"OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | 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!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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