The Colon Club

I know others have written to say their doctors have said that their is no cure for Stage IV colon cancer.

My doctors have stated that as far as they are concerned I am cured, and I haven't reached the 5 year mark yet. But they believe that Stage IV's can be cured.

So, I'm curious, how many Stage IV's are on this board who have been cured and for how long?

I was dx'd on July 22'nd of '04 and have had no evidence of disease since September 14 of '04 (I'm almost at my 4 year anniversary) I've been off of chemo and everything else since June of '05.

I've seen a few other long term survivors of this, I just wanted to get you all in one subject.

On another forum i visit there is a stage IV person who has been NED 10 years now, so I am assuming considered cured as well.

Cured? Well for me me, my doctor at Moffit in Tampa said he sees " no active disease"...but I was diagnosed in November 2007, and he said that in April 08 and again in June 08. I went to him after 7 rounds of chemo expecting he'd do surgery on my liver to remove 2, possibly 3 mets. He said that although my CT showed 2 lesions, my PET came back negative and he believed the chemo had killed them. (A biopsy of one of the lesions came back positive for colon cancer prior to chemo.) Next is a PET on Sept 29th... I've only had 7 rounds of chemo total and the colon resection... if I'm cured then I really think I have gotten off easy!!

GOOD QUESTION AND A QUESTION I WAS PAINFULY SEARCHING FOR AT TIME OF DIOGNOSIS,,,I AM A STAGE 4 PATIENT DIOG 4/06 AND HAVE DONE EXTENSIVE RESEARCH EVER SINCE.
I CAN TELL YOU I HAVE SPOKEN TO THE HEADS OF ONCOLOGY AT A FEW BIG HOSPITALS WHO HAVE 30+ YEARS EXPERIENCE WHO TOLD ME STAGE 4 IS INCURABLE,I HAVE SPOKEN TO MANY DOCTORS WHO SAID THE SAME. I HAVE SEEN THE CHAIRMAN OF ONCOLOGY AT THE TOP CANCER CENTERS AND I HAVE BEEN GOING FOR TREATMENT AT SLOAN KETTERING.
THE ANSWER IS YES! THERE ARE PEOPLE CURED OF STAGE 4 AND EVEN THE RARER DIOGNOSIS I HAVE OF STAGE 4 WITH PERITONEAL SPREAD WHICH IS CONSIDERED A MUCH WORSE PROGNOSIS THAN OTHER STAGE 4S. IN MY CASE I WAS TOLD 3-6 MONTHS BY READING THE INTERNET,18-24 MONTHS BY MY DOCTOR FOR AVERAGE SURVIVAL AND 1% OR LESS FOR CURE.THIS IS FROM A WELL RESPECTED DOC AT SLOAN. WELL IT SEEMS THE BEST CHANCE FOR CURE IS THE ABILITY TO HAVE RESECTABLE TUMORS,FEW AS POSSIBLE AND SHRINK THEM WITH CHEMO PRIOR TO AND SOMETIMES AFTER SURGERY.IT IS RARE ENOUGH TO GET CURED WITH REMOVABLE TUMORS AND SURGERY AND I AM TOLD VERTUALY UNCURABLE FROM CHEMO ALONE ,,,ALTHOUGH I DID READ OF A FEW WHO HAVE BEEN,,,BELIEVE IT OR NOT WE HAVE A BETTER IDEA OF SURVIVAL AND CURE OF COLON CANCER THAN MANY LONG PRACTICING DOCTORS BECAUSE WE CAN SCAN THE NET AND FIND THE STORIES THEY HAVENT HEARD.SO IF THEY HAVE ONLY HAD A FEW PATIENTS LONG TERM OR CURED,,,TIMES THAT BY THE 100+ PLACES TREATING THE DESEASE AND YOU GET A BETTER PICTURE.
AS FOR MYSELF,,I WAS IN A REAL BAD PLACE STAGE 4 PERITONEAL SPREAD,ON LIVER OMENTUM SMALL INTESTINE LARGE INTERTINE ECT. SURGERY,,,6 MONTHS CHEMO,,,SURGERY,,,,8 MONTHS CHEMO,,,,SURGERY AND NOW 2.5 YEARS LATER NO SIGNS OF CANCER ON SCAN OR SEEN DURING SURGERY TO REMOVE 1 LEFTOVER TUMOR.DOC AT SLOAN THINKS I BEAT IT DUE TO THE TIME FACTOR AND NO NEW TUMORS. AFTER WHAT I HAVE BEEN THROUGH I WILL ONLY BELIEVE IT YEARS FROM NOW.
ANYWAY TO ANSWER THE QUESTION ,THERE ARE REAL PEOPLE WHO DO BEAT STAGE 4 MOSTLY BY RESECTION AND SURGERY ,WE ALL HOPE TO BE THAT EXCEPTION OR STAY AROUND LONG ENOUGH FOR A CURE.

