Thursday, October 16, 2014


Five years.  That whole celebratory FIVE year survival thing.  It's a pretty big deal.  Until it's not.  Thus, another #FACTober.

I just read a piece on Healthline written by Judy Salerno.  That would be Doctor Judith Salerno, graduate of Harvard Medical School and the current CEO of Komen.  I was hopeful when I met Nancy Brinker last November.  I thought the conversation was going to change.  I was hopeful to see a science person at the helm of Komen.  I thought the conversation was going to change.

I know I'm not happy about the fracking bits being painted pink to raise awareness.  I'm definitely not happy about the hoopla that is expected during an upcoming NFL game when Nancy Brinker will accept a check from a company that engages in fracking.  Need a little more understanding about the whole fracking thing?  Breast Cancer Action's Stop Fracking With Our Health campaign provides the foundation and the background.

I've tried to stay on the sidelines and let the others raise their voices over the pink hypocrisy.  Lori's recent post complete with the catchy tune and video?  Great stuff, a singing mammogram!  After all, who wouldn't want a doo-wop reminder?  The well-intentioned but unaware and misguided individual who decided it would be a good idea to choose October 13, Metastatic Breast Cancer Awareness Day as the day to pull a "No Bra Day" awareness campaign.  Another winning moment.

I've been sick most of this month.  Not pink fatigue but sick.  With some sort of real illness which appears to be a side effect of a medication (more on that in an upcoming post).  What began as a fever of 102 has slowly crept to the 100 range, and no, I haven't been to Texas or in Africa (and yes, I've been asked, several times).  Maybe it's just as well I've been down for the count since September 26th.  Otherwise, I'm sure there would have been a rant a day in this space.  There's no shortage of hyperbole, hype, headlines and pink nonsense.  I glance as my social media channels.  I jump in when I can.  I see what's going on.

My goal, before getting sick?  I decided I was going to stick with #FACTober.  I wasn't going to isolate anyone by criticizing but in the same vein, I can not, WILL not, sit on the sidelines when a statement like this is pulled out of an article to be highlighted and tweetable.

Five year survival rates?  Seriously??  This is such a misleading statement.  Is it true?  I'm sure in some set of statistics this can be shown to be an accurate statement.  Let's look beyond the statement. Shall we?

I have a few questions.  First, define "early stage."  Stage 0 and Stage I?  Since the American Cancer Society lists the five year survival for Stage 0 and Stage 1 at 100%, I'll go out on a limb here and presume at least some Stage II cancer subtypes were included.

So what's the problem.  For starters, my mom.  She survived both of her early stage cancers beyond the five year mark.  She is presently in treatment, which will continue for the rest of her life, because her cancer metastasized.  Yes, she would be included in that number.  Even if she metastasized a week after diagnosis and was alive at the five year mark, she would be included in that number.  I'm pretty sure my mom is counted twice, which, in my world, is like adding insult to injury.

(Allow me to interrupt myself.  My mom is doing quite well.  She is still on her first line treatment and her bones are looking good.  Stable.  No progression.  Some numbers slightly up, others down.  All in all, doing well.  But, make no mistake about it, she is in the oncologist's office every month for treatment and is in some sort of scan machine every three months.  And yes, we both suffer from scanxiety.  It only creates a bit of emotional havoc four times a year, scan weeks.  That aside, she's quite a social butterfly and I am beyond grateful.  End of sidebar.)

Returning from that slight detour, off the top of my head, I can probably name a dozen people, in a millisecond, who are beyond that five year mark, living with metastatic disease.  The way that is highlighted, it misleads.  Those who don't dig beyond the sound bite might be inclined to think along these lines:

"I got past the 5 year mark, I'm pretty much guaranteed I'm done with breast cancer."

And yet, nothing could be further from the truth.  That sentence is a whole lot of fluff, propped up in pink to sell a bill of goods.

Five years guarantees nothing.  Recurrences can happen years, even decades later.  It seems the studies are beginning to show ER+ cancers tend to recur after the magic five year mark.  And for the record, the majority of breast cancers diagnosed are ER+.  According to the information I've dug up, approximately 80% are ER+.  That's pretty much the lion's share of the diagnoses.

Let's expand further.  Those who are diagnosed at Stage IV are the only ones who are counted when you see numbers regarding stages.  If you metastasize after a Stage 1 diagnosis, you are in some sort of no man's land.  Still considered a stage 1 "survivor," one of the biggest gripes within the metastatic community is that they are not being properly counted.  I concur.

As for those of us diagnosed with early stage disease, did you read my One In Eight post where I had people of different generations seated around an imaginary table?  Here's another imaginary table.  Seat three non-metastatic breast cancer patients at a table.  Doesn't matter their age or their stage of disease.  Doesn't matter if they are months beyond initial treatment or if decades have passed.  Let's imagine we are at one of those bistro tables and we are patients diagnosed stage 0, stage 1, stage 3.  Take a look around.  One of you will metastasize.

The way I see it?

