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.