THUNDERCLAP AND FACTS ABOUT #advancedBC

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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REPLAY: THE TRUTH IN SMALL DOSES

This post appeared in this space one year ago, in August.  Just released in paperback, if you are still a paper reader and if you happened to miss Truth In Small Doses, it's a MUST read.  Two other items of note.  Creedmoria, the movie is now in post production.  Brooklyn based (and where I've been spending much of my time this year), I'm feeling a sense of camaraderie with everyone.  Also of note, I'm about one quarter finished with The Cancer Chronicles by George Johnson.  So far, loving that book, too and when I'm done, I will share my thoughts.

Previously posted on August 28, 2013

 At one of the science meetings I attended, a young researcher approached the podium. He was presenting findings. His opening statement said much. I'm paraphrasing.

"I have no financial disclosures to share. I wish I did."

The statement drew laughter from the audience. At the conclusion of many presentations, it may be announced that one or more of the study investigators has ties to the manufacturer of a compound that was part of the study protocol.  It's called transparency. 

In that same spirit, my impressions of The Truth In Small Doses are in no way impacted by the fact that I was sent a complimentary copy of the book by the publisher.  Thank you, Simon and Schuster.  Manners first.  I will say, before the offer was made, I pre-ordered the book for delivery to my iPad, my kindle, my iPhone and even my laptop. The devices know if I've read to a further page on a competing product so I'm not rereading (although, I've deliberately reread many passages to let the words settle into my brain).  It irritates me that my highlighted passages don't sync across all of the platforms. Maybe the developer can fix that?  Also, the kindle lets me tweet passages as I'm reading. That's pretty clever. Just throwin' it out there.....

Alas, a digression. 

Clifton Leaf has written a masterpiece. It is not for the faint of heart. And it's not an easy read for a chemobrain.  I think I've had enough exposure to the science at the meetings I've attended and in grant review panel discussions to grasp the importance of the information Mr. Leaf outlines in painstaking detail.

The details matter. Understanding how early research breakthroughs dramatically changed childhood leukemia from an automatic death sentence to a highly survivable cancer is the foundation for what follows in the latter chapters.  The mechanics of the research is an important facet of many points discussed throughout Truth In Small Doses.

Why are we stuck?  Why hasn't the research progressed in meaningful fashion? The operative word is meaningful.  The first chemo therapeutic agents are discussed. The cocktail that scrambled and rearranged my brain?  Yeah. All three medications were included in the first batch of effective chemotherapy drugs which were developed decades ago. I've bemoaned the lack of meaningful progress in a number of prior posts.

This is not to say that advances have not been made in the forty years since the infamous War On Cancer was declared. There have been plenty of success stories but plenty barely scratches the surface. We should have had far more success than we have to show for 40 years of research.  The recent discussion about the renaming of certain cancers to make them less scary, less ominous isn't the problem.  The real problem lies in the fact that we don't know nearly enough about the many diseases that are cancer.

Mr. Leaf has clearly done his homework.  He elucidates facts and figures.  He doesn't attempt to skew statistics.  Numbers don't lie.  The crude death rate, the number of deaths in women due to breast cancer has barely budged since 1970. Apologies to the men, I don't think you are being ignored, I just wonder how much statistical evidence was collected on male breast cancer in 1970.

In 2010, the number of women whose deaths were attributed to breast cancer?

26.1 for every 100,000 women.

In 1970?  It was 28.4 in the same 100,000 women.

Interestingly, that 28.4 number in 1970?  It rose over the next 20 years to 34 per 100,000 in 1990.  By the end of the century, in 2000, the rate at 29.2 was still higher than it was 30 years prior.

TECHNICALLY, where it counts most, saving lives, we actually digressed from 1970 through 2000.  The modest gain to 26.1 is only seen between 2000 and 2010.  No cancer has been more in the public eye than breast cancer.  On that, I'm sure we can all agree.  Death, I'm sure we can also agree, is the end point we are trying to avoid.  Yes, we will all die one day, but the fact that women are still dying of breast cancer without any real change in numbers is almost laughable.  Almost.  But not quite.  Actually, it's pathetic.  And before another digression ......

Outlining the process by which the bill now commonly referred to as Nixon's War On Cancer was crafted and then adjusted to suit the political climate, although not shocking, is an eye opener.  He discusses the peer review process at great length. Ditto the work required by scientists to prepare a proper grant proposal.  Scientists, Mr. Leaf contends (and I tend to concur) spend far too much time on the grant writing process rather than doing what they should be doing:  Research.

