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Outdated Stats

scared99
Posts: 74
Joined: Jun 2012

You guys are all more experienced than me when it comes to this battle with cancer. I keep looking at survival stats and when I do i get pretty depressed. I have read on some websites not to even look at them because they are outdated. Is this true ?

Lovekitties's picture
Lovekitties
Posts: 3322
Joined: Jan 2010

In my opinion it is true. The reason being that it takes time to compile the information and publish the statistics.

I have seen stats published this year which are using numbers from 2005. That is 7 years ago, and I have to beleive that a lot has changed for the better in that time.

If you want to look at stats then you have to find out what the time period the information was taken from, not when the stats were published.

Marie who loves kitties

peterz54's picture
peterz54
Posts: 343
Joined: Feb 2012

to my knowledge there have been no significant changes since the advent of VEGF and EGFR inhibitors in mid 2000s. So stats that follow patients who were diagnosed after 2004 later will be more accurate and show longer survival than stats based on patients from earlier periods. But the web sites don't normally explain the basis for their stats and how old they are.

Keep in mind that the pace of understanding of the biology of cancer (cell signaling for example) is much faster now that researchers have genetic tools. Aside from drugs, surgical techniqes have made incremental improvements as well, and retrospective studies over the last 10 years have help provide phyicians with better guidance as to who will benefit from surgery. Studies also show that people who change their diets and eat very well (more plant food) with much less dependence on red meat do better than average (a stage 3 study disclosed this).

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Real statistics are usually based on twenty (+/-) years of recorded
historical data.

The so-called "latest statistics" are "projections" based on a
small example of time-limited data from trials and actual use;
projections are assumptions based on limited data.

Example?
I flip a coin three times and it comes up "heads" twice, therefore
we project that flipping it thirty times will provide "heads" twenty times.

People prefer to believe in what is easier to accept, real or otherwise.

I personally prefer to accept reality, and work towards beating
the odds; I hate to be blind sided.

My colon cancer DX was in 2006. Stage 3c or 4 were the two
different determinations at that time I chose to believe the 3c.
In 2011, I was told by my surgeon that I had been a stage 4 since 2006.

Does it really matter? I have had friends with stage one that had
not lasted two years after diagnosis.

Be aware of the poor odds, but aim for survival by using the
poor odds to drive you forward. Don't fear cancer, and do not
allow fear to steer your course.

Listen to your own gift of survival instincts, not other people's
opinions for your survival. Your body will tell you what's right
for you; trust thyself.

You can do this.

My very best wishes,

John

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

Statistically, the likelihood of my having appendix cancer was about 1 in a million - better than 99.99% against. However, that's what I had. Statistically, I shouldn't have had the complications and reactions that I had, but I did. However, I am also falling into the good small statistical group of patients with my cancer who do well.

Stats are made up of representatives - there are people that fall in both the "good" and "bad" groups. I tend to see the world more as 50/50.

Don't let stats frighten you. Yes, for one, they are outdated; lots has changed over the past few years. But also, you don't know which individual you will represent in that statistical group. I've tended towards the smaller group statistically, which has been both bad and good.

Alice

peterz54's picture
peterz54
Posts: 343
Joined: Feb 2012

I have found that some people are dismissive of statistics possibly because they see a threat to their ability to be positive or simply don't understand how to interpret a particular statistic. They are correct in the sense that it is very important for you to maintain a positive outlook and not automatically assume you will not make it through this. Each person is different and you might not be average. In fact it is improbable that you will be exactly average.

But there are many other valuable statistics, based on solid research, which should not be ignored: statistics which say that eating well and exercise improves outcome, statistics that say certain EGFR inhibitors will not work if you are K-Ras mut, statistics that say not to operate on the primary tumor if you are stage IV and suffer from no obstruction or bleeding. The list goes on....Physicians are guided by research which is summarized in the form of statistics and it is abosolutely foolish to be dismissive of this tool.

PatchAdams
Posts: 271
Joined: Nov 2011

.... statistics that say not to operate on the primary tumor if you are stage IV and suffer from no obstruction or bleeding.

