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Jane, We start round 6 of chemo tomorrow. Muscles are the 1st thing to go and with each treatment the fatigue and weakness get worse. I am not looking forward to these treatments this week. He has still not bounced back from round 5 3 weeks ago. Chemo kills all the bad cells and destroys a lot of good ones.
My situation is quite a bit different from yours, but I had to make a decision, too. Although my surgeon was convinced that my cancer (adenocarcinoma, caught by screening) was Stage 1a, the pathologist concluded it was stage 1b, based on his belief that the tumor had invaded the pleura. After a whole big debate at the the tumor board, the pathologist "won," so it was staged 1b. Interestingly, my stage is apparently about the only one without a clear-cut recommendation for further treatment. Chemo is never recommended for 1a, since it's actually been shown to result in worse outcomes than surveillance alone, and with stage 2 or greater there is always a recommendation for either chemo or radiation. But for my stage, ehhhh, nobody really knows what's best. My oncologist laid out all the options, and given the relatively small likelihood chemo would increase my chances of survival or avoiding a recurrence, I chose to pass on the chemo. I'm pretty comfortable with that decision, but there's really no way to know for sure whether I would have been better off with the chemo. But I'm pretty sure that if there were a strong, clear-cut indication that the chemo would be of positive benefit in terms of survival or avoiding a recurrence, I probably would have gone for it.
I get your point (as I think we all do) that when faced with a highly aggressive cancer then there is sometimes a point at which quality of life takes precedence over extension of life. But right now it doesn't sound to me like you have enough information to conclude it's only going to be "misery before death." Remember, you can always stop later if that's what seems appropriate. But if you make the decision not to pursue treatment too soon you might really be shortchanging yourself and your chances for many, many healthy years to come.
It is, indeed, a very personal decision, but that's how I tend to think about it.