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The Problem with Statistics

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

An accepted philosophy on this board, and one that I endorse, is, “I am not a statistic.”  I came across this study (link) a few months ago, and it stuck with me, but I was really not sure why.  But with some further thought, it demonstrates that simple statistics can be misleading.

As a preliminary matter, let me say that I am not suggesting that anything in this study is applicable to me or anyone else on this board.  It is from Korea, it deals with stage 3c colon cancer (I am a 3b) and it deals with small numbers.  But what I want to draw from it is that a simple statistic, like only 52% of people in the study with 3c colon cancer survive five years (after “curative” surgery and 5-FU), can be modified widely by a person’s characteristics.

Because all medicine is personal, I will talk about how this applies to me.  When I got my staging, I of course looked at the research about my chances of survival.  The results ranged from a 50% to a 90% chance I would survive five years.  My doctors gave me a custom-tailored guess that I had an 80% chance of surviving five years with a six-month course of capecitabine and oxaliplatin, and a 70% chance of surviving without chemo.

I think looking at these numbers is useful and human.  Before surgery, I got my estate plan in place, but having an estimate of my life span helps me to decide how to spend my retirement savings (I am dipping into them liberally), when to take social security (as soon as eligible, for me), and whether I should go out an buy a Mustang GT (something I am holding off on until my next scan).  Honestly, if I get ten years past my surgery, I will be pretty pleased.

But the raw statistics are misleading.  For example, in the Korean study, the “average” five year survival rate for 3c cancer is 52%--pretty grim odds.  But, if you have left colon cancer (that’s me) and are male (guilty, again), your chances of surviving are much better.  I am terrible at math, but I think that gives a male with left colon cancer about a 89% chance of surviving five years–about the higher end of my research on my chances of survival.

So, a study which on its surface gives me a 48% chance of being dead in five years probably says I have an 89% chance of surviving.  And that is not taking into account things like lymph node ratios and issues like Microsatelite stability and KRAS mutations.  Also ignored are issues of age, physical condition, “comorbidities,” diet and so forth.  Additionally, there are dozens of strategies scientifically proven to increase your chances of survival, from eating a pescovegetarian diet, to having a healthy vitamin d level, exercising, drinking coffee and eating tree nuts, to taking a seemingly endless list of supplements.  Plus, there is additionally the saying, “it’s not the dog that’s in the fight, it is the fight that is in the dog.”

In conclusion, my point is this: It is hard to resist the temptation to look at the general statistics of what your chances of survival may be.  But you are not a statistic and countless factors can increase your chances of survival.  As for me, I work hard to optimize my odds for surviving; but hedging my bets, I also strive to live each precious day to its fullest.

 

See also, https://www.ncbi.nlm.nih.gov/pubmed/30755502

https://www.ncbi.nlm.nih.gov/pubmed/30761750

 

Annabelle41415's picture
Annabelle41415
Posts: 6116
Joined: Feb 2009

You are right.  There are a lot of components that go into every patient and one thing most new cancer patients do is look at stats.  It can be very frightening at the onset, especially for a newbie that doesn't have all their facts about themselves before they go searching. 

I'm a good one for telling people to stay off the internet, but when it comes to a new twinge or ache for me I'm the first to go searching - yikes - we need to stay away as so much of the internet is old and not up to what is actually helping in today's treatment.

Thanks for this Buddy.  People need to know they aren't a statistic and they need to be proactive as well. 

Kim

Christy76's picture
Christy76
Posts: 27
Joined: Feb 2019

the odds are different for each person so don't get too caught up in them. I'm still learning a lot as this is all new to me. I only got my diagnosis about two weeks ago and I had convinced myself that they were going to tell me I was cancer free despite my gut instinct telling me otherwise. My life has since been flipped on it's head but I will remember what you posted here. Thank you so much. Smile

 

Christy

myAZmountain's picture
myAZmountain
Posts: 241
Joined: Apr 2018

Statistics cannot measure the Human spirit and will to live. I worked in the Coronary Care Unit early on in my nursing career. I saw patients that statistically should recover will themselves to die. I saw patients that statistically should never have survived fight to live and do so  despite massive heart attacks. I really appreciate your posts SandiaBuddy, thanks so much! As a Stage 4 CRC I avoid the numbers entirely--they are too grim!

