I had an excellent meeting with the staff at Sylvester Cancer Centre in Miami earlier this month which convinced me that they were the route to take - I was getting nowhere trying to get treated in Canada.

Turns out that I got very good advice from my rad onc in Toronto who urged me to seek IMRT treatment in the US.

The fact that I could get my preferred treatment at Sylvester - IMRT - and also stay for free in the Cancer Hospice a few steps away. just made the final decision a no brainer.

Because I have no insurance they were very helpful in providing some substantial discounts, which will mean, barring complications, that I will end up paying quite a bit less than $100K.

I had my simulation last week and will start the first of 35 treatments this coming week.

My doctor is not starting me out with a PEG tube. His opinion seems to be that dependence on a PEG can easily occur, so unless it is really warranted it's better to keep eating the old fashioned way. I am of two minds, having read some of the comments expressed here, but I will go along with him for now.

My wife will be joining me on Dec 15 (hope I can hold on until then on my own). It will be a difficult Christmas away from home and the kids.

Thanks to all who offered counsel and advice. I know this is likely to be an unpleasant experience, but at least now the process has started and I now have a definite plan going forward.

Will keep you informed of my progress.

Best,
tower

Good luck to you Tower! I had IMRT also and didn't get a PEG tube either. I am doing great today -so will you. The treatment is no walk in the park but it does pass.

Hello Tower,

Here's wishing you the best in your upcoming treatment. I really found that keeping a daily journal helped me a lot in getting rid of most of whatever emotions I was having on that particular day. Never sat down to just purposely type out the exact chronology of what happened that day, but more to express my feelings about both the treatments and EVERYTHING else that was going on, including some things I am glad that some others were not able to read.
Then there is this wonderful forum. Come here for whatever you need to talk about. As I am sure you have seen, you will find as much love and support as you could hope for, from people that KNOW what you are going thru.
Good Luck and will be praying for you,

Jack

..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides

Tower, glad to see you were able to get into Sylvester. They are a super group of medics. If you want to speak privately, please email me offsite and I'll arrange a time to visit with you. We can compare notes on the various doctors you have and the Winn-Dixie overnight facility. I stayed there one night once toward the end of my treatment. Make sure your wife attends the orientation, though, otherwise you may encounter some problems.

Well Done! You efforts and research have paid off. If I may say so, your choice of Miami instead of Toronto for the winter is superb. During the treatments, plead for samples of items first (to try) before they send you away with prescriptions only. That can save you a bundle in the long run. As you have already determined, if you have a question, someone here has an answer. Good Luck. You and your recovery are now in my prayers.

David

Tower,

I'm glad you were able to get the arrangements worked out in Miami. I know it's been a long process researching the alternatives, but it sounds as though you've connected with a good team. Although you start radiation this week, you probably still have some time to try to pack in some good substantial meals in the early stages of treatment before you begin to feel the unpleasant effects, so try to do that as much as possible. We'll be here to try our best to help you get through these next several months.

Cathy

Tower,

I am glad you have found a place you are comfortable with. The time will pass and soon you will be done. Please ask about anything you need during treatment. Many have traveled the road ahead of you and we are all here to cheer you on. Wishing you the very best!

Ed

Glad to hear your are getting information and moving forward. Your choise of Miami in the winter and IMRT is good. I had IMRT which as you know will leave you with some saliva glands which after a few months you hardly notice the loss of the others. The free stay will help you budget. My IMRT was $1000 a shot so the total bill withh Doc visits came in at $50K which hope yours is similar. That was the list price which I think my insurance paid half that so hopefully you can negotiate the same. Good luck and see if your family can visit you over the holdiays. They shouldn't complain coming to Florida in December.

Tower,
I am one of those who is in favor of a PEG tube, if needed. I would recommend doing what I did...starting treatment without a PEG, but monitoring your swallowing as the radiation begins to have effects, and if you can get your nutrition from swallowing, fine. But, if after a couple of weeks of radiation, you cannot swallow, then I hardily recommend getting a PEG. Once swallowing functions improve, you get it removed.

Best of luck,
Danny G.

Tower-
Have heard many pros and cons on this forum regarding the Peg tube. I was going to tough it out without but when the doc told me what it would be like to have it done after my throat was raw and swollen from radiation was glad it was done first. You don't have to use it until you need it. Just tape it to your belly and pretend it is not there! Just remember to work on opening your mouth as far as you can many time throughout the day during radiation. Pretend you are eating that subway sandwich or that burger!! If you continue to stretch your mouth open during treatment it will be much easier down the road when you can eat normally again. Do this while you practice swollowing water or something everyday. It is one of those things they forget to mention until months after treatment and you find your jaw is frozen. You are on my prayer list, hang in there! Love, Kris