Long term survival

[mymom]

Hi all. I am new to this Forum. My mother was diagnosed with Colon cancer in May of this year. It is Stage IV due to the fact that they found a spot (one) on her liver. She has had the tumor in her colon removed and the liver ressected. They got all of it they believe. Now she is doing 6 months of chemo. I heard different percentages of reoccurance which I am not going to worry about until (and if) it happens. But I would love to hear of some long term survival stories (beyond 5 years). I do know of someone that is 8 years out but would like to know if there are more and if so, what treatment did you have?

thanks so much

[Ashlee H.]

My liver surgeon was involved in a 10 year study about liver resections/Stage IV CC. They found there is an 80% chance of a recurrence somewhere in the body within a year. I had a recurrence at 9 months. But then you have people on the board here, who are in the 20%, like Bev G., who is getting close to a 2 years mark since her liver resection.

[Monique]

Hello, welcome to the forum, though I'm very sorry to hear about your Mum.

I have a friend who was diagnosed with colon cancer a month after I was. He was classified as stage IV as he had metastasis to his liver. As with your mother, his liver was operated on. Due to a bad reaction he was only able to endure about three months of chemo. That said, five and a half later he is still NED.

Further, I posted the following links about five years ago:

Writers Donald Hall and Alan Bennett beat stage IV colon cancer. Alan Bennett writes about his ordeal in his latest book.

http://waywiser-press.com/imprints/hall.html

http://www.independent.co.uk/arts-enter ... 08326.html

Warm wishes,
Monique

[SkiFletch]

Welcome to the board nobody wants to have to join. A stage IV diagnosis is a serios matter to be sure, we all know that the odds are against us. You can't sugarcoat it and say that it's easy to beat, because it's not, BUT there are plenty of folks who have lived long lives with a stage IV diagnosis. Our own Todd Colitti is 10+ years out of the same diagnosis your mother just had (single liver met). My own grandmother was diagnosed with stage IV colon cancer when she was just over 40 and given 6 months to live following resection. She passed away 2 years ago at the age of 86 having never had a recurrance in over 40 years. Finding real long-term stories like this is difficult because folks that do make it tend to go on living their lives and forgetting about cancer entirely. It's a long road to that point, but it can be reached.

Also remember that not all stage IV diagnoses are the same, in fact a stage IV dx is by it's very nature more unique and individual than any other stage since the cancer has had extra time to mutate into it's own special entity. No two cases are alike, and there's no reason at this point to know your mother's disease will be treated successfuly or not. There are two sub-groups to stage IV; IVa and IVb. IVa's have mets localized to one organ/system, while IVb's have it in multiple organs/systems. Folks with rescectable IVa diagnoses have by far the better odds than those with IVb.

Regardless, we're all looking forward to sharing with you and helping you along this journey.

[BrownBagger]

Yes, it's an obstacle course, but as Fletch points out, every case is unique, so nobody can really say what "chance" someone has with a specific diagnosis. You just don't know.

I asked my oncologist, after my most recent recurrence, if he thought I had a chance of ever beating it. He listed off a bunch of "ifs" followed by a "then you might get lucky and...." My new onc, who is a bit of a big shot, seems a bit more optimistic about my longterm chances of eventually becoming cancer free. So, who knows? I sure as hell don't.

Another thing my first oncologist said, which I think are words to live by, was: "If you spend the rest of your life worrying about cancer, you will have wasted the rest of your life." That's been a pretty strong motivator for me.

[jobasar]

I'm a stage 4 survivor and I had my colon ruptured almost 3 yrs. next month while on vacation. It took them 3 month to find out that I had cancer and let alone that I ruptured. With all of that I wasn't septic and just one met to liver which they did resect for one was April 2009 and following year March 2010 had 20 percent of my liver removed. I am doing well. I am in the lung gang but recently they are calling the lung nodules granuloma which is a benign cysts of some sort. I know I had one lymph node in neck light up but I know things may come and go. So we all are getting screened more than other people around us so we can beat this disease. At least we can live for years to come. I work a full time job as a health aide, mom to a 11 and 12 yr. old kids, a wife, and I work out daily with friends and keep busy. I know I am not a 5 yr mark but I know for a fact that I had cancer for years before I had ruptured so I may have been surviving this longer that we think. I know I had IBS problems for years in my early 20s and I ruptured when I was 38 yrs. old. I am now 41 almost 42 next month.

I know of someone else here in town who had cancer but not sure what stage but the chemo he did was only a few session because of allergies to it. He is still alive. I know my husbands grandfather had colon cancer not sure what stage but he lived for years with his ostomy and he didn't die of cancer. It was something else. I hope you are getting more inspired by others on this board. I know it is scary but it is one day at a time and appreciate every day. We can go out and get hit by a car today but we are here. Take care and feel free to vent to us if you want to.. Good luck..

Allie

[jobasar]

Oh, I am right around Bev's liver resection as well. I know I had my first one a year before the second and yes I think they didn't get it all clean but the 2nd one was done last March of 2010 a year and half ago. I know they are watching a spot that lit up on liver but it said small focal but they mentioned poss. inflammation and or recurrence. Nothing else showed up but I know that it was by staples and maybe getting irritated. I know the radiologist have to mention everything so they don't get sued. I know I have been feeling great and I feel better now than I ever did years before my colon ruptured. Good luck to ya.

Allie

[Nickmark59]

I am out 3 from stage 4 CC and Tony the counter man where I buy alarm equipment is out 10 and friend who was stage 4 breast cancer is out 12

No answers how or why but where still here

[wifenurse]

My husband also had a single met to the liver. It was not seen on the CT scans at the time of diagnosis, but found upon physical exam in the OR during his colorectal resection. His primary was at the junction of the rectum and sigmoid colon, so considered rectal cancer and he had neo-adjuvant chemo/radiation prior to his surgery. There was a 3 month time frame from his diagnosis until his surgery (6 weeks of therapy, 6 weeks to let it do its work). His liver met was resected at the same time they did the colon resection. That was 18 months ago and he hasn't had any evidence of cancer since that time. He also completed the 6 months of post-surgery chemo (Folfox + Avastin). Today it is one year since we disconnected his last chemotherapy treatment. Working in healthcare and always seeing the work case scenarios, I never envisioned we would get through this battle. He is one year from treatment with no evidence of any disease on his scans and a CEA of 1.0. He is doing well - worked throughout his treatments and continues to live his life. Those months of treatment were tough, but at one year, I have been able to relax and have hope and belief that he will be with me for many years into the future.

Best of luck to you! This board has been a wonderful forum for support, learning, and encouragement for me.

[mymom]

Thanks for the feedback thus far. My mom is doing Folox and may introduce Avastin in about 2 weeks. She started Folfox in July. We got 4 opinions at area hospitals to compare treatments before choosing one. 3 said Folfox with Avastin and one (Sloan) said just Folfox. I believe Sloan feels if it reoccurs they want to be able to get in there for possible additional surgery in liver and perhaps insert pump (which i wanted from beginning) and i think you have to wait like 6 weeks for Avastin to clear your system before surgery. We are working with a local hospital with continuous Sloan consults. If insurance covered it, I would have Sloan as the main doctor but in conjunction with is better than nothing. And the oncologists trained together years back.