dybmapi
Posts: 3
Joined: Jul 2018

Hi, i also had stage III colon cancer, which was dealt with by a surgery, and an adjuvant chemo for 12 sessions every two weeks, hence 6 months. THat ended two years ago exactly,a nd i jsut had my portacath taken off,as everything is clear. THe rate given in your Korean study is lower than the world average, and that may be due to specifics of the Korean people's genetic make-up, so i would discard this data as irrelevant to you, with a western life style. In our case, the average survival rate at 5 years is close to 70%, and rises regularly. This is the piece i wrote about the use of stats in the blog i kept during my illness, it may be intereting to you, but apparently this site doesn't want me to paste it, so here's the link, in case you're interested: https://dybmapi.livejournal.com/?skip=60

 

Best,

 

Pierre

 

PS: buy that car you want

 


SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

Thanks for the link.  Congratulations on making it two years past chemo.  The point I think I was trying to make in the post is that to check statistics is human, but that statistics are like putting a bunch of ingredients in a blender and mixing them up.  Age, sex, physical condition, tumor size, tumor location, cancerous lymph nodes, quality of medical care, they are all blended into a single, backward looking number.  My goal is to beat the statistics. [and I will only buy the car if I know I am on a fast-track out.  Otherwise, I will stick with more conservative transportation ;) ].

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Get the car! I drive a newer Camaro and it lifts my spirits to drive it. Not so much when I can't and my husband drives me in it, though. He drives like an 80 year old. Mine's just a V-6 but it's plenty fast enough and we have winter tires on it and it's even good in the winter. 

Anyway, addressing what you said, absolutely. I use the stats of my PE. They said after that I'd had probably a one in a thousand chance of surviving, let alone surviving and being mentally intact. Some may dispute that, ha ha, but the fact is that I'm exactly the same as I was. So if I can do that I can beat this crap. Or at least try. Hopefully at least keep myself alive long enough to see a cure developed.

I never look up my cancer on Dr Google, too depressing. 

Jan

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

Aw shucks, a cute blonde in a red Camaro, you must really stand out!  Those GM six cylinders have plenty of power and don't require premium, so it makes a lot of sense.  Actually, my budget does not currently allow for the Mustang, so I will only buy it if they say I am dying soon.  If they say I am living I will probably do a little work and earn some money, so the car can always sit just over the horizon.  In the meantime, I get a Mustang every now and then when I rent.

SophDan2's picture
SophDan2
Posts: 134
Joined: Jul 2017

Hi Sandia (and everyone else),

It sounded like that study was talking about me, diagnosed with Stage 3C CC in May of 2017. Had surgery, went through 5 FU Folfox and tolerated the treatment well enough, leaving me with slight neuropathy (but tolerable). I have been clean since Novemenber 2017, and like us all, being watched like a hawk. I am a half full glass kind of guy, so I only look at the survival percentages not the death percentages, and even then I don't believe either!

I pop on to this forum from time to time, and don't always pipe up, but I have always appreciated your, Trubrit and JanJan's input. We all deal with this cancer sh-t in our own way, which allows us to see life for what it is LIFE; and I certainly appreciate and enjoy my life as it is, because the alternative is not in our hands.

I appreciate all on this forum for the input, since the day I popped on and said "I'm new here"!

Buy the mustang!

Barry

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I agree, buy the Mustang! I can't tell you how uplifting it is to step on the gas and have my car take off. We live in a small town and people know me by my car. It's bright red. I love it! It makes me feel stronger and not like a victim when I drive it. Which I haven't in months but will soon. Maybe this week. I have two appoinments in the city and if I have to sit there while my husband drives one more time I'm not going to be responsible for my actions.

I'm sure some people that see me think I'm going through a mid life crisis. But whatever, get into your Corolla or Versa or whatever uncool car you drive while I enjoy my Camaro. I'll be laughing as I pass you!

