I don't think the nodes will shrink on their own or will become non cancerous if just the primary is treated or removed. The nodes need treatment or surgery too.

I remember you and I remember that we all advised against this healthly lifestyle treatment you were considering and of course I'm shocked you're here posting 3 years later after no traditional Tx. I'm also pleased you are now considering this traditional Tx. Gary is our radiation expert so please listen to him.

Bill,
Staging is T (Tumor, depends on size and location) N (Nodes, depends on size of cancerous nodes, number of cancerous nodes, and whether they are on one or both sides) and M (distant spread). With the advent of proton therapy and TORS surgery, we have the possibility of getting better cure rates with less long-term impact. However, we don't have a lot of data on exactly which of the newer protocols is best overall, and which is the best for a specific person. You might ask your doctors about early TORS results with radiation follow-up versus standard IMRT/cisplatin - I think they are looking good based on initial results.
The thing is, you are going to have to trust someone, sometime. Once you pick a team, go with it.
Maria

Hi bill - Alternative medicine is NOT a cure... but the fact that you are here is a testament to the fact that it did help (increased immune system response? Increased overall health). Otherwise you'd likely be dead by now. It's possible it slowed the progression. I would be very interested in knowing how your staging has changed from 4 years ago.

Ideally Bill, you need radiation and chemotherapy. The rads should be to your tumor area and the lymphnodes of the neck. Chemo should be used in conjunction with radiation as it sensitizes the tumor and any cancer cells so that the radiation is more effective. If this treatment has not been suggested - see another ENT.

The lymphnodes are a portal to your entire body. It runs parallel to the circulatory system and is systemic. If there is cancer in a node it can and will travel to other locals - bones, lungs, hips, vertebrae etc... NODES AND TUMOR HAVE TO BE TREATED. Even if a scan says you have no nodes involved - any ENT worth his salt will recommend hitting both areas as microscopic cancer can hide in the nodes and NOT be detected on a scan.

I repeat - just because the tumor gets cooked. Cancer in the nodes will NOT resolve itself. It has to be treated too. I have known people who've been cured of their tongue/cheek/BOT cancer - in situ - but because it managed to escape through the lymphatic system - they found it in the ribs, vertebrae, hips, and lungs. Once it starts to move beyond the primary tumor site - it becomes VERY HARD TO CATCH.

It's like having childen... once they pop out and move beyond the infant stage... they are HARD TO CONTROL because they are independent and can MOVE.

Do continue eating healthfully and keeping your immune system primed - this can ONLY HELP during treatment. But also clear any supplements with your radiation dr. prior to commencement of treatment as some of them (antioxidants for example) can actually work against radiation.

best of luck.

Gary, do you have any opinion about robotic surgery to be followed by IMRT? And, about PBT: is it customary that the PBT follow the IMRT?

Paul, does it sound like a sensible strategy to first have robotic surgery on the primary BOT and forego a neck dissection at that time but instead have IMRT? Then, if the neck tumor is not shrunk and killed by the radiation to then have a neck dissection?

Hi David, thanks for the comment. Times change all things, as is said. It's not that I thought that I myself could kill this thing, it's more that as I learned a bit about this I was somewhat "taken aback" that the three oncologists I saw at a prominent CCC did not inform me that there was such a possibility as robotic surgery, proton radiation and clinical trials on therapeutic vaccines. I don't begrudge them at all. Each seemed extremely bright. But as i learned more I somewhat stubbornly came to the realization that what I was doing was not killing this thing and that i needed to make a decision about the alternatives available to me.
So that brings me to my question: one doc says robotics is not appropriate and the other says it is. Now, I've put my interests back in front of you at this forum for some info and guidance which I'm very grateful for and which has been helpful to this point. Soon, I guess I'll also consult a third doc to try to help resolve this issue.

Thanks Maria, for the staging info and for putting this in "perspective".

Hi Cheryl, yes. Radiation and chemo have been suggested as the "gold standard" using the term of one oncologist. It seems that most cancer survivors and docs alike favor radiation I guess because they are more familiar with it. Is that fair to say?
Still, I seem to be leaning toward robotics, followed by radiation and maybe chemo as well.
In any case, as serious as such as this "is"; nonetheless, it has been quite an adventure.

Hello,

Being brief. You are not a doctor and nearly all of here are not either. Any who are members are not able to properly diagnose you so can not advise on recommended treatment for your case.

It is late but very fortunate you have turned to proven medical science for resolution. You must trust your doctors. If you don't, first thing is to seek new ones whom you trust with your life as that is literally what you are doing.

Then once they are fully up to speed and informed and your case has gone to tumor board, follow their recommendation.

It really is that simple now that you are seeking scientifically proven therapies.

Good luck,
Don