Friday, August 15, 2014


The Thunderclap...............

On Monday, I had the privilege of joining a few advocates at a meeting in NYC.  We were brought together by a pharmaceutical company to talk.  We were not paid or enticed with gifts of any kind.  That's important because Big Pharma is highly regulated.  They are also vilified by many.  I would not be one of the many.  A story for another day.  This is about Monday and a roundtable conversation that brought more social media friends into my 3D world.

What a thrill to meet, to have a thoughtful discussion and to do a bit of brainstorming with Nicole McLean (My Fabulous Boobies), Katherine O'Brien (IHateBreastCancer), Tami Boehmer (Miracle Survivors) and Amy Lessack (Living Beyond Breast Cancer) with a team from Novartis Oncology.

The topic?  Advanced breast cancer.  Since my diagnosis in 2006, I've learned much.  When I began writing this blog in 2011, I've learned much more.  Exponentially more.  Mostly, I've learned that we may have come far but we still have so far to go.

Part of our conversation was looking for as many ways as possible to make an impact on during October.  Here's one way those of us who are on twitter can create a real twit storm.  Join the Thunderclap.  What's that?  Click the link below, customize the tweet or use the prepared one.  On October 13, the day we traditionally reserve to highlight metastatic disease, every person who signed up will have their tweets automatically sent out at the exact same time.  I signed up as soon as I saw the campaign.

Social media is a powerful tool.  Twitter can amplify a message if enough people are rallying around a hashtag.  #advancedBC is the hashtag for this shout out.  Using the platform provided by thunderclap so that every tweet hits twitter at the exact same moment will make for one powerful moment.  I know many of you have twitter accounts, I'd like to see that number surpass 100 in a matter of hours.  Can we do it?  I think so.

This will work with Facebook, too.  In other words, no excuses.  Click and join.  It's long past the time we should seize October and use what's already going to happen anyway.  Let's take advantage and make a focused and targeted effort to educate, to share the truths surrounding metastatic disease and advanced breast cancer.

Need some facts?  Read the piece below the graphic which is a reprint of something I wrote many months ago.  Share a fact.  Any fact.  (Hint: it may be best to finish reading the second half of this post before making some thunder.  Clicking will take you to another site.  It won't open in a new window.)

...........................And the facts

I wrote this post about 14 months ago.  Both sobering and a wake up call are the comments under the original post.  Two of those comments were left by women who have since been stolen from us by this disease.  Lives cut short, families shattered, hearts broken.  Since the beginning of this year, too many are gone.  I know statistically this year is no different than the past several years, but this year has been especially painful on such a deeply personal level.

I'm determined.  I will not let any life be forgotten.  Nor will I let these facts be buried.  Make no mistake about it, breast cancer is NOT the great success story we are being fed.  Somehow, the effective marketing of a disease has allowed for the obfuscation of this supposed success.

I'm not a scientist.  I'm not a doctor.  I am a bit of a detective which seems to come in handy when reading press releases, deciphering headlines and looking beyond the statistics.

Fact:  Breast cancer is not one disease.

Fact:  There are many different types of breast cancer.  Ductal, the most common, accounts for approximately 80% of all breast cancers.

Fact:  The most common in the other 20% would be inflammatory, for which mammography is useless as there is no lump and is mostly "rash-like" and lobular which is also a bit tricky with imaging.  Lobular is the sneaky cancer.

Fact:  Now that research is on the molecular level, further subtypes can be defined based upon hormone receptors and specific proteins. ER/PR/HER neu status aren't really types of breast cancer but rather, a means of better understanding the characteristics of a cancer type.  Having the ability to identify these receptors allows for more targeted treatments.  Ductal cancer can be triple negative or HER positive.  Lobular cancer is tested for the same receptors.

Fact:  Metastatic breast cancer is NOT a type of cancer.  It's a stage.  The last stage to be precise.

Fact:  DCIS is NOT a type of cancer either.  It's also a stage.  Technically, it's stage zero because it's still confined to the duct.  A more accurate stage would be "Stage ?" since there is no way of knowing which DCIS lesions will become invasive and which ones will go away without any intervention.

Fact:  Metastatic means the cancer has spread beyond the cancer site to another part of the body.  Thus, most or all cancers (lung, colon, prostate, melanoma etc etc etc) have the potential to become metastatic. If breast cancer spreads to the lung, it's NOT lung cancer.  It's still breast cancer that has now taken up residence in the lung.  If lung cancer spreads to the brain, it's NOT brain cancer.  It's still lung cancer that has now found a spot in the brain.

Fact That Bears Repeating:

Metastatic Breast Cancer is not a TYPE of cancer.

Any type of breast cancer with any molecular signature can metastasize.  Some breast cancers are more likely to metastasize because they are more aggressive.  In plenty of cases, a metastasis is a crapshoot.  Off the top of my head and in less than a millisecond, I can think of five people who developed what might be considered an unexpected metastasis.  If I allow myself a full minute, I'm sure I could come up with a list that is far too long.

Since any type or subtype of breast cancer can and does metastasize, those of us who are staunch advocates for those who have metastatic disease are not advocating for a particular group.  We are advocating for all.  Any one of us has the potential to develop a distant metastasis.

To be chastised or to be accused of selecting a particular group of patients over another is off the mark. Metastatic patients are patients whose disease fits into any type or category.  They can be ductal or lobular, inflammatory or triple negative. They can be HER2 positive.  Or not.

In other words, it's not a type of disease, nor is it a population of patients with uniform diagnoses.  Their disease fits into every nook and cranny.  It's just that their needs are far more urgent than the needs of the rest of us.

It's high time we, as a community, address this urgency.

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  1. Thank you for this, my dear friend. I just signed up as well. Xox

    1. I love you, Lori. It's just that simple. xoxoxox


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