August 5, 2009 at 11:45 am #30425kristinParticipant
I think there is a LOT that science doesn’t understand about this cancer. Different people have such different experiences with it.
My own case is not usual. I first got sick 6 years ago this month, was diagnosed and had surgery 5 1/2 years ago, had a recurrence and failed surgery 3 years ago. And here I am, still running 18 miles a week and enjoying every day, with the tumors still in me but not growing (no one knows why) and no medical treatment in 3 years.
Statistics only say what happens to most people– they don’t tell you what will happen to ONE person. I had no idea three years ago that my life would ever be this long and beautiful. The main thing is to get as much joy and love into every day as you can (and that goes for “healthy” people too!)
Wishing all the best to you and your sister–
KristinAugust 5, 2009 at 10:20 am #30424louiseParticipant
Remember, statistics are historical, not predictive. Also, those who have survived 5 years today had to have been diagnosed more than 5 years ago, and treatments, drugs, collection of knowledge, have changed considerably in that time. There are many people who have posted stories of being told they were inoperable but later had operations. There are also stories of prognoses becoming self-fulfilling prophecies. Does that mean that what we believe comes true? And if so, don’t you want to believe the very best for your sister? My brother-in-law is convinced that his mom fought cancer valiently until she lost hope. It may not have been the cancer itself, but the expectation that made her third battle her final one. And so far in this post, I haven’t mentioned the power of prayer. In my mom’s case, her oncologist believed that without surgery, radiation, or active chemo (she was on low-dose pills), she might last a year. With prayer as her primary weapon, she is still going nearly 3 years later, but she’s now in her final days.
I guess what Kris and I are both saying is that you don’t have to believe the stats or the worst. What the stats might really be saying is that there were a fortunate few who found it early, found good doctors, asked the right questions, found and chose good treatments, and never lost hope. Those who lost the fight include those who gave up, those who didn’t find or were not willing to try the “new”, the “experimental”, or whatever would work for them, or could not afford the recommended treatments. The stats do not tell you all the facts.
Keep looking forward and upward! The ride probably will still be bumpy but it could be a long and great journey.
LouiseAugust 5, 2009 at 7:03 am #30423devoncatParticipant
Try to stop thinking about statistics. As my bestfriend (an oncologist) pointed out, statistcs dont mean anything. Cancer treatment has come a long way and it takes years for these changes to show up in statistics. All 3 chemo drugs I was on, were developed in the last 10 years. They will not have had a chance to work there way into statistics yet.
That said,one of the main factors in how long you live is if you had a resection. That tends to give people more time and actually cure some.
I am at 2.5 years since dx. I had surgery, but it is back now. I have a grapefruit (but flat, not round) sized tumor in my stomach and a smaller one in my liver. I had a tumor on a lymph node but chemo destroyed it. I feel pretty good, and I cant imagine myself going anywhere anytime soon. I told several drs. that 2 more years wasnt good enough, I expected better so we all better hop to it.
The better advocate you are,the more informed, the more you question your doctor and push, in my opinion, the better chance you have at surviving. This is a rare cancer and many drs. are clueless and basing decisions on old theories and treatments. That is the wonderful thing about this board, the knowledge you gain here will help you fight the battle and possibly inform you of a different treatment that can benefit you. I cant tell you how many times I have taken information from here and questioned my doctor. In fact, I will be discussing 2 more different treatments next visit.
KrisAugust 5, 2009 at 3:43 am #2541heatherblessMember
I would like to know any studies that possibly show statistics of five year survival rates of CC. There seem to be a lot of people on this board that have survived past five years. Please chime in and let me know who you are– when you were diagnosed, etc. It gives me hope for my sister. best, heather
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