Surviving Stage 4

scouty said:

I totally disagree with Cheryl
about stage IV colorectal cancer being incurable. I celebrated my 5th year of being NED (no evidence of disease) last year and was deemed cancer free from my oncologist and all the insurance actuaries. I have been "dismissed" by my oncologist and my docs are deciding on whether I get blood work and colonoscopies every 2 or 3 years. FWIW, I was diagnosed Jan. 2004' with my last chemo treatment later that year.

There are others here that have gone years with no cancer in their bodies, Stacy is at either 8 or 9 years, Foxy was at 16 the last I heard from her, JAMS is at 4 and all were stage IV. I'm sure there are others but so many want to move on in their lives and sometimes people just need a break.

Now I will admit there aren't as many as I'd like but there are some and stage IV colorectal cancer does not have a 100% mortality rate like Cheryl makes it sound.

There are also some here that have been living with cancer and will be on chemo for life like Phil and Cheryl and they too seem to be doing well.

Lisa P.

Hey Lisa!
I think you may have misunderstood my post in the other thread. What had me concerned was how it came across (and maybe it was me misunderstanding what Bobby had said) but that he had been diagnosed as Stage IV, that the original colon cancer had spread to his liver (hence the staging), that he did have the applicable surgeries and was on the protocol of chemo after the surgery, and is still on the chemo until next month, but here his oncologist is saying he's cancer-free and does not need CEA testing or scans. THAT concerned me that an oncologist would be so free with telling a patient that he is cancer-free when he hasn't even finished his treatment yet and he has had no follow up scans/CEA counts to back up this claim.

Each stage is just a different level of where one's cancer is functioning.... and yes, it is quite possible that you will have two people as Stage III or two people as Stage IV, all will be given the same description of what their staging means, yet you could have one person do extremely well, and the other person's cancer be resistant to the treatments. So, in that sense, staging doesn't mean a damn thing.

You are doing extremely well... better than extremely well. But even you have to admit, that out of all the Stage IVs out there, you are in that oh-so-small percentage who defy all odds and statistics and you can live to say, "See?? It DOES happen!" And yes, because it does happen, that gives everyone else who is any stage, reason to hope that they will have the exact same outcome.

Part of the big support folk get from this board is that there are those who defy the "stereotypes", that they do not fall into the "statistics", that the medical community/specialists/oncologists will say "This is the pattern of how this particular cancer goes" and there will be those who say, "Oh ya? Well just watch me, I don't follow no pattern thank you very much!" and they don't. I'm in awe of when that happens... and I love hearing that more and more people, whether it's because there is so much more that can be offered than what was 15 years ago, or whether it's the luck of the draw and a certain percentage are always going to do well, no matter how bad their cancer was. I truly hope one day I can say I'm in that small percentage.... and even better, if we can prove that that small percentage is not so small anymore.

BUT, one also has to look at the reality of this nasty disease... and it is very complex. The doctors/specialists don't have all the answers and a lot of time they are juggling and trying things just as we are ourselves. Sometimes, for some people they work and for others it doesn't do a damn bit of good. Who gets picked for which percentage you fall in? I don't think there's an answer to that. Someone, in the other topic explained about those whose cancer cells have mutated vs. those who stayed the same and were successfully treated by a particular chemo. That was super interesting and made so much sense... and explained to me why two people with the same cancer, same staging, same everything, can react in two totally different ways to the same chemo. One of them may go on for years, whereas the other one who did the exact same treatment protocol isn't as lucky.

Until the medical field changes either the definitions of Staging, or changes their statistics for each stage... as they are now, Stage IV is still considered incurable. Now what is your definition of "incurable"? The most accepted definition would be that there is no cure. It can be treatable, but there is no cure... and the reason for that explanation is that once the cancer has spread to other organs, it becomes systemic. Now you have tiny cancer cells roaming all around your system. Some will die off because they can't support themselves... others will find a place to set up camp, take root and live happily destroying healthy cells around them as they support themselves and grow... until they become big enough that our technology can detect them. And away we go with treating these mets. They can be treated, but treatment does not mean a cure. We have no idea when the next cells will take root... and for those who are in the lucky percentage, maybe they won't take root, or if they do, through whatever reason (immune system? diet? exercise? combination of all of that?) they are naturally killed off before they become big enough for our technology finds them. So that brings up another definition of "incurable". Science/Medicine has not found a way to cure cancer once it has reached Stage 4. Medicine has come a long way as far as treating Stage IV cancer, but you will find researchers/oncologists/specialists/etc. will not come out and say that Stage IV cancer can be cured. YET, there are the Lisa's of the world where, for all intents and purposes, have been cured. IN-CURE-ABLE. Able to be cured from within. It's not necessarily medicine that has cured you, but call it the stars were all aligned, some magical universal force was at work with you, a belief system, whatever... you have been cured and it wasn't because of something modern medicine did for you.

Can you explain why you are cured, and there are a fair amount of long term Stage IV's out there who are not in treatment so are technically cured... yet medicine can't explain it as they don't have a cure for advanced colon cancer. So, in the medical world, there is no cure for advanced (Stage IV) colon cancer (hence it is incurable)... yet there are many, many Stage IV folk, such as yourself who have been cured (hence IN-CURE-ABLE, able to be cured from within). Gee, if you folk KNEW exactly how you were cured from within... and could actually pinpoint what steps/what you did that actually created the cure, you could be one very rich lady. Was diet really the cure? How do we prove that? No matter what you say you think it was... how does one prove it? The only thing we do know is look at how well you are doing... and medical science can't explain why you are doing so well... but it's fantastic that you and the others are!

I still think Bobby's oncologist was wrong in telling him he's cancer-free when he hasn't finished his first round of chemo... and to tell him he doesn't need a CEA reading because he is sure that there is no cancer there. That just doesn't make sense to me... but I'm willing to give the onc a little slack because I wasn't there in the room and didn't hear exactly what he said. We all know that what is said and what we hear can be two totally different things... and even knowing that, I still have to have my onc repeat everything to make sure it sinks in.

Hahaha Lisa... look at that! You brought me out of the woodwork and I'm back in full babble mode

Cheryl