cptmac wrote:cptmac said:
I know others have written to say their doctors have said that their is no cure for Stage IV colon cancer.

My doctors have stated that as far as they are concerned I am cured, and I haven't reached the 5 year mark yet. But they believe that Stage IV's can be cured.

I am certainly not cured at this point, but I just wanted to add something about this. My new oncologist at U of Michigan Comprehensive Cancer Center stated last week that in his experience patients that are cured with stage IV cc are "stubborn, determined and basically scare the disease right out". My husband then added that I was the perfect candidate for a full cure! (His comment was completely inappropriate, don't you think?)

Kimby

Some stories for you:

http://www.colonclub.com/2009November.html
http://www.colonclub.com/2009September.html

It is an amazing two stories that the the colon club has choosen for the 2009 colondar. I read each story and found them very inspiring.

I have e-mailed Todd on several occassions and now know what he looks like and how he carried on with his life. Todd you are a real role model.

The other story is just as amazing . I have not had any contact but the story and the battle with the disease at such a young age is a hard battle that appears to be won.

Two great stories.

Hi all -

I don't think I can legally use the "cured" word and I am pretty sure my oncologist would agree. But, I am on my way, I think. Diagnosed Stage IV in late May 2005 (liver met), NED since October 2005, off chemo since mid-December 2005. Colon surgery, but no liver surgery. (I am "the medical oncologist's dream and the surgical oncologist's nightmare" - didn't make that up, I read it somewhere .

ButI am almost 3 years NED and 3 years. 3 months post surgery.

Betsy

When I was diagnosed, the person who recommended this site to me was/is a Stage IV survivor. She has been cancer free for over 5 years now. I've chatted with and heard of plenty of Stage IV folks who have been cancer free for a good while. I'd just like to point out that for many people who have beat cancer and have gone back to work and the routines of their daily lives, in many cases they drop off a list like this as they become re-involved with work and family.

Joanna

Betsydoglover you are an inspiration to all on this site. I know you have inspired me several times when I began the journey. I wonder how often you are checked or followed up at this point in time. I like to read about people who have beaten the beast on carried on with life.

Hi,
I hope everyone who is ned and stage 4 writes in. I am going on my 3 yr annv of remission . I have my scans later this month. This is the first time i have gone 5 months. I had 8 tumors in liver and 3 cut and 5 rfa at the same time.

My last scan should 7 stable no growth. I of course freaked because there should just be 5 but no ones worried looking back on scans they have been there 2 yrs or more. Of course I worry since only 5 were rfa. So Im nervous and Im losing alot of the people I started out with to this tragic disease.

I maybe cured but I guess uncomfortable with the label and feel bad for everyone else not so fortunate as myself. But write in I feel like Im in need of a stage 4 reunion group. I love offering support and have been doing alot with new stage 4 but I need to recharge my batteries with other people in remisson along time who are stage 4 its lonely here at times..
Anita April 2007 Colondar

Hi, Anita--it's been more than three years since Suzanne hooked us up as CCA buddies in 2005. I was full of questions about HAI pumps and liver resections, and way short of people who'd experienced either. Thanks, by the way, for your help back then. I wasn't going to contribute to this thread--but after your post, I decided to speak up. A lot has happened to me, too, since we first spoke--and like you, I've also lost a lot of people who I started out with.

