statistical question

UncleBuddy

My brother asked me if the 5 year survival rate is from when he was originally diagnosed with rectal cancer or when he was diagnosed a year later at stage 4? I told him statistics don't mean very much because he is young and most of the statistics are based on older patients (I think). Anyway, does anyone know? 

Lin

Lovekitties

Stats

You may find this site helpful in understanding the meaning of cancer stats in general

http://www.cancersurvivalrates.net/cancer-survival-rates.html

 

I personally don't like statistics as they only take into consideration the stage of the cancer and perhaps gender or ethnic background.  There are so very many other factors which influence the course of the disease.

Please remind your brother that there is always reason to beleive that he can be on the good end of any statistics he reads or hears about.

Marie who loves kitties

UncleBuddy

Lovekitties said:

Stats

You may find this site helpful in understanding the meaning of cancer stats in general

http://www.cancersurvivalrates.net/cancer-survival-rates.html

 

I personally don't like statistics as they only take into consideration the stage of the cancer and perhaps gender or ethnic background.  There are so very many other factors which influence the course of the disease.

Please remind your brother that there is always reason to beleive that he can be on the good end of any statistics he reads or hears about.

Marie who loves kitties

Thanks Marie!

I told him he already beat non-hodgkins lymphoma, he can beat this as well. His doctor said she sees a 15% 5 year survival rate, but there's no reason he couldn't be part of the 15%. She is very encouraging, but also very honest. She told him he needs to change his lifestyle habits, but so far he hasn't. He almost died twice in the past couple of months from complications, so he has a strong will to live. He was originally thinking about stopping the chemo because of all these issues, but after talking with the doc and understanding what will happen with/without chemo, he chose to continue chemo. I'm here to support him and help him any way I can. Since he's intellectually disabled, he has a lot of questions. Sometimes he comes up with some very intelligent questions. I hope all is well with you.

Lin

annalexandria

UncleBuddy said:

Thanks Marie!

I told him he already beat non-hodgkins lymphoma, he can beat this as well. His doctor said she sees a 15% 5 year survival rate, but there's no reason he couldn't be part of the 15%. She is very encouraging, but also very honest. She told him he needs to change his lifestyle habits, but so far he hasn't. He almost died twice in the past couple of months from complications, so he has a strong will to live. He was originally thinking about stopping the chemo because of all these issues, but after talking with the doc and understanding what will happen with/without chemo, he chose to continue chemo. I'm here to support him and help him any way I can. Since he's intellectually disabled, he has a lot of questions. Sometimes he comes up with some very intelligent questions. I hope all is well with you.

Lin

I think the best thing to tell him is that Mark Twain quote...

"There are three kinds of lies:  lies, damned lies, and statistics".

I'm kidding...sort of!  Those numbers don't tell the full story of any one patient's experience, and you're right that most studies are not full of young cancer patients.  Most are quite a bit older, with lots of co-morbidity (they have other illnesses that complicate things).  To really get the most utility out of stats, you would need to have a study filled with patients very like your brother. Which of course doesn't exist.   So I would encourage him not to worry about the numbers too much.

And that is a smart question to ask...a lot of us who are supposedly "normal" in our intellectual abilities would not think to ask it.

janderson1964

Statistics are outdated by

Statistics are outdated by the ti me they are made public. I have read that it can take up to 10 years to gather statistics. Just think of all of the advancements in cancer treatments in the past ten years that are not fully represented in the statistics.

BTW all I ever read about is 5 year survival statistics. Why dont they study ten year survival statistics even for stage IV. There are severl on here who are rapidly approaching 10 years.

LivinginNH

Newer Report

 

Hi Lin,

The report "Colorectal Cancer Facts & Figures 2011-2013" may provide much of the information that you are seeking. 

http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-028323.pdf

Take care,

Cynthia

karguy

Don't

Don't pay any attention to the stats,I think they are only a guide.If I went by the stats I would be dead now.I started out as stage three in 2008,then became stage four in 2012.Now the cancer is back again,but I'm still making plans for this summer.Everyone is different,there is no expiration date.My neighbor was told that he had only 6 months to live,that was 17 years ago,and he has no intention of going any time soon.My oncologist calls me the cat with 9 lives,I say it's because I refuse to give up.You should never,ever give up.Good luck.

