Tuesday, July 21, 2015

Cite Your Sources!

Does my title bring back horrible memories of high school, when the teacher wrote "cite your sources" in big red pen on your page?

Well, he or she was right.

I saw this graphic on my facebook timeline.  I sighed.

It's getting worse.


First of all, the commonly used (and incorrect) statistic is 30%.  As in, 30% of women with early stage cancer will eventually have a metastatic relapse.  Although I suck at math, I did produce a child who is majoring in math at Caltech, and I don't think 30% is the same as 1 in 3.  So this number is getting worse as time goes by.

This bugs me because I understand how these things happen - somebody makes a mistake and it makes the rounds online and once it does - it never goes away.  Ever.

I'm still getting the Neiman Marcus Cookie Recipe meme first seen in the 1990s.

So what's the mistake, you ask?  You've seen this number everywhere and believe it's true.   For a while, I believed it too, so I don't blame you.  But I decided to look a bit further, and after doing a lot of research and listening to people who are smarter than me, I've come to believe this 30% number is false.

If not false, at least there are no legitimate sources that back it up.

So where did it come from?

It comes from the MBC Network which a lot of us rely on to get our stats, and which is considered a legitimate source by publications across the globe.

The MBC network is honest and they cited a source for their statistic.   I'm sure they used it with good intentions, but it's wrong and has been (mis)used so often people now take it as gospel.

First, the citation is from a CME test written by a Dr. O’Shaughnessy in 2005.    For those of you who don't know what a CME test is - it stands for Continuing Medical Education.  Doctors must keep up to date with their field, and so they take these Continuing Medical Education tests for credits. (I take them for fun too, and I pass more than I fail, which tells you how easy they are.)  They read a paper, answer some questions and get a credit.

This oft-cited test had a throwaway line in it that said,

"Despite advances in the treatment of breast cancer, approximately 30% of women initially diagnosed with earlier stages of breast cancer eventually develop recurrent advanced or metastatic disease."

That line has no citation with it.  Nobody knows where it comes from or where she got that number. She could have totally made it up.   A friend of mine had written her to find out, with no response.    I have not been able to find anything that confirms it, and I have looked extensively.

But if you read it carefully, it doesn't even say that 30% of women will have a metastatic relapse.  It says approximately 30% will develop recurrent advanced or metastatic disease.

Where is the punctuation?  Should it read "recurrent, advanced, or metastatic disease?"  Breast cancer can recur without being metastatic - women can have another incidence of local breast cancer.  Or they can have a relapse of locally advanced cancer, which means in the lymph nodes, but not necessarily a metastatic relapse.  (Metastatic is the Stage 4, bones and organs lethal disease we all know and love.) So did she mean 30% of all early stage women will have some sort of brush with cancer again, including metastatic cancer?  Then what is the percentage who will have a 2nd cancer with no mets?  Looked at that way, that 30% number goes down for metsters.

Who knows what she meant?  It's a badly written sentence and more important, she didn't back that number up with any study or anything.  It was a leadup to make a point, and she never expected that to be quoted and cited and used everywhere. (I hope.)

Anyway, that sentence had nothing to do with the reason she wrote the test.  It wasn't important and shouldn't have been cited by the Metastatic Breast Cancer Network since it had no citation or study behind it. (I have asked them to take another look.)  Plus, it was written in 2005, and while I don't know the numbers, I think medications like Herceptin and Perjeta are going to prevent some relapses and change some numbers.  So if nothing else, it's a bit old.  Still, that 30% number is prevalent everywhere, and I have heard oncologists such as Eric Winer dispute and qualify that number.

So what is the real number?

That is THE question. And I don't think there is an answer for it because I don't think any agency tracks relapse rates purely in this manner.  I don't think there is a motive to track this and keep these numbers.

If you lump all breast cancer patients together - if you have a 70 year old woman with Stage 1a, ER+ cancer, and a woman with Stage 3c Triple Neg who is age 25, and a woman who is 65 with Stage 2 HER2+ cancer - if you put them all in a bag and shake it out, you can come up with some metastatic relapse percentage (not 1/3, I'm positive).   But in what time frame do they relapse? 3 years? 5 years? 20 years? How do you get data like this? Who is tracking this in this fashion?  

