Well, the local tumor boards have weighed in, and the surgeon and radiologist both sat us down to discuss my options.

They both say that it is about 80% / 20% whether it is gone or will come back, since I only had tongue surgery so far. I have three choices: just walk away and consider it done (none of the local docs favor this), have lymph node surgery as a preventive measure even though the scans were good, or do radiation to further zap the tongue and lymph nodes.

I don't really feel comfortable with any of those options. Walking away is scary, but causing further and potentially unnecessary damage to my body seems like a bad idea. Plus I would still have the HPV virus, right?

Getting very frustrated right now. It shouldn't have to be this confusing!

Sorry if this is mixed up. Typing on my tablet is a nightmare.

Kristen

Out of the three, I would do radiation, and throw in the neck dissection for good measure, if I could. The nodes are clear, so far, and lymph node surgery can always be done in the future, if necessary. You will always have HPV, if positive, since it's a virus, but I don't know what tentavly means, unless their waiting on HPV testing results from the biopsy, which I doubt, being the tumor board met for the treatment plans, and if the primary is in the tongue, it's unlikely to be HPV involvement, and may not even tested for it. Do you know your TNM grading. Sounds like T1 or T2N0M0.

Good luck with your decision. Having choices are always good.

Sorry, I need to update my signature. It is definitely HPV. I think the tumor was a T1 by the size. The docs think it should be rads or surgery but not both. The rads seem to cover more possibilities. But it just feels like this will haunt me regardless.

Kristen,

You sound like you have a good rapport with your medical team and tumor board. What did the tumor board recommend? Generally, the principle I was told was to hit it hard the first time, you do want to minimize every chance of this coming back.

Then again, it is not entirely clear what happened the first go around. If you had a small tumor on your tongue and that was full removed with clear margins, then maybe there is a good chance it has been removed.

If nothing shows neoplastic activity in the lymph then why go there? Seems like a bit of a hunting expedition.

Radiation is no walk in the picnic by any means but it would make sense to radiate the area where the tongue tumor was removed as that would likely be the highest chance of ensuring no cancer lives on.

Doing nothing did not seem like a hot idea so that means everyone has concerns something may be still lingering around, just not sure what the best way to kill it off is.

best to you. don

That's the thing, both tumor boards agreed something should probably be done but were divided on which route. And yeah, I do not quite get the lymph node surgery, I should question the doc about that again to see what I am missing. Anyway, apparently I hit a lot of iffy issues . . .size of tumor, debate on margin, HPV+ but no risk factors for having acquired it, stuff like that. So they don't quite know what to do with me. That happens a lot in my life, I am used to being odd, but it has never been a life-or-death issue before.

We are considering a third opinion too, but I expect it will be the same.

Did they find it unusual HPV-16 was in the oral tongue? Most, 90%, is in the oropharynx such as the tonsil, BOT. Did they do an endoscopy to check the tonsil and BOT with biopsy? Also, HPV positive only shows treatment and survival benefit in the oropharynx, not outside this area for some reason. Possibly not enough studies, one maybe more involved with smoking, carcinogens, idk.

Lymph node dissection is controversial in the N0 neck, even with N1, N2 didease and depends on the size, thickness, location of the tumor, margins, pathology, and other factors to treat or not, and each doctor is different. There are NCCN guidelines that may or may not be followed. Also, the key to survival is controll of the primary, and lymph nodes, wether radiated or surgical removed or both. There are no set rules, and every situation is different. Are you the same person that the tumor board were arguing about the clear margins?

NCCN guidelines for Oral T1N0 disease is resection of the primary, and ipsilateral or bilateral neck dissection, based on the tumor thickness or Radiation Treatment.

Good luck with everything.

Was your primary in the BOT. Is that what you mean when you said tongue because as Paul stated it's very unusual for HPV to be associated with oral cancer in the forward part of the tongue. In fact I don't remember anyone coming to this site with that presentation.

Re the ND option. Did they say both sides or just one? If one, why did they pick that side? Options #1 & 2 don't make sense to me as a stand alone. Even option #3, rads, why are they not recommending concurrent chemo IF they were recommending Option #2. I would want to ask them more questions BUT if I had to choose among those 3 I would opt for #3 assuming they would include both sides of my neck in the radiation field.

Here's the deal - tongue cancer is tricky - even a T1 tumor can seed to the nodes - the scary part about this is if its microscopic it doesn't show up on a scan of any kind, it only pops up once it has reached a certain size. It has happened numerous times where a dr. removes a tumor says you're cured go home only to have a node pop up later. And depending on how aggressive it is at that point it could be a chase to catch it.
Weighing the damage and recovery time of the two I would at this point go for the neck dissection (to be honest in my desire to make sure they got it all I would request both - but that is not an option for you) so being that often the next pace this cancer heads is to the nodes, and that the fallout from radiation can be life long, and debilitating, at this point the surgery would be a good choice.

A neck dissection is relatively painless - they cut the nerves there so you are pretty numb afterwards - they also cut a muscle so your arm and shoulder will be wonky for a bit, but recovery is quick, and other than some swelling (which you can see a lymphatic massage therapist for) and the arm / shoulder issue (which you will regain if you go to physio for a short period and continue to do your exercises at home for a few months) you will walk away relatively unscathed.

I'm 26 months out of treatment - in three days - and my arm is 99% I even play baseball now with no issues whatsoever. That 1% is just because I am a tad weak in my hand and opening really tight jars can be fun - or carrying super heavy bags. Other than that it feels great!

