HOW TO BE AN ADVOCATE: STEP ONE

I'm not metastatic.  I'm not trying to reinvent the wheel.  I'm not trying to take anything away from anyone.

By the same token, I'm not going to play a game with words.  Or hidden meanings.  Or pretend agendas.

I SHOULD be heading for Washington DC for the Annual NBCC meeting.  I opted out.  The breast cancer community, quite possibly, is the most fragmented community on the planet.  Everyone is pushing their own agenda.  Instead of joining together which would make us a force to be reckoned with, a group of unstoppable advocates, there is lots of posturing, plenty of vying for position.  Who is the alpha dog in the pack?

NBCC has a record of getting things done.  At the AACR meeting, much was said of the breast cancer advocates.  Every big change was in large part due to the tenacity of the breast cancer advocates.  I walked into the world of advocacy where a solid foundation was already established.  I am grateful.  No group has had a more common sense approach than the National Breast Cancer Coalition.  It has always been a rollup your sleeves and prepare to dig in group.  

For now, I have chosen to take a step back.  I blogged about this as recently as this past Monday.  When I received an email on Tuesday to let me know NBCC is planning a social media campaign in honor of mother's day, I knew I wouldn't be participating.  I was asked to share a message about my mom.  Use twitter.  Post it to Facebook.  Put a badge on my blog.

My mom inspires me every single day.  My mom smoothed a path in 1987 so that my cancer treatment in 2006, albeit mostly identical, was still kinder and gentler than the barbaric treatment she endured.  My mom is my hero.  And, she has been written off by the NBCC in their 2013 agenda.  She is metastatic and there is NO PLACE in the NBCC for patients whose disease has already progressed to Stage IV.

I sent a tweet that said:

Just got email. NBCC wants my help w/ #MotherGood campaign? And yet, my #metastatic mom is not in their priorities for 2013. 

Late yesterday, I saw this reply:

Actually, understanding and preventing metastasis is a significant part of our #1 priority: (the link to the "significant part of #1 priority" was attached)

I replied:

Understand-prevent does not help my mom who was dx'd w/mets in Jan. it helps me. Respectfully disagree. Mets pts not counted.

And I stand by those words.  The only thing I could find in that priority that was remotely specific to metastatic disease was this:

A second Artemis Project on Metastasis will be launched this summer to focus on tumor dormancy.

To be clear, tumor dormancy is extremely important work.  But, there is a difference between understanding why a tumor awakens from dormancy as opposed to somehow getting an already metastasized, active tumor to retreat back to a dormant state.

In simple terms, it's far easier to figure out why the hell you woke up in the middle of the night.  Were you startled by a noise, bad dream, light peeking in.... hell, I've gotten up when the power goes out in the middle of the night because it's too quiet.  Once awakened, not so easy to get back to sleep..... And therein lies the rub.  That sentence with Metastasis, prominently spelled with an upper case M may look great but what is it really saying?  Just because you know why you got up, does this in ANY WAY help you get back to sleep.  Yeah, me either.

So, I stand by my position.  I support Dr. Susan Love Research Foundation and SHE isn't studying mets.  Her primary focus is on understanding why we develop cancer so it can, one day, be prevented.  I support METAvivor whose sole focus is on raising funds to award grants specific for metastatic disease.  It's okay for any organization to be one dimensional.  It is NOT okay for an advocacy organization to leave out a significant portion of their population.... and, at that, the portion that really needs the most support.  When we advocate, we advocate for ALL within our communities.

Ironically, one of the things that NBCC does to near perfection is train effective advocates.  Analyze the evidence, look at the data, speak for the entire community..... it's not about me, it's about bringing an educated patient voice to the table, a voice that represents the community for whom I advocate.  The whole community.

Please, no more carefully crafted words.  It's disingenuous and it's misleading.  If NBCC is supporting metastatic patients, the wording needs to be quick and clear:

Stop deaths in patients whose disease has already metastasized and research for effective treatments for this same group of patients.

I'm a broken record this week.  It's National Cancer Research Month.  It's time to raise the metastatic patients from the bottom rung of the ladder.  I'm not saying everything else should stop or that the lion's share belongs in Stage IV research, I'm just saying they shouldn't be written off as lost causes.