UncleBuddy

annalexandria said:

I think the best thing to tell him is that Mark Twain quote...

"There are three kinds of lies:  lies, damned lies, and statistics".

I'm kidding...sort of!  Those numbers don't tell the full story of any one patient's experience, and you're right that most studies are not full of young cancer patients.  Most are quite a bit older, with lots of co-morbidity (they have other illnesses that complicate things).  To really get the most utility out of stats, you would need to have a study filled with patients very like your brother. Which of course doesn't exist.   So I would encourage him not to worry about the numbers too much.

And that is a smart question to ask...a lot of us who are supposedly "normal" in our intellectual abilities would not think to ask it.

Thanks AA

I love the quote, haha!

I keep telling him that none of us have an expiration date stamped on the bottom of our feet. I think he's just trying to make sense of things.

Lin

UncleBuddy

janderson1964 said:

Statistics are outdated by

Statistics are outdated by the ti me they are made public. I have read that it can take up to 10 years to gather statistics. Just think of all of the advancements in cancer treatments in the past ten years that are not fully represented in the statistics.

BTW all I ever read about is 5 year survival statistics. Why dont they study ten year survival statistics even for stage IV. There are severl on here who are rapidly approaching 10 years.

Yes, most are very outdated!

I have no idea where the #5 came from. 

Lin

UncleBuddy

LivinginNH said:

Newer Report

 

Hi Lin,

The report "Colorectal Cancer Facts & Figures 2011-2013" may provide much of the information that you are seeking. 

http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-028323.pdf

Take care,

Cynthia

Thanks Cynthia!

I'm going to check this out.

Thanks for the help.

Lin

UncleBuddy

karguy said:

Don't

Don't pay any attention to the stats,I think they are only a guide.If I went by the stats I would be dead now.I started out as stage three in 2008,then became stage four in 2012.Now the cancer is back again,but I'm still making plans for this summer.Everyone is different,there is no expiration date.My neighbor was told that he had only 6 months to live,that was 17 years ago,and he has no intention of going any time soon.My oncologist calls me the cat with 9 lives,I say it's because I refuse to give up.You should never,ever give up.Good luck.

Thanks Karguy!

We tell my brother he has 9 lives, too. He has already beaten non-hodgkins lymphoma and has survived several near misses and keeps coming back fighting. The people on this site give us all hope. Reading about all you people who have surpassed the surviva rate is very encouraging for him. Thanks.

Lin

devotion10

Lin …. Your brother’s questions are insightful.

Prognostic factors vary so much with recurrent cancer. Think about it … so very many variables … the general health of the individual prior to their diagnosis, co-mormid conditions, whether they had surgery and chemo or chemo alone when first diagnosed, how old they are, the length of time between initial diagnosis and reoccurrence, the stage and grading of the original tumor/s, whether they are chemo-naïve at the time of reoccurrence, side-effects or complications of initial treatment, weight loss, response to treatment after reoccurrence …

Some folks seem to like to know their odds; they read the information, accept that it may not apply to them and move on.  Other run from the statistics and down play any relevance to their situation. Others seem to be somewhere in the middle.

Survival statistics do exist and doctors do use them to help estimate a patient’s chance of recovery and determine treatment options. Although statistics can provide an estimate of survival, they are based on large groups of patients and cannot tell an individual person exactly how long he or she will live after a cancer diagnosis. And yes, they are likely from five years ago.

Any doctor, in my opinion, who says they have no statistics is not being honest and has made a personal decision to withhold this information from their patients.  I find that a disservice to individuals with cancer. My husband’s doctor did discuss his prognosis only when he ask and then he defined that some folks obviously had lived shorter and some lived longer that the stats.

Seems to me that one should be allowed to know their risks so that they may plan their treatments and life accordingly. If I had a cancer diagnosis, I would absolutely consider it my right to know everything about my condition, treatment options, and odds of survival.  I do not want to hide from general statistics or have a doctor make a choice to withhold information from me. How can one make personal choices about their treatment if they do not understand the odds of whether they will survive their cancer?  Optimism is one thing … but, continuing toxic treatments with no hope of survival … well, I just do not wish that on anyone.

Your brother is lucky to have you as an advocate.