Jan

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

Thanks, Barry, it is always good to hear from you.  Great news on your NED.  And with each passing year the chances get better.  My next scans are staring me in the face on the calendar, but if I make it through okay, I get to go to once every six months.  Here's hoping. . .

MGB2
Posts: 3
Joined: Jul 2018

According to sloan kettering I have a 85% 5 year survival rate and a 91% disease free (87% if I do chemo) in 5 years, not really sure what to think.  Evidently there is a 6% chance of not surviving 5 years with no cancer reoccurance? So decided to  just  "live lucky" every new day I consider myself lucky. 

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

Early on, I decided the risk of dying from other causes (accident, heart attack, etc), should come off the bottom of the cancer overall survival statistics.  Depending on your age and other health conditions, it is around 1-2% a year.  There is an interesting quiz from the UK you can take here.  See also link.  Living lucky every day sounds good to me.

Butt's picture
Butt
Posts: 274
Joined: May 2018

Stage 3 is very different from stage 4 period. 

beaumontdave's picture
beaumontdave
Posts: 960
Joined: Aug 2013

Yeah when it showed back up in three spots in my liver, I felt acutely aware that I'd become a 4, but fear's fear and the initial shock at first diagnosis was greater than any subsequent anxiety. It's all relative to the person..................................................Dave

Diane_K's picture
Diane_K
Posts: 49
Joined: Jan 2019

Everyone who has had cancer regardless of their stage has suffered with fear and pain. The treatments and surgeries are barbaric, and the fear of not knowing if it has spread is terrifying.

I wish everyone peace.

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

Here is another example of the problem with statistics: https://www.ncbi.nlm.nih.gov/pubmed/30805809

Primary tumor location may be a prognostic factor for patients with non-metastatic colon cancer. The prognosis for patients with right-sided tumor may be better for those with stage 1 or 2 cancer, but worse for those with stage 3 cancer.

Joan M's picture
Joan M
Posts: 363
Joined: Oct 2016

That statistic is now at 14%.  However, so many factors play into the overall survival rate, that is is not a great way of figuring out your own estimated survival rate.  I've read of those with stage 1 cancer that progresses to stage 4 even after surgeries and chemo.  I've heard of those with stage 4 that survive 15 or more years and still going strong. There are so many individual factors that affect survival but I still find the statistics helpful.  

My attitude is to live each day grateful to be alive and hoping to accomplish whatever tasks are at hand. whether it is an exciting day or no matter how mundane I'm just happy to be alive.  Of course some days I am angry that I have to deal with Stage 4 colon cancer: angry at myself for not having colonoscopy sooner, other times angry that I was the unlucky one to get the stage 4 cancer.  Mostly I am just sad about it all, and that anyone has to have cancer at all.   I love the St. Jude commercials that talk about how the survival rate for childhood cancers has increased from 5% to over 80%.  I hope the researchers can figure out how to cure cancer so it can be one of those diseases that we don't even hear about anymore. 

I like fancy cars but don't need one.  Limited budget now is frustrating.   I would love to travel, and wish I had money to travel to Europe, Africa, Asia.  My money has been going to raising kids and traveling to Houston and Mayo Clinic for medical care.    

My youngest child was a freshman in high school when I was diagnosed, and I prayed that I could see him graduate from high school. I was looking at that 5% 3 year survival rate and praying to be in the 5%.  He graduates on June 2, 2019 and God willing I will be here for that day.  Now setting that goal to see him graduate from college, marry and have children.  Of course I'll reset the goal to see those grandchildren grow up too.  Another 40-50 years?

 

beaumontdave's picture
beaumontdave
Posts: 960
Joined: Aug 2013

I looked at stats early on out of morbid fascination and an abundance of confidence that I, as a 3b was going to beat this stuff. Once my wife was diagnosed with a more deadly cancer [glioma] I stopped wanting to know anything of odds and stats, and that continues to this day. I figure I've bucked the odds, so far, and that's enough to know. Sandia's right, of course that all the details of where the mets are, diet, health, weight, etc boost the odds or detract, and I certainly want to optimize my chances, but Cindy's cancer didn't allow for strategizing much, as it wasn't in any known sense related to lifestyle or diet. The trials and immunotherapies weren't available to pursue then either, so we lived in the now, day by day, just following the program when required, and blocking it all out, the rest of the time.  Everyone has to chose what hard truths they want to know, and when a level of ignoring it all, beyond the necessary elements,  might be useful to one's mental state. Good luck to all in finding their way through it............................................................Dave

