Hi everyone. I thought now that I have a treatment plan put together I'd move over to this forum from "Introduce Yourself".

After consulting with the surgeon and RO, we have decided on Trans-oral Laser Microsurgery (TOLM) to take out the right tonsil and tumor -- with real-time pathology for managing the margins. He will also do a right neck dissection to remove the 3 lymph nodes that showed up on the scan, plus anything else that looks suspicious.

This will be followed in 4-6 weeks by either radiotherapy or a radiotherapy/chemotherapy combination. I�ll be getting 60 RAD units if they don�t find escaped cells and achieve negative margins, or 65 units with cisplatin otherwise. If we go the chemo route the RO would give the chemo weekly throughout the radiation term, which seems to be the new conventional wisdom to maximize benefit and minimize side effects. With chemo, the RO is also in favor of a PEG tube, but my surgeon isn't a fan of that because he's seen better swallowing outcomes by not having the tube. That's a conversation for a couple of weeks from now when we have the complete pathology results from surgery.

The follow-up treatments will start about 4 to 6 weeks after surgery, including a week to plan the precise treatment plan, make the mask, etc. This will put the start of RAD in late May, with completion around the first or second week of July. I already have the flouride gel carrier and all dental work taken care of, so we're ready when it's time.

From everything I've read here from others' incredibly informative posts, I'm in for a challenging summer. I'm very lucky to have an super-supportive wife to help me through this, and enough paid time off of work to manage the inevitable absences to recover from surgery (3 weeks planned) and to deal with radiation/chemo (whatever that takes). I'm also lucky to have found this site with all the information and encouragement anyone could ask for. Our daughter, son-in-law and grandson are coming back from California for a mini-vacation starting tomorrow, so we're really looking forward to that.

I'll check back here for advice and comments leading up to my surgery a week from today, and post the results of that as soon as I get back from la-la land. I have to say that I feel pretty good with a solid plan in place and treatments about to begin. Wish me luck!

I will say in my unprofessional opinion that I am pro-tube even though I hated the damn thing...

I have no swallowing issues 1 year out. But I do recall that trying to feed orally would have been extremely difficult pain wise given the rawness of my mouth and throat.

Not to mention taste issues which I don't honestly believe is a indicator to get one but everything but filtered water was horrid around the 4th week of radiation until about 1.5 -3 months post treatment.

Welcome to the family, Peter. Very often, what makes it difficult for a patient to swallow during rads and chemo is not a lack of will, but the pain that is associated with mucositis and the lack of appetite/nausea as a result of the chemo. If the patient's pain threshold is high, then by all means forego the PEG, but if there is doubt at all, then having the PEG to fall back on is a good idea. That's from my caregiving experience.

Hi, Peter
Glad that you have everything all scheduled. I am certain my husband would have gone for the surgery as well had it been available to him.
I'm sure your doc's have already mentioned it, but avoid supplements (especially vitamin E) once you are in radiation. People forget that things that help your body heal from radiation can also help the cancer.
It will be a rough summer, but you will get through it! Remember to say yes to offers of help - it is going to be hard on Deb too, and she might like a day off with friends from time to time.
Best wishes for a wonderful time with your family this week, and keep us posted.
Maria

Welcome Peter.

Sounds you are really up to speed with doing your reading here and getting informed about the process and typical side effects and pretty rough ride through treatment. Feel free to post on your specific issues as they arise. I asked a ton of questions, being one who wants to know every detail and go in eyes wide open.

"but my surgeon isn't a fan of that because he's seen better swallowing outcomes by not having the tube." Not having a tube makes eating a whole lot more painful but there are fewer long term swallow related issues. Seemed like a no brainer to me to give it a try and eating was painful but in the grand scheme of pain, this particular source was not all that much a big deal. You'll get both sides on this topic in plenty.

Well, it has been 22 hours since they wheeled me down for surgery, and based on how I felt when I got back to my room here I can't believe that I'm up to this. But I figure it will make an interesting read for me once the Oxycodone wears off.

Surgery took 4-1/2 hours instead of the scheduled 3. Not sure why. They got good negative margins on the tonsilar tumor, and said the lymph nodes "looked good" - whatever that means. We are supposed to get the pathology results back on that Wednesday. This will be how we determine whether to add Cisplatin while undergoing the radiation treatments.

They are keeping me in here for tonight again, based on wanting to watch one edge of my tonsil incision. And it's probably a good idea because although I'm feeling a lot better than I did last night, it's still a little rough and wobbly. And by staying in here I am also de-stressing Deb, who won't have to worry about a midnight drive to the ER if I start to bleed.

As you guys who've been through this already know, my throat hurts like H-E double-toothpicks when I swallow. But swallowing I'm doing - some apple juice, some gelato, and a couple sips of chicken broth so far. With that progress they've taken me off the saline drip (yay!) and given me more mobility because I now know how to disconnect/reconnect the suction for my neck incision drain tube. So now I can pee without calling for a nurse. That bit of independence feels pretty good. The only downside to all of this is that with the IV drip removed I am having to swallow a lot more to keep hydrated, but I'm getting used to how to do that in a way that minimizes the pain.

I'm gonna' stop here because this is about the extent of my concentration at the moment. But I just wanted to check in with you guys and thank you for all the encouragement. It has made a big difference to me.

Sounds like you are recovering remarkably well!

Im amazed at how well you are doing. You went thru a major surgery and are rid of the IV already. I cant believe you have the concentration to post. Keep up the good work

Woo-hoo! They just pulled the neck drain tube out. Deb is on the way to hear my discharge instructions. Going home in a little over an hour.

One thing I found that works really well for my raw throat: They let me take Tylenol in between doses of oxycodone. I had a slight fever last night and they gave me some. It is in a 20ml suspension -- thick. It coats the wound so that I am only rating pain on that at a 3/10 (before it was an 8 or so). So I think I'll be looking for some of that at the drug store.

Hi, Peter
glad to hear you are doing so well and the margins look good. Now, PAY ATTENTION to the instructions regarding post-op limitations on lifting, activity. The tonsil area in adults has a LOT of vasculalarization, and you don't want to distress Deb(more then she is already) by springing a leak
Maria