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crc has a five year survival rate of ZERO?

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I just read a post that really got me down today. It is under the posting about death if anyone wants to have a look. It came from a old post that somebody states that crc has a five year survival rate of ZERO?

Well, I dont know about anyone else but I dont think that's true. A lot of very old information is out there. I'm sure many out here have more then 5 years. Lets hear from them.

Brooks

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Brooks,
That's not a true statement. (Diane quoted someone else so it wasn't Diane's quote.) There are folks on this board who pop up at times to check in and let us know they are 7 years, 11, years and over who were dxd with crc. New treatments are coming all the time. I know folks on the board who know that with each new day someone is working on a treatment that will give folks more hope and more time.

One day at a time.... old cliche but soooo true. Dick and I find it best to do something to renew our soul each day. For us it is getting in or on the ocean and fellowshipping with friends, family and neighbors.

Best to you.

Aloha,
Kathleen

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Brooks

Those stats are very old. Just this year new stats came out (someone on the board good at having that fact at their fingertips will send them along). Just FYI I was dx stage 4 rectal cancer 5/08 that was resectable at dx (one met to the liver). I've had 2 surgeries, radiation/chemo. The stats for me for a cure when I started were 33%. They are greater than that now with the new figures, and perhaps even more because of my response to tx.

Also remember that stats refer to a group, and not to the individual. You are an individual. We are not baseball stats.

Leslie

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

but it sure is a bummer remark. I found it by checking the profile on an interesting guy off one of the bumped posts. It really bothered me even tho I KNOW it's wrong info.

Here's the profile link with that 2007 remark.

Click Here

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

Yeah, that came from Bud. Sadly, he lost his battle. He was a special person to those of us who knew him. He fought very hard, all the way to the end.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I've been dead for 3/4 of a year then. That must explain the lack of phone calls I receive.

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Dude... you're the best

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

You rock!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

ME TOO! Adios, Amigo...
I don't get alot of phone calls, but I certainly get all of the BILLS!

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Me too!! Thanks Phil!

(Hope you like my Fender action shot!)

Rob; in Vancouver

neon356
Posts: 137
Joined: Mar 2004

Yo Brooks
Stage 3 crc diagnosed 1993. Sixteen years by my count and still kickin'!
Carl

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

I am one of those 11 year people they are talking about February 13, 1998 to be exact I was diagnosed with Stage IV colon cancer.

My doctor went before a board of peer doctors to decide what stage I was going to be. He begged and pleaded because I was a female, 31 years old, full of piss and vinegar; you know the kind that anyone tells me I can't, I am damn well gonna show them I can. That pretty much goes for everything. They kept me at stage IV. It had gone to 16 of the 32 lymphnodes. They did a right-hemi colectomy and they hooked me back up. I was good to go. I did a year of chemo. I don't know if you guys do the chemo as often as I did it or not. It seems from what I have read you guys might get a few more days in between. Let me know please and verify that for me.

I did 5-FU and Leuc 3 to 4 times a month for 3 months(sometimes I was too sick to get it) until it almost killed me.It shut my Kidneys and Liver functions down too many times to count so they stopped the Leuc.

They switched to 5-FU and something else sorry can't remember the damn name of it off the top of my head. My mom and I were just talking about it, too. Anyway I did that every 7 days for the next 6 months. I was one sick puppy. Towards the last 2 months my body kind of got used to it and I was nauseated but not sick. I wasn't able to work to wiped out but I wasn't curled up on floor or on the toilet anymore.lol

I am here so don't go with the stupid ball park figures. 99% are old figures. They have to take into account the person they are dealing with and the stage and how it is reacting and how you are reacting.

Okay, so relax take a deep breath and say HELL YEAH ITS ON LIKE DONKEY KONG!LOL Teasing aside, you can do this, keep the negative vibes away, when you feel them coming on tell your loved ones lets go, get that crazy video, get the friends, get some good charma going and move forward. I know the thoughts are always there. But you are IN CHARGE of those thoughts and that is one of those things that you can control in this helacious fight against this hideous disease. Make it a Great Day Everyday!! Stage IV 11 Years Cancer Free
Goofyladie (Cass)

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Thanks for the great post... You guys are a great help on them days that things just seem too much. I'm not really worried about the 5 year thing. I know it's old stats. I just thought it's good to hear from all you "Old Timers" LOL

Lv Ya
Brooks

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

like your style brooks was just going to say were ever you found that post from definitely old stats you just have to look at our online family for it to be proved wrong.hugs sonia

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

If your calling me an " Old Timer with the Cancer thing" it's cool BUT the years(age) thing I'm still workin on! lol Make it a Great Day
Goofylady (Cass)

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Old Timer = 11yrs NED.

