John - It is SO important what Christine said! My son's doctor was known for being very aggressive in treating cancer. My son had radiation and altho' it got pretty rough for a while, I am so glad he did! He's been cancer-free for over 5 years now and doing just great in every area of his life. Please do consider carefully what your oncologist recommends for you. There are so many knowledgeable and helpful people here at OCF to help you every single step of the way.

Hi John... I agree with both ladies. For a few reasons - firstly - you're so young and to have no precursors for this - I would want to make sure you nip it in the bud now - we've had a few young people come through here and sometimes it can be very aggressive in them. The upside is because you are so young you'll likely heal faster and be better able to handle the side effects. Secondly I'm of the theory that you should treat this type of cancer very aggressively - you may only get one shot at getting in front of it so throw the book at it while you can. You've done the primary treatment already - surgery removed everything visible - but on a microscopic level no one knows. That what rads and chemo does. It should take care of anything microscopic (stray cells) that may be lurking - rads will likely focus on your tongue and they'll paint the nodes - chemo - they will give you if they feel there's even the slightest chance there could be systemic involvement - also it weaken any cells giving rads a better chance at working (your lymph system is very similar to your veins and arteries and runs everywhere - despite the fact that you may have no tumorous nodes - that doesn't mean that there isnt a stray cell or two elsewhere - which chemo could also get.

My dr. told me - after removing 40 nodes (he's the top guy at one of the top 5 cancer centers in the word - and the top one in Canada) that in his opinion I was cured - and he was on the fence about giving me rads and chemo - but I did have neural involvement in my tongue, and ECE of my node (a little had leaked out) he was certain he'd gotten it all (he does a special surgical technique where he can actually see the cancer in real time while he's cutting - rather than working off an old CT) but just to be on the safe side he wanted me to do the extra - also he knew I wanted his treated aggressively. So I agreed, because I wanted to know that I'd done everything i could to prevent a possible recurrence - up front.

My rads guy said the same thng. He also said that radiation cuts the odds of recurrence in half.

Radiation is no picnic... It's hard - and brutal for some but the bottom line is its 8 -9 weeks of crap - (usually treatments are 30-35 with possible chemo (3 full doses - or 6-7 half doses depending on your hospital and dr. ) the first three weeks aren't generally too bad -then the rest gets progressively worse - the two weeks following your treatment are generally the worst! But then slowly you begin feeling better.

So a possible two months of your life to trade for better odds that you will have a "rest of your life" - there are of course no guarantees - everyone is different - everyone handles things differently - some breeze through - (i did 33 rads+ chemos - and was able to drink my nutrition throughout - and drive myself to my treatments daily - im 13 mos out of sugery 10 mos out of rads - and function at about 90 -95 % ) - and some really struggle. I think most fall in the middle. It's a tough choice - talk to your dr. find out why he's recommending it then go from there. There are lots of things available during treatment to help - pain meds, creams, antinauseants - an after there's physio, acupuncture, massage etc...

You'll get though it - its not easy - but doable.

Good luck! And hugs!

John,

I'm 17months out of radiation and i can tell you its DEFINITELY worth it!! Yes my life has changed but it is still a life worth living. I just turned 37 in January and i can tell you that my life is just as good as before radiation if not better! You hear about all the negatives and they tend to stay with you and make you scared but i've been through it, survived and is now living life to the fullest knowing that i did everything possible to kick cancer's ass!

I also just had a big piece of fillet steak for dinner tonight, while it didnt taste as good as before - i still enjoyed it!!

i hope my input helps with your decision.

Christine is right. You could get through the radiation and be back to life in a few months. Kevin went back to work the 5th of January. I never thought it would be that gast, but it was. He has a few side effects, but we are getting back to some normalcy.
If you don't do it, and chemo if they recommend it, there's probably a good chance you will battle this again. Look at it this way. If they have to cut more of your tongue out, that won't be good either.
You can do this. The benefits way out weigh the risks!! Go for it. We are here when you need to talk!! We've all been through it or cared for a loved one who went through it. We truly do know your thoughts and fears right now. But we are on the other side saying "jump in and wade through it!"

I think you're getting great advice here. Radiation is tough but dying in your twenties is a hell of a lot worse. I know it's a scary prospect but, as others said above, it's not the end of the world. I finished radiation six months ago and I am feeling really good at this point. Please talk to your doctors in depth to get a clear idea of why they are recommending radiation and maybe read through some of the stories on this forum to better understand what it will be like. If you still aren't sure, get a second opinion so you can be confident in whatever you decide.

John - DO IT!

John, I just want to add to what others are saying. If you have the radiation you will get through it. It's no picnic, but it is manageable. Talk with your doctor and if he thinks you should do it go ahead. I completed my treatments in August of 2009, went back to work part time in October, full time in November. I also had chemo. As Tracy said, it is tough, but dying in your twenties is tougher. You don't want to regret not throwing everything you can at this awful disease!

Thank you all. I will be going thru radiation you all helped me get their this. I don't know if in the coming months I'll be able to come on here as often so if you'd like to send a letter please PM me for my address. You have all helped me so much. I'd love a pen pal. Thanks.

Hi John:
Well, I see you do have to have radiation after all since we first corresponded, but like all these other wonderful members have agreed, better safe than sorry. You will do great! You're young, and will get through it just fine. Keep in touch with us, and prayers heading your way for a speedy recovery.
julieann

Keep up your nutrition and hydration while going thru treatments. It will make a huge difference on how easily you get thru this. Your age will help you get thru it easier than someone older.

John here is some info that can help you if you are struggling during your treatments. Its a list of places that offer help to cancer patients. Its from the main OCF pages.

Best wishes!

Financial Assistance for cancer patients