Peace. ~ Cynthia 

 

 

 

UncleBuddy

devotion10 said:

Lin …. Your brother’s questions are insightful.

Prognostic factors vary so much with recurrent cancer. Think about it … so very many variables … the general health of the individual prior to their diagnosis, co-mormid conditions, whether they had surgery and chemo or chemo alone when first diagnosed, how old they are, the length of time between initial diagnosis and reoccurrence, the stage and grading of the original tumor/s, whether they are chemo-naïve at the time of reoccurrence, side-effects or complications of initial treatment, weight loss, response to treatment after reoccurrence …

Some folks seem to like to know their odds; they read the information, accept that it may not apply to them and move on.  Other run from the statistics and down play any relevance to their situation. Others seem to be somewhere in the middle.

Survival statistics do exist and doctors do use them to help estimate a patient’s chance of recovery and determine treatment options. Although statistics can provide an estimate of survival, they are based on large groups of patients and cannot tell an individual person exactly how long he or she will live after a cancer diagnosis. And yes, they are likely from five years ago.

Any doctor, in my opinion, who says they have no statistics is not being honest and has made a personal decision to withhold this information from their patients.  I find that a disservice to individuals with cancer. My husband’s doctor did discuss his prognosis only when he ask and then he defined that some folks obviously had lived shorter and some lived longer that the stats.

Seems to me that one should be allowed to know their risks so that they may plan their treatments and life accordingly. If I had a cancer diagnosis, I would absolutely consider it my right to know everything about my condition, treatment options, and odds of survival.  I do not want to hide from general statistics or have a doctor make a choice to withhold information from me. How can one make personal choices about their treatment if they do not understand the odds of whether they will survive their cancer?  Optimism is one thing … but, continuing toxic treatments with no hope of survival … well, I just do not wish that on anyone.

Your brother is lucky to have you as an advocate.

Peace. ~ Cynthia 

 

 

 

Thanks Cynthia!

Thank you Cynthia for your kind words.

I don't want to give anyone the impression that my brother's doctor didn't explain things to us. She has been very honest and thorough, but to be honest, when you're asking questions, you sometimes hear some of what the doctor says and forget other things. He has had so many things going on. I have learned to bring a pen and paper with me, it helps. Since all his complications, we have had other things on our mind. It was just recently that he asked me this question and I didn't know how to answer it. I was going to ask her when we went for his next treatment, since he decided to continue fighting. 

His doctor has told us that every person is different because of the different variables that they bring to the table. She felt that WITHOUT chemo, he may have a year to a year and a half. She said it's a lot harder to say how long he'd have WITH chemo because everyone responds differently to chemo and there are different treatments to try. She feels it will give him a few more years than going without chemo. She told us she has seen a 15% 5 year survival rate because of the new chemo drugs, but she also said my brother is young, so he could surpass that. She actually explained a lot of what you said, his past cancer back in 2000, his treatment then which consisted of chemo and radiation, his surgeries, etc....would all have to be factored into the equation. She doesn't sugar coat anything, but she is very upbeat and wants him to concentrate more on keeping healthy.

It was a great questions. He really surprises me sometimes. It shows that he was really paying attention. Unfortunately, when it comes to other things, his head is in the clouds. He never told us he was having difficulty breathing, so in November he had to have emergency surgery to removed clots to the lungs. Again he didn't tell us he was having trouble breathing and walking, that was in December, he has to have surgery to remove fluid from around the heart. Just recently he didn't tell anyone that he developed a rash on his stomach. All these things delayed his treatment. I spoke to him and my dad and we decided that they need to move closer to me so I can keep a better watch over them. He would also be closer to his doctors and a hospital. I'm looking into that now.

Thanks for your support.

Lin

NJC

The only statistic that's a

The only statistic that's a certainty is we're 100% going to die at some point in our lives. Some will die sooner than others and vise versa. Statistics say a healthy man/woman should live to 80 but yet they die tragically in an auto accident, etc. Or, the stats say one with Stage IV cancer is only going to "live" 2 years and they live for 10+ or become NED and live until old age. Statistics are so full of variables from age, type of cancer, treatment protocol, po-dunk community hospital to NCI teaching center, one's biology, one's cancer biology, etc. There is NO one size fits all, so why people continually try and force themselves into a number is beyond me.

