Stage 4, SCC HPV+ BOT. I've spent the better part of three years dealing with my cancer and it has all been quite an experience. When i was first diagnosed in late 2010 I freaked and went ahead to have most of my teeth pulled. That so shocked me that I began doing my research here and elsewhere on the web. And, i decided not to have chemo/rad. believing that there was a good chance I would not survive 5 years. I chose not to live this part of my life in "recovery" mode. And besides I really had no place to endure and cope with the common ailments after treatment. So, I continued what had been a pretty crobotic surgery should precedelean diet and physically active life, trying such as the buddwig flax/cheese diet and the gerson juice approach among others. all in all I felt fairly well: never any pain nor discomfort from my cancer, only a bit of public embarrassment from the swollenlymph node. but I shined that on and tried to laugh a lot, sing a bit and eat clean food and stay active physically. Now, some 3+ years after dx I'm seekiing treatment: having consulted with oncologists, robotic surgeons, proton radiation docs. And, i still remain a bit confused. So if anyone has any thoughts about whether robotic surgery should precede radiation or if radiation, and maybe chemo should be done. My oncologists disagree.

Well, the good news is that you are here, asking about this! The studies I have seen show good results for both surgery followed by chemo-radiation and chemo-radiation along.

Couple of questions

Have you been evaluated at a CCC?
What is your Tumor / Nodal staging right now?

Maria

What do your doctors agree, disagree upon? Who recommended robotic surgery, and proton treatment? Tumor board? Good luck with any other consultations.

I saw 3 oncologists at UCSD in 12/2010, when I was diagnosed as Stage 4 HPV+ BOT. AFter hearing that the 5 year survival rate was somewhere around 50%, and learning a bit about this cancer, I decided to "work" on my nutrition, and physical and emotional well being. During this time I independently learned about TORS robotic surgery and proton radiation, neither of which were available at UCSD. I finally consulted oncologists at UCLA and Loma Linda which offer one or both of these treatments. the radiation oncologist advised me that my base of tongue tumor and swollen lymph node required radiation and chemo. And likely a neck dissection. But that robotic surgery was not advisable. The robotic surgeon on the other hand is ready to operate and then also offer radiation and chemo. So, I'm at a loss as to which direction to go.

Good luck on deciding, and having options is good. I'm currently doing proton treatment with chemo, carboplatin, but previously did IMRT alone, then with chemo, Erbitux, Taxotere, and IORT twice during surgery, 5 neck dissections. If you have any questions about protons, no expert here, but it's similar to IMRT, or neck dissections ask here.

Wlildebill, I am so glad you are seeking treatment! The quality of the ENT surgeon, the radiologist and the chemotherapist is of most importance. My next concern would be timeliness!
I know you must have been through a lot to get to this point in your decision about cancer treatment and you will find so much help here by people who have similar diagnosis and treatmen plans. I am sure this journey will bring many critical questions, just know that you are not alone!!!

Welcome, Sophie

The Loma Linda oncologist said I would get 30 sessions of IMRT then 5 proton radiations. Are you familiar with reasons why the proton might be preferable to IMRT? Is the proton ever used alone? What I recall from the oncologist is that there is no evidence that it is "better" but that the patient may get less radiation from the proton
Also, if the radiation kills the primary tumor then is it likely or common that any cancer in the lymph would also be killed or just drain or shrink on its own?

If the radiation only kills the primary tumor, you are still at grave risk if cancer remains in the lymph nodes as it can spread throughout the body where it is much harder or impossible to treat. For example, my husband's treatment included the most radiation to the primary and positive node, somewhat less radiation to the other nodes on that side, and still less to the nodes on the other side of the neck. The radiation planning will include different radiation amounts to different areas on your neck. The radiation planning takes a lot of math/physics understanding, and it totally over my head aside from the most general terms - and I've had graduate level math course. Make sure your RO seems to be smart and experienced.
Maria

Marie, I'm unsure what "nodal staging" means. I'm still in a fact finding mode. Hope to see another oncologist tomorrow. Are you very familiar with TORS robotic surgery. I was told they could begin in a few weeks. I was also told that a neck dissection should be done at the same time. Do you know or have an opinion if swollen lymphs sometimes shrink on their own after the primary tumor has been removed?