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Dear Ones,   I havn't been here for a long long time.  I just read the statistics thread and wanted to comment.  Back in 2007 I had emergency surgery for a bowel obstruction (after being misdiagnosed for 2 years, hysterectomy in 2006).  They discovered a lemon size tumor.  Had resection and my Staging was IIIc.  Back then my statistic were 50/50 for 1 year survival with chemo.  I don't need to go into all the trials of surgery and chemo...it was horrible for me.  I am not the same person I was, but I am happy and blessed to be here.  Chemo brain, neuropathy in hands and feet other difficulties.  I am sad that I let fear overcome me in so many ways during this journey.  It robbed me of my peace and joy at times.  If I could give any advise it would be to take one day at a time and live the best life you can.  I have my faith and pray for all of us.  I am open for any questions you may have. l Just didn't want to bore you with all the things you probably already know. 

 

Much affection, Debbie 

abita's picture
abita
Posts: 578
Joined: Dec 2017

I have that same thing about savings. I save because I truly believe I will make it, but I also no longer deny myself the nice things I want very much because tomorrow is not promised to me anymore. It is odd that I can have these thoughts almost simultaneously.

My surgeon's student, above intern, but chemo brain, can't think of what that is right now, told me my diagnosis, said 1 in 20 live 5 years. The next day was a Saturday but my suregoen came to check on me to see if I was handling the news. He was clam, but I could tell furious that she said that. So he said she is surgery, not oncology surgery and doesn't know And stayed with me for quite some time describing how he had helped patients with stage 4 live to as much as 20 years, and still going. He is the reason I mostly think I will survive. Ovbviously, I have my down depressing days too.

zx10guy
Posts: 195
Joined: Dec 2013

I found a few predictive tools when I was first diagnosed.  Here is one from MSKCC.

https://www.mskcc.org/nomograms/colorectal

I like this tool because the sampling size is decent and it's interactive allowing you to input your specific information into the tool for a tailored result.  There are others out there which you can find by doing a search for nomograms.

We all know the pain of being a cancer patient/survivor.  Being stage 4 or recurrent is specific kind of hell.  My situation while it doesn't compare to someone being stage 4 or recurrent, is also a different hell.  I've lived up to the statistics being stage 3b with only 1 out of 17 lymph nodes and with left colon involvement being NED since my diagnosis Dec. 2012.  But my situation is complicated because I had a second cancer caught early at stage 0 in my appendix.  And I'm still dealing with high CEA levels now coming up on 2 years since the initial spike we don't know what to make of.

To compound the issues with health as I'm being followed for a cardiac issue currently even though I'm one of the healthiest cardiac patients my doctor has, I'm dealing with personal issues with a failed marriage.

On the topic of cars and having an escape, I can be viewed as an adrenaline junky.  I've been doing motorcycle track days for something on the order of about 15 years.  It's one of the few outlets where I have to focus on what I'm doing and I can forget everything that is my reality.  Here is a pic of me on the track:

And a pic of my toys:

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

Love the pictures! Thank you so much for posting them. It is good to 'see' members. 

Tru

zx10guy
Posts: 195
Joined: Dec 2013

Thank you Tru.

Annabelle41415's picture
Annabelle41415
Posts: 6116
Joined: Feb 2009

Wow that is scary.  Two of my boys had bikes like this and it scared me so bad when I'd see them drive up.  They loved them though.  Glad you got some toys to play with.

Kim

zx10guy
Posts: 195
Joined: Dec 2013

Hi Kim,

My mom hated when I got into riding.  Tried her hardest to get me to sell off the bike at the time.  Little did she know I would end up with three.  I sold off one of them a few years ago.  Never rode it much.  She doesn't bother me about them any more since it's been about 16 years since I started riding and I'm still all in one piece.  Riding is one of the few outlets I have.  And riding on the track in many ways is safer than the chaos on public roads.

