Hi Aimeeb,

I, like you, have not been through what most of the folks here have been through, so it seems that my part of the 'story' has already been told. I do come back to the board and check on people, does that make me a lurker? I don't know I am always logged in and anyone can see that I'm on this site but I believe that the lurkers are welcome too (I think some of my family are here as guests) I don't say much since there are so many others that have such good information. I wanted to reply to you to let you know you are definitely not alone and there are many others here whose situations are close to yours, it took me around 5 months to figure that out.
Keep the faith, and try to push the fear to the back of your mind, there is so much more to do than worry! I hurry about my life and try to keep busy, that helps to keep the fear in the background, having said that, I think the fear will allways be with me so I choose to not let it be in charge.
For someone without much to say I have said quite a bit And you will be another person on this site that I come back and check on!
God Bless,
Sharon

OH! If you check around on the odds of recurrence like I did months ago you will find a lot of different answers! If you feel like you have to, go ahead, and you will likely reach the conclusion I have come to, there is a lot of information, a lot of opinions, and bottom line, no one knows for sure!
Peace and Hugs
Sharon

Hi Sharon and welcome back!

You are only a "lurker" if you are not registered. They only show up as X "number of guests", in the "logged in" section.

I have chosen to not show up in the logged in section in my preferences.

Thank you all for your responses and some thought provoking comments. I'm a worrier by nature and so it is hard for me to let go. I see this is what I need to do, so I hope with time, I'll be able to do so.

I don't think anyone expects to get cancer, but this was really out of the blue for me. I'm one of the younger patients that there are more and more of. I'm 31 and have never drank nor used tobacco, so the diagnosis really surprised me. I was very fortunate that the tumor had caused an ulcer in my mouth that hurt so that even the General Practitioner, ENT, and Dentist who dismissed my case didn't stop me and I found the Oral Surgeon who probably saved my life. But if it happened once, who's to say it won't happen again. Hence, my worry.

So I guess I just breathe and keep going. This board has been such a great source of information and support. Thank you all again.

--Aimee

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SCC of tongue, T2N0M0
Partial glossectomy, modified right side neck dissection 2/06

Hello all,
I am one of those who worry, however, I do not want to sound nieve but I must convince myself. I know the seriousness of this illness and the reality of stats for this cancer and others but plain and simple not everyone dies from cancer and I am convinced that I am one who will survive, I have had this attitude since day one. That does not mean that I have not been scared and had my doubts, cried my self to sleep, shit my pants (figure of speech)and woe is me. I have experienced all of those things but in the end I will be one who wins, I believe that I have no ther choice than to think that way. I just hope that I am right. As far as I and my doctors know I do not have Cancer today and that is good enough for me.
lenny

This discussion touches me too. I am 3.5 years out from Dx and feeling great. I don't think about dying, but I am aware that it is on my mind. I won't buy any new clothes. I just keep patching up my old pickup truck to drive. I realize that I don't want to "waste" money on new things for me - it implies I won't be around to wear them out. My wife and I were grocery shopping the other day. We needed vanilla ice cream (the only thing I can swallow) and I told her to find something cheap. (Don't waste the good stuff on me???) It was weird. I don't feel like a martyr or anything, just being practical.

I've already lived much longer than they thought I would - even than I thought I would. I'm delighted. I guess my 'new normal' doesn't have much advanced planning in it, or any entitlement either. Odd.

I delight in my family and interacting with my grown kids and new grandkids. I love spending time with my wife. I have a couple of part time jobs - teaching and acedemic advising at the college. My dog goes with me when I go fishing. Life is good.

I don't want to die of cancer - or anything else I guess. Like most of you, today is my day. There is so little I can do about tomorrow's health, tomorrow's diagnosis, tomorrow's pain. What I can tell you is: I don't have cancer today. That makes me smile.

Be strong, Tom (And go to the Getting Through It project and help me with this dang book!!)

Amy, for what it's worth I heard a lot of diferent stats about Stage II. My ENT originally said 75-80% chance of a cure. When I went for a second opinion at Dana Farber they told me that without radiation I had a 30% chance of recurrence (Like you, I had clean nodes and clean margins but my tunmor did show signs of perineural invasion and I'm not sure if that influences the odds they gave me) but they told me with radiation and chemo I had an 80-85% chance of cure.

Like you, the numbers are ones I want to know. I'm used to thinking in terms of statistics. But, ultimately, I can't know what's in my future no matter what. Although I have been given better odds than others in here, to me even an 80% chance of cure is scary--worse odds than Russian roulette and, in my case, having already used my magic radiation bullet, a recurrence would be worse news than in your case where you could still zap it with radiation.

When I think about this at all it terrifies me (and on top of that I have to add in odds of a breast cancer recurrence). Often I cope by denial that it could possibly come back to get me. Sometimes that doesn't work and I just sit with the fear. When I think about it, I try to use it to focus my current life on what I value and love. TAnd enjoy the moment. There's really not much else any of us can do.

Nelie

Statistics can be source of discouragement and/or confusion. I've hesitated posting what my ENT told me because I don't want to discourage anyone unnecessarily.

I'm with Mark on this - don't really want to ask 'cause the answer might scare me too much. Even though I never asked directly about the chance of recurrence, my doc offered some probabilities.

In case this might be helpful, he told me that if 250 people had the diagnosis that I had (T1 with positive margins treated with surgery and 35 radiation treatments), 100 would have a recurrence. Of that 100, 70 would have it in the first year, 20 in the second and the remaining 10 spread over the next 3 years.

That was for me. Does it apply to anyone else? Don't know. - Sheldon

wow. He's saying a 40% chance of recurrence overall even with radiation. That's definitely higher than anything I was told. But it is all really SO variable and depends on what data he is using and who really knows what assumptions he was making to extrapolate those numbers. These wildly different numbers we have all gotten are a good illustration of the limits on how useful these statistics can possibly be.

Nelie

Aimeeb


Forget odds, I was stage 4. I'm just this month 5 years out.