I am stunned that you waited 3 years before seeking legitimate medical treatment. I would hate for any others reading your posts or signature to even remotely think that this is a good idea. Enough said.

The reason why you will get IMRT with PBT is because PBT is so precise that it cannot guarantee clear margins so IMRT must be done in conjunction with it.

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

I agree... the gold standard - is a standard... because it works.. (most of the time) as for the robotics. I had surgery followed by rads and chemo. Overkill? maybe... but I've seen the outcome turn bad when people second guess their drs, or go for a lesser treatment.

We are all individuals. We all respond differently. Some people have a cancer that no matter what they do will kill them. But for the most part, the best results I've seen have come from hitting it between the eyes with everything they offer.

hugs.

Cheryl, did you say that you first had robotics surgery and then radiation and chemo?

Don, you say that one "must trust the doctors" But my problem is that the last two docs have advised different treatments. So, I have now a consultation with a third doc at a third institution. I'm just trying to "zero in" on the best path for me. Thanks for your input.

As mentioned, if you go to a CCC or several, the tumor board will come up with the best plan of action, maybe not all agreeing, but majority will. There are as many doctor opinions out there as there are laymens opinions on here, so they will be different to some extent with surgery, radiation, chemo, induction chemo, Chemoradiation, etc. due to their education, training, technology, experience, clininical trials, professional guidlines. Good luck.

Like Paul, trust and their opinions are different traits. Cancer is not cookie cutter. Give 3 qualified doctors the same fact sheet and they can easily have 3 different rationales and recommendations.

Generally, they follow the standard of care as defined by NCCI guidelines. But these therapies fall pretty broad umbrellas. Each patient has unique characteristics that once factored in produce the variability so often found in the recommendations.

Tumor board and second opinions validate your case. Even though they may have different finding, it is reasonable you trust all the providers, individual and facilities.

Bill. I had regular surgery (by the top guy in Toronto - who is also the head of the head and neck oncology departmant - at the TOP cancer center in Canada. However. I would NOT have had surgery if it had been HPV related cancer - which is what yours is. The first line of defense for your type of cancer (because it responds really well to chemo and rads) is actually chemo radiation.

I had a follow up of chemo and rads as a secondary treatment because my cancer wasn't HPV related. And despite my surgeon's certainty he got it all - he wanted to play it safe and throw the works at me (because I am not a smoker/or drinker and was fairly young) I trusted his expertise in the matter as this is ALL HE DOES for a living. (amazingly complicated head and neck cancers) He consulted with the rads and chemo team and told me his recommendation, and the radiation dr. said the same - so I when for it.

and so far so good.

hugs.

Cheryl, that's interesting about the not having surgery part of your hypothetical. I've read many instances here on the forum of people being treated only with chemo and rads for essentially the same kind of cancer as mine. But at the time of my diagnosis - exactly 5 years ago, maybe even this week (!) - there was never a question of them not operating.

Now of course I didn't know anything about OCF at the time and was as we all are more or less numbed by the news. Also didn't have anyone else to help me out, i.e. partner or knowledgeable friend. So I went with the docs' recommendations (RO, MO and ENT) and have always trusted them and have never second guessed them. At the time, and today, I consider myself fortunate to have been able to avoid chemo.

But I wonder if had I been better educated I might have tried to push for avoiding surgery. Or is it just that in the last 5 years the trend for HPV+ SCC has been moving away from the neck dissection. Interesting points, and of course for me now moot.

Bill,

I had TORS followed by 6 weeks chemo/radiation. I was treated at Johns Hopkins, the #1 for H&N cancer. That being said, I too had a different recommendation prior. I'm here and thus far cancer free so that's testament to the docs at JH.

Positive thoughts and prayers

"T"