Thanks again
Brooks

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

I love your spunk. you had chemo every day????? I'm stage 4 w/liver mets....you give me hope!

Peggy
see my jouney at http://www.peggyluckey.blogspot.com

zigswife
Posts: 62
Joined: Jul 2009

MD Anderson's website has an article posting in May of this year that notes that the 5-year survival rate is predicted to be close to 30% due to advances in treatments, including increasing the number of people eligible for liver resections. As more treatment comes along, the number should keep going up!

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Every year the odds keep getting better, as they are based on people getting newer treatments than they used to.

I know a lot of people get upset about numbers and odds, but I am one of those numbers people. Sorry, it is in my blood (accounting degree).

I got numbers from my onc to help me decide if I would agree to the Oxy or not. I knew I needed to do chemo, but not sure about risking the neuropathy since I also have RSD/CRPS and am currently in remission. I just don't want to risk coming out of remission with that.

The numbers he gave me were very specific to my tumor, (moderately differentiated, stage III, 5 of 17 nodes +), clear margins, my general health and history (minor problems) and my age. (The thing is now we aren't sure if I'm stage III or IV after some node and liver light up on a scan - could be surgery trauma - could be cancer.)

Assuming stage IIIc:
With NO treatment at all, 41 alive and without cancer in 5 years, 58 relapse, and 1 dying of other causes. With Xeloda or 5-FU only, besides the 41 alive w/o recurrance, 20 more are alive with no cancer due to chemo. They call this a 43% risk reduction. There are still 38 listed with relapse. But that is a lot better than 58!

If Oxy can be tolerated, 29 more alive without recurrance due to chemo, and only 28 relapse. The proportional risk reduction is 59% over doing nothing, and 16% better than 5-FU alone. So in my mind, it is a no-brainer to at least try it all.

I don't know what your numbers would be, but I doubt they would be any worse than mine. So if you've done Folfox, you have a 70% chance of being alive AND cancer free in 5 years. That is a FAR cry from no chance in 5 years!

If you fight, your chances are great!

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

what if your stge iv, how are the numbers?

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I don't have access to the doctor's system - the only one I can access is an abbreviated version that isn't as updated or accurate. My doctor actually uses one that goes through the Mayo Clinic, and they keep it more current (if there are no studies done that apply) and you choose more variables. I can access the page, but I can't sign up because you have to be a medical professional. So I have the print-outs for my options only which my doctor got for me.

There is a patient version, but it doesn't have as many options, and the numbers are a little different. I pulled that up right now.

It shows me for stage III, under age 49, 5+ nodes, low grade (moderately differentiated - the numbers will change with poorly), with surgery and FOLFOX as 5-yr recurrance free survival at 54%, with overall survival at 65%. It shows 40% reduction in recurrance and 34% reduction in death if using 5-FU. But with FOLFOX it gives an additional 24% benefit for both categories over 5-FU alone. (These numbers are for node +, they are different for node- for the benefits of chemo.)

But if I change myself to stage IV (which I may be - we aren't sure), with surgery and FOLFOX, 41% chance of alive and no recurrance in 5 years. 53% chance of survival in 5 years. Once again using chemo gives big boosts over no chemo, with FOLFOX doing more than just 5-FU. This particular calculator does not work for other drug combos.

So, even if I am stage IV, my chances of living another 5 years are HIGHER than dying in the next 5 years using this program that isn't as "particular" as the other one - and that other program gives me a little better odds yet.

This breaks nodes+ into 0, 1-4 or 5 or more. I had 5. So it is basically saying that just because I have 5, my numbers are a lot worse than if I had 4. When I change nodes to 1-4, 72% 5-yr NED, and 81% 5-yr alive for stage III. The same with stage IV is 60% and 73% respectively. I tend to feel these are much closer to my real chances. For this simple calculator they had to choose a cut-off and it just happens I am on that cusp.

So anyone that says there is no hope for stage IV doesn't have a clue what they are talking about. This is based on a very large Mayo Clinic study - I'd put more stock in that than someone spewing off that stage IV is terminal. Take a look at all the stage IV survivors just on this site!

zigswife
Posts: 62
Joined: Jul 2009

Kathryn-
Is that from the Mayo website and if so, in which portion? I'm a numbers girl myself and actually teach statistics in my "spare" time! I would love to play around with that information.