Nobody, to my knowledge.   Government agencies  know how many women are diagnosed with breast cancer each year, and they know how many die of metastatic breast cancer each year.  Drug companies and research institutions do tests on treatments and track that.  There are survival statistics by stage, by subtype, histology,  etc, based on research and studies.  But do they lump it all together to make a generalized percentage of all women with BC who relapse over the course of their lives?

If so, how?   What are the methods? Some women live 15 years, some 3. Some are survivors of 14 years who have a late metastatic relapse.  Some are like me and had a relapse within 2 years.  How would they factor into any tracking?   A woman diagnosed Stage 4 from the start is easy to track but what about those of us who started out early stage?  When I die, metastatic breast cancer will be put on my death certificate but until that day, I don't think anybody is interested in the fact that I relapsed.

Think about it - to get to that number, the government would have to take all the women diagnosed with breast cancer say, in 1990.  That would be your study population. Fast forward to 2015.  How many of those women relapsed?  How many died?  How long did they live? Then you could kind of extrapolate that out to get the yearly number.  But as far as I can tell, it's not done that way and of course, treatments have changed over the past decades.

I might be wrong and I would love it if somebody could give me an accurate picture of this and a couple of sources (that are cited).    But to my knowledge, this overall stat doesn't exist and that throwaway line in a test was a guess.

Another way to look at it:  if 250,000 women per year are diagnosed with early stage invasive breast cancer  (which isn't the case) and 40,000 women die of metastatic breast cancer every year (another fluctuating number) then you can say generally that maybe a little over a sixth of women will relapse.  (That is not 60% either!) But that's pretty flaky as some of those 40,000 were diagnosed Stage 4 from the start and there are a million variables that I haven't thought of because...?  You guessed it.  I suck at math.

The real truth?  None of this matters for an individual.  You will relapse or you won't.  And it's more likely if you have a later stage, a more dangerous histology, if you aren't a chemo responder, etc.  But it's not a certainty.  I have a friend with 3c breast cancer, diagnosed at 22.  She is healthy and cancer free today, at age 30.  Me, Stage 2a diagnosed at 51, I am the metster.  You just don't know.

As human beings, we want concrete answers. Those of us further along the line of metastatic cancer come to realize that stats are not important.  Sure, at first we try to squeeze ourselves into those boxes, as if they could foretell our future.  But we learn that they are for populations, not people. Stats say I should never have had a metastatic relapse.  Stats say that since I did, I should already be dead.  It is human nature to want to apply those numbers to us. That isn't the way it works though.

I don't think it helps our cause as advocates for women with metastatic cancer to repeat misinformation.  I also think that certain groups (K*ough*omen) deliberately misuse statistics for their own purposes, stats that were never meant to be used the way they are and which are now misunderstood by everybody.  To me, these groups look foolish.

Do we -  as metastatic advocates and patients - want to join them?

I don't.  I think it is powerful enough to say 40,000 women a year die of metastatic cancer, without having to pretend 1/3 of the women with early stage breast cancer will be one of them.

Most people have no understanding of statistical analysis and why it's done. So these kinds of misunderstandings happen, even to me as like I said - math is hard.  But I think it's harmful to misstate things, use scare tactics and otherwise try to make a bad thing worse.

Trust me, it's already bad enough.

Bottom line:  Don't believe everything you read online, even from me.  And don't forget - check your sources!

Saturday, July 11, 2015

Just little stuff because my brain won't function

I've been working on a post for about a month now.  I cannot for the life of me get what I want to say out of my head and through my fingers.  I don't think I can even blame that on chemo brain, as much as I'd like to.  Just sort of this blah, I can't write feeling.