Point being is that I see so many people get caught-up in the "statistics" and forget about living. To waste one's remaing days, according to some arbitrary number is foolish since no one ever knows what one's life expectency truly is...  

 

 

UncleBuddy

NJC said:

The only statistic that's a

The only statistic that's a certainty is we're 100% going to die at some point in our lives. Some will die sooner than others and vise versa. Statistics say a healthy man/woman should live to 80 but yet they die tragically in an auto accident, etc. Or, the stats say one with Stage IV cancer is only going to "live" 2 years and they live for 10+ or become NED and live until old age. Statistics are so full of variables from age, type of cancer, treatment protocol, po-dunk community hospital to NCI teaching center, one's biology, one's cancer biology, etc. There is NO one size fits all, so why people continually try and force themselves into a number is beyond me.

Point being is that I see so many people get caught-up in the "statistics" and forget about living. To waste one's remaing days, according to some arbitrary number is foolish since no one ever knows what one's life expectency truly is...  

 

 

True,

my comment to my brother was that none of us have an expiration date on the bottom of our foot. We don't know when our time is up. My intellectually disabled brother put this question together, so I thought I'd post it for him. I'm proud of him that he was able to think up this question. As I told him, there are too many things to analyze in order to figure it out. I told him to keep his head up, enjoy each day as it comes and keep looking to the future.

Lin

NJC

Lin,
I wasn't referencing my

Lin,

I wasn't referencing my comments directly towards your brother, rather, mentioning them in general. It's all "you" can do is live everyday as it's your last because whether healthy or sick, no one knows what tomorrow holds.

However, that's not to say we didn't get lost in the statistics early on, because we did. However, we made a conscious decision to realize really early that life isn't fair and that all you can do is play the head that's dealt as best as you can. It's sad that you really don't realize the gravity of that statement until "you" or a loved on are hit with a late stage diagnosis. So, I try to give back what we've learned in the last 3.5y regarding statistics from a patient's POV, which are essentially useless in the scheme of life.

 

UncleBuddy

NJC said:

Lin,
I wasn't referencing my

Lin,

I wasn't referencing my comments directly towards your brother, rather, mentioning them in general. It's all "you" can do is live everyday as it's your last because whether healthy or sick, no one knows what tomorrow holds.

However, that's not to say we didn't get lost in the statistics early on, because we did. However, we made a conscious decision to realize really early that life isn't fair and that all you can do is play the head that's dealt as best as you can. It's sad that you really don't realize the gravity of that statement until "you" or a loved on are hit with a late stage diagnosis. So, I try to give back what we've learned in the last 3.5y regarding statistics from a patient's POV, which are essentially useless in the scheme of life.

 

NJC

It's true, sometimes it's hard not to get lost in the statistics. My brother has been trying to figure out whether to continue chemo or stop. He's had several hospitalizations with blood clots in the lungs, fluid around the heart, rapid heartbeat, etc. so he was trying to weigh his options. We can't make that decision for him but can help him understand what he's facing. His oncologist has been very patient with him and has explained things as best she can. 

The stats are useless because they don't take into effect young people like my brother and so many other young people on here. I agree. we don't know what tomorrow holds so it's best to live as if everyday is your last.

Lin

devotion10

UncleBuddy said:

NJC

It's true, sometimes it's hard not to get lost in the statistics. My brother has been trying to figure out whether to continue chemo or stop. He's had several hospitalizations with blood clots in the lungs, fluid around the heart, rapid heartbeat, etc. so he was trying to weigh his options. We can't make that decision for him but can help him understand what he's facing. His oncologist has been very patient with him and has explained things as best she can. 

The stats are useless because they don't take into effect young people like my brother and so many other young people on here. I agree. we don't know what tomorrow holds so it's best to live as if everyday is your last.

Lin

Lin ~ This is for your brother ...

Peace. ~ Cynthia

PatchAdams

10 years

My onc told me after a recurrence/ met that the clock starts again and it's 10 years with no evidence of disease before they would consider using the word cured. 

fatbob2010

Starts Over

I had the same experience that Patch did with my Onc.

UncleBuddy

Thanks everyone!

I still have hope for him and will fight right alongside him. 

Lin