Remarks by Gary were taken completely out of context. As I have started to see things around here, we are getting more and more people asking for advise on decisions they have already made. There are a few of us, having been around for a long time, that tend to be a little strong in our posts. We post based on our personal experiences, direct knowledge of poor choices made by members passed. I for one, will no longer post to these types of threads. I have had ALL of the recurrences available and I'm a little tired of arguing my experiences against useless statistics and speculations. Maybe the appropriate individuals can make a note in their post, "speculative posts only, others please reply by PM". That should do it.

As for not missing the people you leave behind, My daughter asks me if I'll miss her when I die (I am dying). I tell here that I'll miss her as I die, but my life is about her missing me when I go. My entire purpose is to make every effort to create good memories for her, memories that will leave her with positive thought of our years together. My experiences and opinions, and in my opinion Gary's (Gary, only my opinion) are starting to be wasted on here. You will find all you need using the search feature. I never thought I would say this, I'm done with public postings here. Those that need it have my Cellular number, please use it.

Glenn

I have been following this board for the past several months, as I underwent 2 surgeries and radiation for adenoid cystic carcinoma of the parotid (major salivary gland) T2N0M0. I am 42 years old non-smoker, 3 children, and am very healthy otherwise. I have not seen much regarding ACC in particular, but have found most of the information applicable nonetheless. ACC is very rare, I have spent months researching and asking questions, but always appreciate learning something new.

The choice to radiate or not is indeed a difficult one, as I went through a similar decision to that of Luigi's. After visiting 2 CCC's and obtaining additional opinions from well respected RO's with experience dealing with adenoid cystic carcinoma, there was still question about whether or not radiation was absolutely necessary now or to save it in the event of a recurrence. I chose to do the radiation, in spite of all the horror stories that I heard. I beleive that I was one of the fortunate ones, and have not yet experienced serious side effects that had made me so apprehensive. Yes, I have a sore tongue and a dry sticky mouth, and I can't taste anything at the moment, but it has only been two days since I finished radiation, and I expect most normal functions to return. I am 105 pounds and only lost 2 pounds during the 6 weeks of radiation. I used the "magic mouthwash" for the last 2-3 weeks as needed, but have not even need pain meds, just a little help with sleeping. One thing that I have noticed, is that usually only the people with the worst experiences take the time to write about them, so I just want to let some of you know that it isn't always that bad. I have about the best prognosis that I can expect at this point. I guess the advice that always stuck in my mind the most was that at least if it does come back later, you will know that you did everything that you could.

I am curious how long it takes to get your taste back though. My favorite foods were ice cream and chocolate, about the only tastes I can pick up at this point are some vegetables (no salt or sweet tastes at all).

Mary T

Dear Mary T. Good for you for posting and for doing so well and since I'm a little bit of a "health nut", I've got to say that swapping icecream and chocolate for veggies you can taste, may not be all that bad Amy

Mary, I am so pleased you got through rad relatively unscathed. You are absolutely correct that we tend to see the worst case things posted here. About your taste, I found that sweet was the last to return, and it came in fits and starts -- one bite great, the next no taste. By 10 weeks post rad I had all my taste back, including chocolate! So start marking off the calendar.

Hi Gino

I know I'm a little late to this thread, but wanted to add a couple of hopefully encouraging thoughts. I had pretty much the same deal as you did, SCC tongue and mets to nodes, except I was more stage 3 something, my case it was prett clear that rad/chemo was in order and even then tops 60 percent chance of surviving..

Glossectomy, neck dissection, rad/chemo, first time around when they radiated my tongue was the worse, did wind up being fed by IV for a week (no PEG) and felt bad for a few weeks later, but the tongue healed up after a couple of weeks, didn't loose any teeth, the taste came back after a bit and even though had reduced saliva still managed.. Then had recurrance on opposite side, more rad/chemo, and thanks to IMRT that session wasn't as bad, probalby could have worked until about 3/4 the way through, but had to go out of town for treatments and was only home on weekends. 3 years out, have enough saliva to get through, still all the teeth, hopefully no cancer, and can eat Thai, Indian etc spicy food.

Not a lot of fun for about 5 weeks, but if done properly will help to be sure you're around a bunch more years.

Let us know what you decided.
Bob

Luigi,
I had oral cancer in lower left jaw in Oct 2000 (T3N1M0 ) and also had 15 lymphs removed during op, of which one was cancerous. I had to decide whether to have radiotherapy, as they had booked me in a specialist unit for 2 weeks to have the treatment. After talking to my surgeon about it, and others, I decided to say no to the radiotherapy, and have fortunately been OK ever since. Good luck.
AJ

When you get into a fight with a bully you've got to hit him with everything you have. My RO and ENT explained all of the possible side effects and were very real in their assesments of how I would feel during and after the radiation. I know everyone is diferent, but I chose to have the radiation. Hit back and hit hard. Whatever your decision, good luck.

John