So to let you know I'm still alive and kicking, I'll update you with some news:

1.  I have a book in the process of being published!  (And I don't have to write it!)

I know, I know.  I always said I wouldn't turn this blog into a book.  I wrote it as a blog and it was intended to stay a blog.  Plus everybody and their mother (and husband) who has breast cancer turns it into a book, and I figured I didn't need to add my voice to the noise.  But you people kept asking me to do it, and every once in a while I would say, "Hey, maybe they are right and I can turn this into a book" and I'd sit down and try... but just starting the story fresh.....I guess I didn't want to relive it.

Would you?

I can't even write a post these days much less change my whole life into a readable book.

But one day, a real live publisher came across this blog and made the offer. It seems that she will go through the entire blog, turn it into a viable book, get copy editors, illustrators for the cover and do everything. All I do is approve it at the end.

And then reap in the millions that every author gets, and live the swank life I always knew I should.

Okay, you know me, I'm nothing if not realistic.

My goal is to sell 5,000 copies.  It is a standard publishing contract, which maybe you don't know, means I get a measly 10% of the proceeds. So no trips to the Greek Islands for me.   Don't shake your finger at me, I know I'd have gotten a lot more in cash if I could have done it myself ... but I couldn't. Cash has never been the point anyway.  Plus, there is a certain cachet to having a book published by a real publisher.   And you never know, maybe I'll reach a new audience and help somebody understand that metastatic cancer doesn't mean swift death.

So look for Breast Cancer, But Doctor, I Hate Pink in your neighborhood bookstore about September 2016.

More news:

I am hosting a GoFundMe to help a friend of mine.  You may not know this, but when you are diagnosed with terminal cancer, many people start backing out of your life.  They don't know what to do or say, they want to protect themselves from pain.  My own brother has not spoken to me since my diagnosis.  We buried my parents two days ago and he didn't show up - to his own parents memorial service!   Other friends dropped away, but a few came closer.  Some started writing and keeping in touch when I'd been gone from their lives for years, which was heartwarming to see.  When people say that they learn who their friends are after a cancer diagnosis - they really mean it.

My son's science teacher and former coworker starting bringing over food, and checking in with me.  We'd chat, and eventually became real friends. (The secret to being friends with your child's teachers is an art - you can never bring school into it, and I didn't.  Just like he wouldn't tell  me how to parent, I wouldn't tell him how to teach.)

He has given a lot to me personally, and the community I live in.  If you read the GoFundME link (please do) you will see.   He's like my real brother.

Sadly, his dog has been diagnosed with cancer, and I want to help him pay for it.  He is wavering about it and I don't want money to be the deciding issue.  He loves dogs more than anybody I've ever seen and I want him to have this one worry taken off his hands.  And I want appreciation for a teacher who has been silently dedicated for students for years to be shown publicly.  So if you have $1.00, or $500 to spare, please pay it forward.   He represents all caring, dedicated teachers who want the best for their kids.  Let's surprise him.

Last piece of news:   because I'm in this weird half space where I'm healthy enough to do regular things but don't feel well enough to always enjoy it, I'm trying to come up with some sort of life and system. I am too healthy to sleep all day but too sick to go jogging.   I don't have physical energy or strength, even after the exercise class I took.  I was much improved and still am, my balance is back and some of my core strength -  but it still hurts to stand up too long and eating is still a big problem, I am finding quiet things to occupy my time.

Because, like with the GoFundMe above, I am big in giving back, I will send Cards on December 1st to any reader who wants one.  I am documenting the cards in the Card a Day Project.  I am not good at making cards (and worse and taking pictures of them) but you can see my improvement.  And in mid-November, I'll be taking names and addresses of everybody who wants a card from me, and you will get one.  It may not be beautiful, it may not be Christmas-themed, and it may not be art, but it will be made with love (and sticky fingers).

If you haven't, sign up for my newsletter,  I will update you first about the book.  Also, sign up and like my facebook page, where I post news that happen in the world of cancer, things I find funny, and updates on my life.  And, please don't forget to start your Amazon shopping from my page.  That affiliate money is the only money I make from my blog and it goes to buy the scrapbooking supplies I use in my cards.