Tony,

The side of your mouth/throat that you have the tumor on will receive the most bombardment during radiation tx. That side will probably have more damage with regard to your salivary function. The other side should be less damaged and will hopefully pick up some of the slack when you start healing over several months to years.

That has been our experience here...Bill's saliva is pretty good now. He has trouble with food sticking in the right upper side of his mouth (between gum and cheek) while he eats but for the most part, he has adequate salivary function. I think you probably need to focus more on swallowing...that seems to be the function that is more affected during and after treatment longterm.

Everything is subject to change, and often doctors may not agree on evertyhing, and there are different types staging, restaging, from clinical, pathological and surgical. The surgeons sometimes don't know the extent of surgery until they get in there, and if they can't get it all without clear margins, is more extensive, they will take out what they can, and leave the rest for chemoradiation or radiation. The BOT has deep musculature, not just surface, contained like the tonsil, and removing a tumor from there can be debilitating. As mentioned, get a copy of your medical records for your own file. I'm surprised no chemo either, and only 33 rads, not 35, but depends on the delivery method, Gy, fractions too. As for IMRT, and the salivary glands, IMRT has dose painting, and can avoid that structure, and usually keep the dosage under 30Gy, usually around 26Gy, to the salivary glands, to protect it, anything higher may permanently destroy it being over its total toxicity level. Are both sides, bilaterally, being treated? That makes a difference too if one side is not treated with rads. With HPV it seems some are reducing chemo, radiation, but not everyone is.

Good luck.

David and Deb:

Thanks for your remarks about salivary function. I do believe RO said yesterday that right side radiation won't be as intensive as left side, so maybe some salivary glands will be spared.

Now as for concurrent chemo; RO said yesterday he is not recommending it right now, but don't rule it out either. I think he may just wants to watch that lymph node and see how it responds to rads before commiting to chemo.

Thanks for caring guys, it really helps.

Got to go, it's off to simulation appointment.

Tony

I assume they will be radiating both sides of your neck.

Okay I have to ask what Christine asked... Are you being treated at a CCC? From what I understand you are T2N1 and you do not have clear margins. To me that indicates you should in fact have chemo and rads. Chemo is meant to soften up the tumor so when rads hits it it will cook it nicely. Chemo also - while not able to kill the actual tumor is effective on microscopic cancer. I would definitely push for the chemo and ask why not (I imagine there could be mitigating health issues but I would still want a specific answer)

good luck.

Ditto to what Cheryl says.

I started with induction chemo with TPF then followed by chemo and rads. There will never be a day that I second guess if all the bases were covered and treatment was aggressive as possible without literally killing or maiming me.

The logic went induction chemo would immediately start on the tumors (BOT primary and multiple lymphs) which it did. After each infusion, there was obvious visible reduction in the neck mass. The final report stated near or complete resolution. So we did as much as possible the got the best possible results. I felt if there was any loose micro cancers the chemo killed it off.

Next rads would blast and direct kill the primary and neck nodes, assisted by the carboplatin. Again, this treatment was given all guns blazing and I feel it killed the tumor mass cancers.

Carbo during radiation improves the performance of the rads and at least to me might kill off any micro cancers still hiding out.

The combination is one I feel should be given nearly all the time, if nothing else, peace of mind for the rest of your life that you treated as aggressively as possible and never have any doubts or second guessing.

Okay, let me try to answer your questions/concerns.

Yes, I have a copy of all my medical records except for most recent office visits. I will get those shortly.

No, I am not being treated at a CCC of which there are none in Arkansas and I am unable to move to another state at this time to get to one.

The VA is the only medical coverage I have. To abandon them at this point is not an option as that puts me into the pay as you go group for what I figure is exorbitantly expensive (potentially bankrupting) treatment.

The RO says he sees one enlarged lymph node (about 1cm size) on same side as tumor. He says it's "of interest", but obviously not of enough interest to require a biopsy or chemo at this time. He did say to not rule out chemo in the future, but right now we are going to start radiation.

He is a Radiation Oncology Diplomat of the American Board of Radiology and has being doing radiation oncology for over 20 years, so I don't feel I'm working with a newbie. No, I haven't yet looked up what a Diplomat level experience level signifies. It could indicate anything from a brand new member, all the way up to highly experienced, highly respected. If you guys know anything particular, I'd like to know.

Christine and I have discussed this a little already. One thing she mentioned has kind of stuck with me, and that is do you have confidence in your doctors. If you do, then continue down this road, if not then change something.

I have only met with this RO once for my initial consult. Yes, he brought up that he didn't necessarily agree with everything I thought I had been told by ENT and surgery staff (who are at a different hospital). He could easily have withheld his disagreement and just parroted what they all said. Had he done that I would feel more comfortable, but if they were wrong in any way I wouldn't know it. So, I'm actually glad he disagreed as in essence he has given me a 2nd opinion. While I don't like having to now determine who is right, who is wrong, what do I do next, I would much rather know about it right now than a year down the road when maybe the cancer has spread and become much more dangerous.

So, I guess the bottom line as of today is yes I have confidence in this RO and I'm going to stick with his recommendations for at least the short term.

I will ask him next visit why he doesn't recommend chemo or biopsy right now and what is he looking for to change that recommendation.

Any other questions you think I should ask, I'm all ears.


thanks guys for caring

Tony

IMO if chemo is going to be considered it should be considered concurrently with the rad not if the rad doesn't work.

I never did hear you say if they planned to radiate both sides of the neck.

I understand your situation with the VA but if you were being seen by most any CCC they would be radiating both sides of your neck and recommending concurrent chemo/rad even with the HPV confirmation so I might be pushing them a tad harder. Remember your RO is not an MO. JM2C's

For all that it is worth, I am also T2N1, treated at a good CCC (Johns Hopkins), and I will be also receiving rads only, no chemo. Not 100% sure, but pretty certain they also mentioned radiating one side of my neck only.

I will admit that it makes me nervous, especially when reading here that the more aggressive treatment should be pursued, but I am trying to let go and trust my medical team, otherwise I will go crazy.

Ive sent you a PM with more info. When fully explained, the situation appears to be much different than what I first understood. This changes what I would advise.

Even though Ambra's situation may "on paper" appear similar, its really a whole different world away. Every single patient is a new case and varies sometimes only slightly from other patients. In this situation since I dont see Ambra as listing HPV+ as part of her signature then her disease is completely different than Tony's an cant be used for comparison.

Your doc sounds like they are on the ball and being very thorough. I like how they were not afraid to speak up and review everything with you instead of being a parrot. That shows their integrity.

I wouldnt rule out chemo, maybe seek out a MO and hear what they have to say. Besides that, put your trust in your doc and try to stay busy and not second guess everything. Dont let cancer teal this time away from you, go out and live your life, all too soon your health situation will change and you wont feel quite so good so do everything now.

Best wishes!