Apparently, we are OVERESTIMATING our risk of getting breast cancer.

Most disturbing?

Apparently, we are UNDERESTIMATING what can and does happen once we actually GET breast cancer.

I've taken a highly complex matter and really dumbed it down (primarily because I don't have the brain to write--remember that fever thing I mentioned earlier.....).  But yes, based upon the best numbers available which is some sort of crazy calculation using deaths vs. diagnoses and who knows what else,  we know that up to 30% can and do metastasize.  Stage doesn't matter nor does the time from the diagnosis.  Said another way, a Stage 0 patient diagnosed in 1994 can be diagnosed with metastatic disease TODAY.  It's all about biology.

That's a pretty hefty number.  It's high time we began to keep information on those who do metastasize.  It's high time the information about metastasis is incorporated into every bullshit awareness campaign.  This, however, is an inconvenient truth and it's one that distracts us from the real purpose of October.  A pink party.  Instead of trying to educate about the lack of any significant dent in the number of deaths from the disease in FORTY YEARS, Go Pink.

For the love of I don't know what, we are in the data revolution age and we can't have a data-set that requires all health care providers input some very basic information to get a really clear picture.  The answers lie in the data.  The data tells a story. There may be threads for an astute researcher to pick through or there may be obvious, glaring groups that emerge.  How about this for a start?

  • Age and stage at diagnosis
  • ER/PR/HER status at diagnosis
  • Site(s) of metastasis
  • ER/PR/HER status of metastatic tumor (if possible to obtain)

In this age of Big Data, I have to believe some valuable information might emerge.  We don't need to start with big, lofty goals, just get the basics and build upon that.

As for being alive at the five year mark?  Not really so impressed with that.  In fact, it's rather disturbing when put in proper context.

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  1. Yep. Hard to get some to understand that this "magical five year mark" means absolutely NOTHING in breastcancerland. Excellent post!

  2. first, AM, I am so sorry you have not been well these last several weeks. I hope you can manage some time to yourself, to have all the comforts that make you feel better and ease the misery. then I want to tell your sweet mom that I am happy she is doing so well, and I send her my wishes for continuing the trend. I send you both loads of warm and gentle hugs.

    AM, I cannot believe the strength and determination you have exerted to do this amazing, excellent post. it is and has always been unfathomable that there is no US central data collection base ; WTF? it seems unconscionable, ludicrous and just plain stupid. when I was a hospice nurse for nearly 30 years, I was shocked at the number of persons affected with cancer, many the same type of cancer, located in small geographical clusters. this is quite typical all across the nation, and widely known by public health officials, clinicians, and in many cases, the patients themselves, but not always. the things we keep track of - the number of followers on twitter, how many "likes" posted on Facebook; the numbers we crunch for celebs divorces, marriages, affairs; we can put men on the moon, and track hurricanes, and get sight of most every scrap of earth from that Google thingamajig (damned chemobrain!). but in these United States of America we do not collect the most basic demographics on one of the most deadly, costly. destructive forces of nature - cancer -all cancer- breast cancer and metastatic breast cancer. what opportunity we ever had that was not seized and studied could by now have been destroyed - clusters at some point could die out and not recur - and we can never get it back. what is WRONG with us? it makes me want to scream. and don't let anyone yap about how much it would cost to collect such vital information because it could never exceed the cost of treating cancer IMO, and those opinions of others who have tried and failed to initiate even the most elementary collection of data. you are so right - answers are in the data, the data tells a story. as medical history is written from the beginning to our current time in the 21 century, the failure of cancer data collection will be one of the most glaringly neglectful, and shameful stories. we can only hope that the realization of what could have been will morph into what can be achieved, right now, right here.

  3. I never could understand the "five year mark" because most cancer patients are still alive five years after diagnosis, unless they are diagnosed with metastasized cancer right from the start. I had a co-worker die from MBC. She was alive at her "five year mark" but was being treated for MBC. I have a friend who is end-stage MBC. She, too, was alive at her "five year mark." When I was diagnosed with TNBC I was given a 15 year mark. (Yes, fifteen years).

    Once again, you've written an excellent piece and said what I would say. I guess I can give up writing and just spend my days sharing your posts. I hope you feel better soon. Hugs.

  4. This is a huge example of where patients should be involved in setting the research questions. It's so far from patient-centered aims that you wonder if the term has completely passed them by.
    Just yesterday I was talking to a doctor about disease organizations and my feeling that they don't represent real patients at all. They want to ensure their future existence through fundraising and fund research as chosen by them. This was not breast cancer we were discussing but I think the organizations are mostly the same.
    I hope you start to feel better.

  5. I do not have cancer, but have a friend who does. The statement that most shocked me when I delved into this world via my dear friend is:
    "You are considered a cancer SURVIVOR on the day of your initial diagnosis."
    Talk about skewing statistics! Unbelievable.
    The Cancer Society makes money hand over fist and has done so for 60 years. How on earth is it possible there is no cure? Or any other protocol except chemo & radiation?????


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