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

Thanks for your comments.  Interesting, the tool you mentioned gives me better chances than my doctors did... That's the problem with statistics.  Nice toys.

zx10guy
Posts: 195
Joined: Dec 2013

You might also try Adjuvant Online.  It's a tool used by doctors to get predictive results on a particular patient's prognosis.  You're supposed to be a doctor to create an account.  But I decided to try and create an account with some fake info.  I was able to get an account created and plugged in my numbers.  The PA in my previous oncologist's practice had used Adjuvant Online when we discussed prognostic outlooks.

Thanks for the compliment on the toys.  If you have the means to get the Mustang, I think you should.  No use getting it if things go south with your health.

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

I would certainly get the car if I knew I was checking out quickly, but hey, what if I live another 20 years, I think I need to save a bit.  That is the dilemna.

abita's picture
abita
Posts: 578
Joined: Dec 2017

It is such a conundrum! Sealed In mere minutes I can go from I need to save for my goal of being little old lady with lots of cats to let me buy these dresses because will I even be here next year.

Capox Dude's picture
Capox Dude
Posts: 18
Joined: May 2019

But it only shows a 2% better prognosis of being disesae free with chemo than without at 5 years, and only 1% at 10 years.   So they have their limits. 

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

Here is another variable to throw into the mix: https://journals.sagepub.com/doi/full/10.1177/1724600818820679?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed

Preoperative serum CEA level was measured in 2093 patients with colorectal cancer. No significant association was found between an elevated preoperative serum CEA and locoregional recurrence (adjusted hazard ratio (HR) 1.29 (95% confidence interval (CI) 0.91, 1.84; P=0.26)). However, a significant association was found between an elevated preoperative serum CEA and systemic recurrence (adjusted HR 1.58 (95% CI 1.25, 2.00; P<0.01)]. The five-year disease-free survival was lower in patients with elevated preoperative serum CEA levels (P<0.01). Postoperative serum CEA level was the most sensitive for hepatic metastases during follow-up (73.3%).

Capox Dude's picture
Capox Dude
Posts: 18
Joined: May 2019

A high CEA is also associated with mets, so it makes sense that some missed non-local microtumors would resurface in the higher range CEA grouip - no?

BTW, thanks for the info.  I really like to look at all of the information and talk to my doctor about the things that pique my interest.   For example, the studies on how right side cancers being less survivable seem gloomy until you find the ones that directly refute and queston that finding.    And anyway, I am far more concerned wtih the things I can do (like diet and supplenments and exercise and taking Social Security now than later so I can do more travel), and less worried about things out of my control - like which side my tumor chose to grow.   

sharps4590
Posts: 3
Joined: Mar 2019

What's the old saying?  There's liars, d___n liars and statiscians.  Not to make light of any of it but as a hope to insert a little levity.  I am stage 3 and just finished my 6 months of chemo.  It's been an experience, that is certain and, not one I would recommend.....for most folks....Wink  I found this site when looking for information on new aches and pains, just as others have mentioned.  With my wife having survived a non-Hodgins lymphoma tumor in her meningioma 3 years ago and now me so far having survived colon cancer seems a place one of us needed to be.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

That's interesting. My CEA never went up when I had the original tumour, it was always normal. But the mets make it go up and now it seems to be a pretty good indicator of what's going on. And I was diagnosed just over 5 years ago. And right now I feel amazing.

Jan

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

…being born is terminal. Two thoughts on statistics. First, they are usually extremely broad. And second, when I was dx’x I believe the 5 year survival rate was 5%. My attitude at the time was Why can’t I be part of that 5%?. 

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

I am with you. I call my approach "optimizing the odds," but with the same goal--survival.

danker's picture
danker
Posts: 1176
Joined: Apr 2012

I own a 5.0 liter mustang.  In northern New Mexico i put it up to 150 for a short distance.  As men and boys we love our toys!!

SandiaBuddy's picture
SandiaBuddy
Posts: 840
Joined: Apr 2017

As part of my meditation, I touch base with my inner child, and he says, "let's play cars!"  My interest in cars has been lifelong, but I think I have become too cautious for 150. . .

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