ALIVE AT FIVE YEARS..... AND YOUR POINT IS????

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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