Radiation on the other hand is very much considered the gift that keeps on giving. The fallout includes : long term taste difficulties (during treatment things taste funny then you lose all taste period. It does come back eventually but not necessarily all or normal. My sweet taste is still minimal - not necessarily a bad thing - and salt too - processed foods taste like crap - I can taste the chemicals in them still - I am a vegetarian so I eat pretty healthfully but still some foods are unpleasant.) I think tongue cancer patients may be more affected by this because the rads is often aimed directly at the tongue where most of your taste buds reside. So BOT, esophageal, laryngeal cancers may regain their taste better and faster. Radiations shrinks tissue and causes fibrosis. Likely because you haven't had a neck dissection they will cook at least half of your neck, and your tongue area. This can cause tightening of your esophagus, which leads to difficulty swallowing - particularly dry foods, tightening of your jaw ligaments and muscles which can restrict how much you can open your mouth, and atrophy of the swallowing muscles and / or epiglottis. It also causes damage and compromised blood flow to your jaw area. This can lead to osteonecrosis somewhere down the road. Particularly if you have any kind of dental issues. Often beforehand they will makes sure you are keeping your teeth, and pull any that are sketchy. This is because removal of a tooth post radiation is a special kind of nightmare involving hyperbaric chamber and 20-30 dives. If this isn't done you could end up needing a jaw replacement at some point.
Radiation effects your salivary glands - during the end of rads you are drooling like a mastiff - then at some point post rads you lose all salivary function and its like the Sahara in there. Most people do regain some saliva back but that is dependent on the path of the radiation and your ability to heal. The lack of saliva also effects your teeth. You will be given fluoride trays and be expected to use them the rest of your life if not you will have dental issues. And that leads back to the tooth pulling and jaw replacement and so on.
Also even if you recover okay (I was blessed, I recovered okay without a lot of the nightmares most face) your mouth still tends to be sensitive to certain things - for me it's spice, still two years out spicy stuff burns like hell. Vinegary stuff, mayo, salad dressing pickles, burns and often causes sentive patches. My mouth is very sensitive to irritants of any kind.

I'm sure there are more things I've forgotten to mention - beyond the trauma of the last 2-3 weeks of treatment (which at best is horrible) and the first 2-3 weeks of recovery (radiation continues to work for a least 2-3 weeks post treatment so that is the worst time for a patient.) for rads you may need a feeding tube as well, and depending on your genetics, the path of the rads you, may lose some hair. I lost all of it from my ears down to my nape -and it thinned all over my left side to my crown - it does grow back and really when you are fighting a life threatening disease its nothing, but for a woman it's a hassle.

Most importantly - if they do a neck dissection and somewhere down the road you do have a recurrence you still have radiation as a viable option. They can radiate you twice, but that causes an amazing amount of damage.

Drs sometimes don't give you the gory details - in this case they should - that way you can make an informed decision - and know the lasting effects both treatments can have. Best of luck!

I apologize for anything that sounds vague. I promise, it is just a reflection of what they tell me.

Yes, they were arguing my margins, but the surgeon is pretty confident and I do trust him. The tumor was at the very back of what they still consider the front half of the tongue, yet another area where I am borderline.

The rads would be tongue and neck, I believe, and just the one side.

The surgery would be 'modified neck dissection' which I gather means he plans to spare damage where possible.

And aside from having HPV virus, I don't have any known risk factors like smoking. I do think the extreme nausea caused by my panic disorder no doubt set up some damage though. I don't see how it couldn't, since I tgrew up nonstop for a few years.

I think that covers the questions y'all asked. I really appreciate the information and kindness you've given!

Kristen

A Modified Radical Neck Dissection, MRND, is the same as a Radical Neck Dissection, RND, except it preserves one or more structures typically removed during a RND such as the neck muscle, vein and nerve, and sometimes level V. A MRND, usually removes levels ll-IV lymph nodes for thd oropharynx involvement, but with oral tongue and cavity, level l also since that typically is the first node for metasteses, but there can be skip metastees in any case.

Hi Kirsten

Such a tricky thing to deal with. Mine had spread to my right neck nodes and they picked up maybe 4-5 on scans (ultrasound and CT) so did a right ND. Turned out there were 9 if them so those scans obviously are that great in detecting them. I'm getting rads and chemo now to zap whatever's left but have also been given the all clear by a PET CT scan now too which is the best for picking up any small malignancies. Mine was HPV+ and BOT.

In your shoes I'd definitely do radiation since it zaps the microscopic bits and ask a lot more questions. Have you had a Pet scan?

Good luck in this difficult decision.

Mel.

You said "aside from having the HPV virus", are you saying that you had/have HPV as a result of a Pap smear and because of that you think your oral cancer is HPV related?

No, the HPV thing came out as part of the biopsy results.

OK so they did test your oral cancer slides for the presence of HPV and determined it was positive.

Very odd but anything is possible I suppose. This disease is a conundrum

Totally. I think that is why the docs are confused. I "shouldn't" have this, so they want to treat to kill stuff just in case, even if there isn't a clear need, like the lymph nodes being fine on the scan. I am glad I can read here to get more information. It at least enables me to understand what they are saying, and not saying.

I don't understand why the surgeon did not discuss the option of possibly doing a
neck dissection at the time they found out extent of tumor
when they did the tongue surgery so you would not have to go back twice.

Regardless I would consider the neck dissection option only at this point.

Make your surgeon is EXPERIENCED with this kind of surgery.

I first went to a very fine ENT capable of surgery but was not a cancer specialist.
He was going to only remove the tonsil then I'm guessing after the biopsy recommend
radiation and/or chemo.

Subsequently I went to a cancer specialist who did the surgery to remove my toncil and included a ND .

Get a specialist cancer ENT surgeon.

Definitely look for someone preferably at a CCC - because they deal with this cancer all the time - and I agree, the neck dissection and tumor removal should have been done at the same time - the neck dissection isn't that bad a surgery just a lot of swelling and numbness and some drains for a few days. Hugs