Thanks for all the well wishes and advice.

I'm being treated at Sloan Kettering. I should hopefully hear back on the hypoxia scan and the HPV on Monday or Tuesday. I'm starting IMRT and cisplatin on Wednesday.

A question for the group here: Is proton therapy used with this type of tumor? I wasn't recommended or offered it by any doctor at any of the NYC cancer centers I went but it seems like a pretty interesting therapy if they are able to target the radiation more effectively and save non-cancerous tissue.

One very frustrating and worrysome aspect of the pre-cancer diagnosis period was with respect to my diagnosis communication. My primary care doctor recommended a core biopsy and a follow up with an ENT. The biopsy was done on December 20th, 2012. I tried to make an appointment with the 1st doctor that was referred but was unable to get an appointment until mid January. I called and asked to get a second referral in order to see someone earlier. That doctor could only see me on Jan 8th. The pathology report was completed and discussed with my primary care doctor on December 28th. My primary care doctor called me at some point to ensure I had made an appointment to see the doctor, but no mention was made of any urgency. When I arrived at my appointment on Jan 8th after having picked up the pathology report and reading it, I discovered my primary care doctor had referred me to a urologist. I was fortunately able to get an appointment within 2 days with a surgical oncologist and move forward from there. I'm just shocked that my doctor wouldn't tell me that its urgent or push for an earlier appointment. I'm surprised they didn't ensure I was seeing the correct doctor or communicate some sort of information on the diagnosis to me. It was 21 days from biopsy to seeing a surgical oncologist and 13 days from when my doctor knew of the pathology report. Hopefully that delay did not cause any issues with my treatment.

Only a dozen or so places have Proton therapy in the U.S. It's expensive to build, large, and is twice as expensive as other EBRT technologies. The only place near NYC I heard having it is ProCure in NJ. None of the hospitals in Manhattan have it, that I'm aware of, and looked myself 6 months ago. To my understanding, new radiation technologies do not need to have extensive Clinical trials like Chemo does for FDA approval, and just has to meet current standards under FDA 510(k) clearance that it can do the same type delivery it is meant to be used for, so that may be another reason why some are waiting.

Glad you received a copy of the pathology report, and noted the errors made. That seems unusual, but you have to be your best advocate, as you probably realize.

Good luck on Wednesday!

Andrew:

Wow: a urologist instead of an oncologist referral: guess his staff misheard his instructions. If you type in "proton therapy" in the search box with the quotes (over to the far right side of your screen ) the threads on that pop up. Basically it sounds very good, and one poster here, Jim who had it in NJ liked it. There is an issue that it may be a little too focused for oral cancer cells so that in might let some cells get away. It was moot for most of us since as Paul noted, very few places have it.
It is scary and frustrating how long it takes from DX to TX
Charm

We went months being jerked around because nobody would listen to me and Kevin was in complete denial. The docs all said there was very little chance it could be cancer because he was not a drinker or a smoker. It took from April to July for a diagnosis. By then it was StageIV. He went from the one large node in April to the whole side of his neck having swollen nodes all the way down to his cervical collar. I was fuming and they knew it. We left that ENT and moved on. Here we are, moving on and living life.
Hang in there and try not to stress about what has happened. You need positive vibes right now!!! Look forward and press on!
Kathy

Well good news came back. It is HPV+ which is a relief. I had built up an expectation of HPV+ and when the fna came back not being positive it was a bit of a shock. Anyway, I guess the take away here is it seems a fine needle aspiration can be inconclusive for HPV and a core sample may be required to determine HPV status.

Kathy, yeah I went through a similat thing. "It can't be cancer, you are too young." We went from infection to thyroid issue to lymph issue.

The proton therapy seems interesting but it is too late for me, ill be starting tomorrow.. Yeah I had read some of the earlier threads, but it didnt seem like a common treatment, at least from the posts here.

HPV+ is good news! Usually HPV+ means it responds better to treatment and has less of a chance for recurrences.

Stick with us and we will help get you thru this. Good luck tomorrow!!!

Hi, Andrew - I am glad you are moving forward, now. I think that the holidays slow things down. You will be in good hands at Sloan-Kettering. Do you have someone around to be your caregiver and make sure you stay well hydrated and fed throughout the treatments?
Maria

Andrew,

Good luck on the treatment. I have just went through it, and it is no picnic.

1) You will need help. Driving on chemo is doable but I don't recommend it. For me it was a no way. Another set of ears in room with the doctor goes a long way on getting it right. I had my wife with me on every visit. Someone needs to push you hard. You will have no appetite and it will hurt to eat but you must.

2) Chemo plays tricks on you. Create a log sheet of drugs that you take and when. Believe me you will not be able to remember what you took and when. Take the pills as recommended. Getting behind is the problem. Taking them after your sick is too late.

3) Get some boost, Ensure, other liquid drinks and start drinking them now and go as long as you can into treatment. At some point you might not be able to swallow but a few sips of water. I, and many others, had to get a peg. It sucks, but it works. It may take a week to get it, so don't wait until you can't eat or drink, you will have to make that call before then. Every day got worse until about 3 week post rad for me.

4) Post often and ask questions. If you don't post, we can't help. Somebody here has been through just about everything. I really pity the people that had to go through this blind.

Andrew, when my husband started treatment and was still eating, I used to record the amount of fluid and calories he was taking everyday. This was the only way I could tell if he was getting enough of both. Your appetite as well as your ability to drink will be impacted. Don't wait until your weight goes into free fall before tracking. It will be very hard to make your way back at that point. We were also advised to have him drink a couple of bottles of Ensure a day so that he would get the essential vitamins and nutrients. That was all before he got his PEG tube.

When you start the painkillers, make sure you ask your doctor about the bowel routine. At our hospital, they have a bowel routine that is a four-step program. In treatment, the body is on a delicate balance, a bit too much laxative and there may be diarrhea and dehydration can result; too little laxative and the body may get horrible bowel cramps. It sounds complicated but you will get the hang of it.

Good luck, you can do it!

Thanks for all the suggestions.

I will have my amazing girlfriend around to take care of me and force me to do things I dont want to do. I live in Manhattan so only a subway ride or cab to sloan. It seems like a great idea to keep a log both of medicine and nutrition and we will be doing that.