Those primary tumors don't just sit around. Not ONE of the online friends I've met in the last 4 years who did not have their primary removed (even if it was shrunk away by rads) lived. In fact, the cancer spread and eventually grew back in those radiated spots. Lisa (Stag III r/c), John (Stage III r/c), Terry (Stage II r/c) ..... the list goes on.

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

When I consulted with my surgeon about the primary tumor, he advised radiation first to reduce the amount of tissue we'd have to remove. After six weeks of getting my tushie nuked, the tumor was erradicated. After two years, my colonoscopy a couple of weeks ago showed only a bit of scarring and no tumors or even polyps. Considering that he told me there was no way I was getting out of it without a colostomy bag, I consider it a flat out miracle.

peterz54's picture
peterz54
Posts: 343
Joined: Feb 2012

my take, from experts, is that surgery is no longer the first option for most stage IV patients. Start with chemo and go from there. Surgey may be warranted at a later time. Stage I through III are clearly different.

Video presentation at ASCO: Dr Paty of Sloan Kettering on Surgery for Advanced Colon Cancer

It is certainly true that if one doesn't know what feeds a statistic then it may be of little value, but if one knows how the statistic was derived it can be of value.

I can't understand how so many people here can discount the value of collecting and evaluating patient data and summarizing this data into statistics. How else are we going to know which therapies work best and under which conditions. I can only suggest that if one is truly interested in an answer to a particular question to look beyond the final numbers and go to the actual studies in order to see how the statistics and conclusion were arrived at.

danker's picture
danker
Posts: 1179
Joined: Apr 2012

Stats give average results. But none of us is average, we are each unique. Besides, averages can hide as much as they reveal. The barefoot man standing on an surface with an average temp of 80 degrees, could have one foot on a bed of hot coals and the other on a piece of dry ice!! LOL Live a day at a time and don't be afraid.

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

As Twain said "there are lies, d@mn lies, and statistics."

luvinlife2
Posts: 172
Joined: Jul 2012

Love your post danker! Couldn't agree with you more!!

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Good summary Danker
Tommycat~

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

They are not only outdated, they are inaccurate. Those stats include people who have had cancer and have died in car accidents, heart attacks and natural causes. They include people who are severely unhealthy to start. I went through the same thing a few months ago and then I did more reading. Stop reading not only because they are inaccurate but also because they don't actually help you in any way. Once in awhile I find myself starting to do more reading and I have to stop myself.

There is a movie called "The Help" that I watched one night when I was having a bad night (those are going to happen) and throughout the movie there is a cancer patient in the movie and she's always in bed and she's always down and at the end she says one line that was so inspiring, I immediately went to bed after hearing it. She finally says to her daughter who wants to move away from her so she can have her own life . . . ."You can go now, I've decided I am going to live". AMEN sista! I cried and I went to bed saying yes, I've decided to live! Let the drugs work, drink the water to get them out, let them work for you. Get motivated to exercise. Let your emotions be what they're going to be, up one day, down the next but all in all "I am going to live!" Yes we are! I highly recommend the movie even though I killed one of the best lines. It's a great movie.

PatchAdams
Posts: 271
Joined: Nov 2011

Stats cannot be relied on because they lump rectal with colon, old folk with young, those with co-morbidity (other illnesses such as diabetes or heart conditions) with those who are in 'perfect health' other than cancer. Weight and issues like drinking, smoking, poor diet, stress filled life, optimist/ pessimist are not factored in. On this and other forums, I've seen 'under treatment' for those who are on welfare or Medicare. There was a nice guy treated at the VA who had such a fiasco during his original surgery that I believe his cancer spread and early death was caused by an inept surgeon. He's lumped into those stats.

Stats are numbers and that's it.

As a side note, I read a study on PET scans this past week that said (loosely quoted) if an 80 year old woman is dx'd with a disease, surgery would be performed but the patient would not be offered other follow up care unless she or her family questioned the doctor. That 80 year old is included in those stats. That same article/ study had a remark by the 'reporter' that said less than 5% of Stage IV CRC patients are cured.

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

My gastro surgeon said to me once...the only stats to go by are 50/50. You either make it or you don't. Guess it doesn't get more honest than that.

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

My first oncologist gave the 50/50 Stat.
I don't ask about length of time.....

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