to obtain optimum end results. The scans and test results were all on a couple giant screens.

They clearly had very different approaches to the plan, no surprise the surgeon favored surgery, the radiologist his profession. But until they all agreed 100% on the final idea, the arguments went on. There is little question that education and training bias exist in deciding what to do. In no big CCC does any single doctor get to determine what treatment a patient will get. It’s not what is best for the patient, and there is a lot of liability associated with getting a plan wrong. Unfortunately in the US medical system, doctors outside of bigger institutions, in private practice, are legally free to treat people they feel competent to treat, even with complex and multifaceted ideas like cancer.

The argument has often been made by many, that allowing say for instance an ENT head and neck surgeon to do procedures in the cancer realm as a stand alone provider should be limited to minor surgeries, and while most have privileges at some general hospital to have access to a surgical operatory, and they can choose the difficulty and type of operations they do there, that is not best practice medicine. Note the underlying, never said point here is, there are financial incentives to keeping a patient in your own practice. But this is how American medicine is structured.

To any ENT professional reading this, I used your profession as one example. I would say the same thing about a dental oral surgeon and many other professionals. It’s not an attack on otolaryngology.

hey guys, i'm currently in the motions of getting cleared for the removal of my aneurysmal bone cyst that began in the coronoid process of my mandible. i have to get an arterial gases test to be cleared, are these painful? i have a rough time with ivs and blood draws and i am horrified at the thought of having this done. my gp is speaking with my surgeon to try to get me out of it but just in case it does happen some advice would be appreciated.
one more question, has anyone ever done external curettage? my tumor moved up towards my eye so my surgeon has to go in thru my mouth and from the outside in front of my ear. he did warn me of injury to major facial nerves and i wonder if anyone else has gone through this. would i be making the right choice if i told him to save my nerves over completely getting rid of the tumor if it came down to it?

Great job on getting through rads without a feeding tube! Not easy. I lost about 10-15 lbs thru rads on a 155 lb 6' frame. You gotta force feed yourself things that taste like cardboard (or worse). I recall the list of what i could stomach got really short (about 15 items).

It is scary. I can recall conversations with Doctors telling me and my wife that i may not be able to speak, eat, feeding tubes for life, etc. But, good news, my life is back to full speed and has been for a couple years. It took many months though. What took over an hour to eat soon after surgery now takes about 15 min. I can recall a few of my first regular foods (like scrambled eggs or french toast) took soooo long to eat. I could barely manipulate it. I can now speak and be understood. Speech took months to clear up but i could talk to strangers fairly quickly after surgery if they were patient with me. I remember jumping on a conference call with a customer about 6 weeks after surgery and thinking let's take this tongue for a test drive! I still have a lisp and it comes and goes depending on what i eat, hydration ? not sure exactly what causes it to vary but it does.

The upshot is things kept getting better. The pace of crowns and root canals has even started to slow a little these last 6 months. Even three years out, I still slowly notice improvements in what i can taste and eat. Ketchup has been one of the harder ones for me but i can now eat it straight up on french fries (took almost 3 years).

I hope you find a good dentist. I got lucky and found a local one with some experience with oral cancer and she is quite patient and attentive. I am in there every 3 months for regular cleanings plus all the work on top of that. They know me well!

I am rambling. Prayers for no more cancer are sent your way. This cancer ride is a damn roller coaster that none of us ever knew we were in line for the rest of our lives. Hang in there.

Stay safe and keep the faith,
Nels

Thanks for the feedback and I will check out the Salivea information. Also, I did contact GSK regarding my being unable to find the tubed gel product and I was advised that they had a "distribution issue" but the product would be available again 8 February.

Bill Dozier

So with your much appreciated and detailed reply I opted for the CT scan which came back negative. Dr. Gross and Dr. Lenkowski reviewed it and confirmed there is nothing there as of now except for a mucous retention cyst. Dr. Gross said he can remove it but it may not resolve anything and is a fairly significant procedure. Every single ENT admits that the anomalies throughout my mouth including the cyst on my palatine tonsil are not pathological or anything they can deal with. He said if he takes my tonsils and my lingual which requires resection of my tongue and their is no tumor then I'm at square one without any diagnosis and could still get cancer.

So frustrating, my mouth is a hot mess, but I guess there is nothing I can do. I showed Dr. Gross the study demonstrating early diagnosis of this is almost impossible but he was indifferent. He said he has seen HPV cancer countless times times including earlier in the day (someone had a growth from their uvula). There is nothing I can do now. I have been to the three most distinguished ENT in the surrounding 200 miles.

https://health.usnews.com/doctors/brian-gross-712313

https://health.usnews.com/doctors/paul-lenkowski-625308

Are you interested in exploring treatment options before moving forward? You deserve to have all the information involved before making such a huge decision. There are many amazing survivors here that have had a similar situation to stare down and managed to get through it extraordinary well. If you feel content with your life and comfortable in your path though that is wonderful. If on the edge I think you have a wonderful shot at beating this.

Definitely do not go into too much despair until you get into staging as treatment has evolved greatly over the past two decades. Even in Stage 4 survival rates have been consistently over 50% but if early you may be able to have alternate treatment that is higher with less toxicity. There is a significant amount of data and reason for hope that this is just a huge speed bump. There are many others cancers that is not the case but with some faith and love this to shall pass.

The node(s?) in my neck and under my jaw are getting more tender and bothersome.

I still have pain and discomfort in my teeth on the L side which varies between a 0 to a 3.5 but is usually around a 1.

I think I have a sore on my tongue (like a recurring canker sore) but I think it comes and goes and maybe I’m biting it every once in a while due to changes in my mouth.

The node is worrisome and it seems to be tender and swollen for almost 3-4 months.

I’m starting to melt down.

Trying to get in for a biopsy but soonest anywhere is serval days away.

I don’t feel well at all.

Greetings & Happy New Year,

My apologies for taking this long to update, but here it is...

My 2nd ultrasound ( a much longer session, using seemingly more sophisticated equipment ), was required by the vascular surgeon I consulted.

He said my L CA was <50% occluded, however, farther downstream, where the artery bifurcates and a smaller artery branches off to feed the face, there was > 50% occlusion showing in the smaller artery. He wasn't too concerned with the plaque buildup there.

He recommended I get scanned annually going forward and that I will do.

No other issues thus far.

Regards,
Dan

Very sorry to hear about your recurrences. As I am trying to decide whether to follow up with radiation after my partial glossectomy I would be curious to know if you had any radiation treatments during any of your treatments? Thanks in advance!

Glenn

Good point, we all respond differently to these treatments. I must say I am a little surprised (based on what i read on here and my experience only) they brought up chemo seeing that your margins were clean and nothing in the lymph nodes. But, each doctor thinks differently, and i am no doctor!

Looking forward to hearing more. Stay safe and keep the faith.

Nels

Thank you for your replies.

I had my appointment at MD Anderson. MD Anderson requested the sample and ran their own testing. Both pathology reports came back with similar results. My MD Anderson doctor said I do have Leukoplakia, but he said nothing on my biopsy report or currently in my mouth points towards PVL. I do have multiple small areas of Leukoplakia, but he says that does not mean I have PVL. I have a follow up in 3 months and they will keep a watch on the areas.

I wish my original Periodontist could have handled the situation better. Even if I did end up having PVL, telling me "this is not good" and I was the first person he had seen with this in her 43 years of practice was not helpful, it made me panic.

I appreciate having this forum.