Call it 'survivor's guilt' if you like--but I am also *very* uncomfortable with the label 'cured'.
When there are lesions visible on scans (even if they're stable), that's remission.
When (although I have no evidence of disease) I still can't give blood and no organ in my body can be donated to anyone but an oncologist for research, then that's NED.
However, as I understand the word, neither of those situations qualifies as 'cured,' since in both classifications, cancer can *always* come back...and in fact is far more likely to come back than to remain at bay.

'Cure' is used as both a noun and a verb.
As a noun, Etymology: Middle English, from Anglo-French, from Medieval Latin & Latin; Medieval Latin cura, cure of souls, from Latin, care.
Date: 14th century
2 a: recovery or relief from a disease
b: something (as a drug or treatment) that cures a disease
c: a course or period of treatment <take the cure for alcoholism>
d: spa 13: a complete or permanent solution or remedy <seeking a cure for unemployment>

As a transitive verb:
1 a: to restore to health, soundness, or normality <cure a patient of his illness>
b: to bring about recovery from <cure a disease>
2 a: to deal with in a way that eliminates or rectifies <his small size, which time would cure for him — William Faulkner>
b: to free from something objectionable or harmful <trying to cure him of a bad habit>

Those uses of 'cure' paint a picture of complete and permanent solutions/remedies, elimination of illness, recovery from a disease, and--my personal favorite--'restoration of health, soundness and normality.'

So, maybe I'm being too literal, but it seems to me that a 'cure' by definition should be a complete and permanent recovery--a situation where the cancer never recurs, never comes back. Is 'never' as long as 'always'? Is 'never' a very long time...or just as long as some doctors/surgeons have time to observe? In any case, when did three-four-five years begin to equal 'a very long time'?

As people with Stage IV dx's, if we are very lucky in our treatment responses, we spend time without evidence of disease (NED); we may also spend some amount of time without progression (remission). But are we cured ... in other words, has the cancer permanently been resolved?

Come ask me that question in ten years...and to borrow a quote from Randy Pausch...'give me that opportunity.' But right now, in or out of active treatment, in remission and/or NED are the labels that make more sense to me.
YMMV.

I don't think I would ever use the word "cured" gaelen either - seems like tempting fate.

clearly there are people who the cancer is non-threating phase for what appears indefintitely long periods of time - some 5 or 10 years or longer. But the percentage isn't as large was we woudl like it to be.

but, it's one of those hope for the best, prepare for the worse, but don't worry about it right now to the extent that it prevents your form living NOW.

I just had this discussion with my Onc. I told him no matter what he tells me I will never feel cured. I will never emotionally shed myself from this disease. So periods of NED will be what I am hoping for, maybe we can manage this as a chronic illness for the next 10 years. By then who knows what the next great treatment will be. So for now I don't get to wrapped up in the symantics. I have a scan scheduled for friday, and I am hoping for no progression. With no progression I can go for some focused radiation on the small lung lesions I have developed.
My Oncologist relayed a story to me about a Stage 4 patient of his, with who it took 5 years of cutting, chemo, and radiation to become disease free. The patient has been NED for 4 years now, can he say he is cured, maybe, maybe not. But he has lived 9 years post diagnosis, with no end in sight. So I guess what my Onc wanted me to see is don't get to emotionally tied to the word cured, and go live my life. That is easier said than done, but I got the point.
Another personal story relayed from my nurse that unhooks my pump. At the time of my diagnosis, another gentleman in my neighborhood was also diagnosed stage 4, with liver mets. After 12 rounds of FOLFOX w/Avastin, his liver mets were biopsied and determined to be dead, so they canceled his liver resection, and all is well today. Cured ? who knows, but with frequent monitoring, his long term prognosis looks very good. So I don't have to look to far to find stories of survival from stage 4 patients. I hope to be another one.

Jim

Cured ? I am hopeful that I am cured. Hoping i stay Ned. I take it one PET scan at a time.