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Stage 4 colon ca survival rates

lissalou
Posts: 3
Joined: Aug 2007

My husband was diagnosed with stage 4 colon cancer in May. He had a resection in 2001 and chemo w/ 5FU/Leucovorin. We thought everything was going to be okay when he reached his 5-year mark cancer free, but his CEA was elevated at the last check, so tests revealed the cancer popped back up in several spots in both lungs and a 7 cm tumor in the upper left lung.(Nothing in the colon, surprisingly) He is on FOLFOX w/ Avastin every other week. The doctor just puts him off when he asks about his prognosis, so the last time he just out and asked "Am I going to live", and all the doctor would say is "You're living now, aren't you?" All he is asking for is an approximate survival time with this protocol. Does anybody have any idea?

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Most survival rates are based on old data. In a way, his doctor is right, the best thing to do is to keep on living. You will surely hear from others on this board who were diagnosed Stage 4 and who are now NED and from others who have persisted keeping the disease at bay for quite sometime. Don't try to put an endpoint on life even though we all know at some point we will reach that. Enjoy each day. As has been said here before, as long as we breathe there is always hope.

Dick

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

This is one area I have a hard time keeping silent about. As far as prognosis, no doctor is that good. And if they can tell you your "expiration date" be sure to ask for some winning lottery numbers, too.

What would your husband do differently if he knew his prognosis? Don't wait for a doctor to tell you how to live. I echo Dick's advice: "Enjoy each day" ; "as long as we breathe there is hope." That is the best advice for anyone who has or hasn't been diagnosed with cancer or any other health condition.

If the doctor tells you ten years, and you live to nine years and 364 days, does that make your doctor wrong? Or in the other direction, he gives you ten years and you live twenty.

Personally, I don't believe anything good can come from a prognosis. Any of us can beat cancer only to have something else take away our lives. Don't hinge your living on an expiration date....as we all know, those are reserved for dairy products, not people.

LIVE!!!!!!!!!!!!!

Hugs,
Stacy

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

I totally echo Stacy's advice. I've never asked for a prognosis, don't want to have a prognosis. I want to enjoy each and every day and believe that I am going to prevail. Attitude is about half of this battle with cancer - if the doctor told me I would have XX # of months/years left, my attitude wouldn't be worth a hoot!

Live each day, enjoy each day and as Stacy said, even if you don't have cancer, it's good advice!!

Kerry

kbienapfl's picture
kbienapfl
Posts: 61
Joined: Sep 2006

I would have to agree with the other posts. Psychologically,I believe a set prognosis is very limiting.

For example, my oncologist never told me that I have incurable cancer. He explained that I have 'treatable' cancer. I went to Sloan-Kettering for a second opinion and was told I have incurable cancer and not to expect my life expectancy to be more than five years.

I felt Sloan gave me a death sentence. When I explained to my local oncologist the news that Sloan delivered he was quite disappointed.

From my personal experience, prior to my trip to Sloan, I felt what I had was beatable and my attitude carried with that. My level of fear has risen significantly since my five year prognosis.

Don't ask questions you really don't want answers to.

Live every day to its fullest.

lissalou
Posts: 3
Joined: Aug 2007

I understand your thoughts, but it is upsetting my husband, because he feels like nobody is telling him the truth and that the doctors are "keeping something from us" in his own words. He feels that he has a right to know what could potentially be happening to him, and to be just left hanging (as he puts it) is driving him crazy. He says that it's not fair that nobody is telling him what to expect and when to expect it. He feels that his doctor is just trying to give him false reassurances, even though I try to explain to him that everybody responds differently to treatment and what happens to one person doesn't necessarily happen to another. In the meantime, all he can do is keep on living in this moment and not let what might or might not happen in the future get him down. I just wish I could get him to understand that.

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi -

I am a Stage IV survivor. Stacy and Kerry pretty much say it all. One of many things I love about my oncologist is that she never gave me a "prognosis". And, I never asked. She was honest and sometimes blunt, but mostly she let me know this was a tough diagnosis but also let me know that the treatments today offer real chances of success and that we would fight this together and that her goal was to help me lead a good, long life. So far it has worked (26+ months since diagnosis and No Evidence of Disease).

I can't be more eloquent than Stacy or Kerry. But please ask yourself what good could possibly come from asking your husband's doctor to make a prediction. Almost nothing I think. He doesn't know the future. Stats have nothing to do with any one individual. Of course you have read all those terrible Internet stats, but most are dated. And most stats relating to the newer drugs come from clinical trials that by definition were initially done primarily with the sickest of patients. We are all individuals and we all respond differently. And there are many Stage IV folks who respond very well.

I know that in my own cancer journey I have had mixed feelings about the word "hope". In my more depressed moments, just the word "hope" sounds rather hopeless, like grasping at straws. So, rather than talking about hope I like to think about the effective treatments that are out there, the effective treatments that I have had and the FACT that this is a treatable disease.

Take care,
Betsy

survivorN
Posts: 1
Joined: Aug 2007

I am now 16 mos NED after 14 mos of chemo and bilateral lower lung resections for stage 4 metastatic rectal adenocarcinoma. I made a mistake of asking for my prognosis in November of 2004 and was told I could expect at best, 22 mos with chemo the entire time. I have never asked for a prognosis again. I refused to accept that death sentence then and still refuse to believe it today.

I don't know why some doctors feel it so important to stifle our hope. All we have at this point is hope. Don't let text book stats make you start believing you don't have a chance. Attitude is 90% of what happens to us. I have never stopped believing that I am a survivor and I intend to keep it that way.

I love all the other responses you received. They have been encouraging even to me. Just remember, there are a lot of people living WITH cancer; just as there are many people living with blood clots that can turn fatal at any moment; people with known heart disease with only a short matter of time left; the list goes on and on. Just keep believing you or you're husband are survivors.

Good luck and God bless,
Beth

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