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Yes! I think that is where the new 30% survival statistic comes in. We cannot underestimate the incredibkle boost we have gotten from new liver procedures!

Be Well... Rob; in Vancouver

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

Well, then maybe I'm not really here! I am an 8 yr. survivor of stage 4....unless maybe I'm just my own imagination!! Does this mean I don't have to pay taxes? lol

Happy Tuesday!

Stacy

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

That cracked me up Stacy, another inspiring member of the long surviving family :)

Hugsss!
~Donna

Mchapp's picture
Mchapp
Posts: 96
Joined: Jul 2009

Colorectal Cancer:
Preventable, Beatable, Treatable!!!

This is from a 2009 powerpoint for staff of the American Cancer Society - posted and one that I presented to many areas in WV in March (colon cancer month)

5-year relative survival rate for localized disease is about 90%
Localized cancer is cancer that, at the time of diagnosis, had not spread to additional sites within the body. Typically, the earlier a cancer is detected and diagnosed, the more successful the treatment, thus enhancing the survival rate.
5-year overall relative survival rate is 64%
The 5-year relative survival rates represent persons who are living 5 years after diagnosis, whether disease-free, in remission, or under treatment. They do not imply that 5-year survivors have been permanently cured of cancer.

Researchers are testing prevention methods, including whether fiber supplements, minerals, medicines, and vitamins can lower risk.
Studies are expected to lead to new drugs and gene therapies to correct genetic problems and warn people most at risk.
Scientists are also studying combinations of new chemotherapy drugs, new ways to combine proven drugs, and ways to combine chemotherapy with radiation therapy or immunotherapy.
Overall, only 40% of colorectal cancer patients
diagnosed between 1996 and 2004 had localized-stage
disease, for which the 5-year relative survival rate
is 90%; 5-year survival rates for patients diagnosed
at the regional and distant stage are 68% and 11%,
respectively (Figure 4).15
• Between the mid-1970s and 1996-2004, the 5-year
relative survival rate for colorectal cancer increased
from 51% to 65%. A significant advance in colorectal
cancer treatment in the late 1980s was the introduction
of 5-fluoroucil-based adjuvant chemotherapy for
resectable (operable) stage III colon cancer, which
reduced mortality by as much as 30%.16

and remember
Help from the American Cancer Society is available 24 hours a day, seven days a week.
To reach us:
Visit the American Cancer Society Internet site at www.cancer.org.
Call toll-free, 1–800–227CS–2345.

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Thanks for the updated information. I'm sure it will be very helpful to many of us on the board.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

My onc had not met me when he did my 'stats', nor had he seen any health information other than information on my cc. I was told 68% based on aggression of tumor, number of nodes, age and 'fair health'. 48 cured by surgery alone. 20 cured by addition of chemo and 3 died of other causes. I am 3B.

The next visit I was told due to my excellent health and good weight, my numbers were actually 75% disease free survival at 5 years. (Another 3% was people who died from other causes)

I don't remember which hospital / group my onc used for stats. It sounds like Kathryn's tho. I just grabbed onto the 70-75%. The 3 out of 10 chances of NOT being healthy in 5 years is overwhelming to me at times.

I hate stats and I hate cancer.

Jimbob-'s picture
Jimbob-
Posts: 50
Joined: Jan 2008

I was Diagnosed and had Surgery in april of 2005.

I am going to die of something But I guarantee you it is not going to be Cancer.

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

what stage are you? Patti

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

For those of us that knew Bud from this great website (the originator of the comment) and know where he was in his journey at the time of that remark know to not read too much into it!!!

He was on serious pain killers and was trying to let folks know that he had beaten the 5 year dismal prognosis and give hope, not take it away.

Bud was an amazing person (as Stacy already has said) and was our resident researcher for new and inspiring things. He would never have wanted a comment like that to even be on his webpage much less repeated like it was.

Lisa P.

Hey Bud sweetie, I just made my 5 year mark. CP7 is next week and we will raise a toast to you as always. Save a dance and a place for me up there my dear friend!!

clier
Posts: 29
Joined: Feb 2009

Hey, I'll throw in my 2 cents' worth. When I was dx in 3/09 with Stage IV (8 masses in the liver), I was seeing 8% survival rate after 5 yrs. Even those stats are a bit older - more recent ones we've seen are around 30%. But, as my oncologist points out, no doctor has any way of plotting you, or me, on that statistical curve. We're looking for predictions that don't exist. That being as sucky as it is, it does bring us back to the one-day-at-a-time philosophy, which is pretty smart, when I can do it.

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