It's not necessarily additional funding that will drive us to truly innovative findings, but simply better management of the whole system.

I'm sure there are those who will pick at certain parts of the book trying to undermine the message.  I'm not an oncologist or a scientist.  I'm just someone who understands the basics and who is capable of applying simple logic when examining the need for change.

The shift is beginning.  We, as patients are more involved in our care.  Some of us participate to whatever extent we can, in the research process.  We understand evidence based medicine from snake oil.  We are getting impatient.  Rightfully so.

There is a series of stellar articles written by Alexander Nazaryan.  He profiled the book in an article for New Yorker.  The day of the release, he wrote about Truth yet again for the Atlantic Wire.  He included a great synopsis in a Books to Read This Summer piece in the same place.

In the New Yorker, many comparisons were drawn between Truth in Small Doses and The Emperor of All Maladies which was written by Dr. Siddhartha Mukherjee.  I had the pleasure of being in the audience as Dr. Mukherjee addressed a very large crowd at the annual AACR meeting.  Passionate and dedicated with an intelligence factor that is off any of MY charts, he was quite engaging.  Emperor and Truth are both important, they are simply written from different perspectives.

I will admit I took a bit of exception with the end of Mr. Nazaryan's article in the New Yorker .  I don't see Leaf as a frightened patient who yearns for a cure and Mukherjee as the sober oncologist concerned with getting the science right.  I don't see one book as a story and the other, an argument.

My only critique of those words lie in the fact it must be acknowledged that each author is looking at the problem through the prism of their own role within the paradigm.  Both parties belong at the table.  Each brings a wealth of experience and each can and will learn from the other.

The tone of Truth has a greater sense of urgency, as it should.  We must be insistent.  Incremental gains that are presently hailed as breakthroughs are not saving lives.  Our lack of the identification of  biomarkers that allow precancerous cells to progress forces many of us to make impossible choices.  WHEN will we finally get around to figuring out how to stop metastasis in its tracks.  Save lives.  The biggest reason cancer is a problem?  Simple.  Death.

Yes, drug toxicity and complications can play into the death of a cancer patient.  Hell.  That's precisely what happened to my dad.  Primarily and in most cases, however, cancer kills when it metastasizes.  In his 2004 article in Fortune Magazine, Clifton Leaf makes a number of brilliant statements regarding the paltry funding for research and our inability to stop a cancer from metastasizing.  That article is the basis for the book.

Everything about Truth In Small Doses screams Disruptive Innovation.  Sometimes, fresh eyes, ones that aren't inside the circle of familiarity, may see ways to disrupt the status quo so that real progress, meaningful progress, may be achieved. It's time for true collaboration.  It's time for partnerships.  It's time to be disruptive.

Clifton Leaf's prose is timely.

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BREAST CANCER TREATMENT-EQUAL PARTS ART AND SCIENCE

I have tremendous respect for both of these women.  They are quite accomplished, each a brilliant writer and both living with a breast cancer diagnosis or two.

Last week, Peggy Orenstein wrote an OpEd for the NY Times, The Wrong Approach to Breast Cancer and offered further elaboration on her personal blog which includes the link to the original article.  After Peggy's piece appeared, Elaine Schattner wrote a piece for Forbes.  It's Not Just About Survival: Why Some Breast Cancer Patients Opt For Surgery On Both Sides.

Because I refuse to purchase a subscription to the paper, I must admit I may have only read an abbreviated free version of the article.  I don't think that is going to make much of a difference.  My point is not to pick apart the article or to attempt to pull out phrases.

This is old news and I'm late to the conversation.  Yet, I'm compelled to write a commentary of my own.  There is no shortage of blogs and follow up articles after the OpEd appeared in the NYT.  I also understand from what was written by Karuna Jaggar, there was quite a discussion on Breast Cancer Action's Facebook page.  It's safe to say, this was one of those lightning rod things with Peggy Orenstein flying the kite with the key attached to it.

What do I think?  Do you even care?  I try to read in much the same way I hope I listen when others have something to say.  It's how I learn.  Here is my take-away.

Peggy Orenstein wrote a factual piece based upon the scientific evidence that applies to most of the population.  It seems clear, at least it does to me, that her message was this.  When someone is newly diagnosed, it is incumbent upon the medical community and those of us who fancy ourselves as some sort of a voice within our community, to make sure a woman is making a decision with accurate information.

And yes, that was my entire take away from her article.

Our doctors have an obligation.  Those who have big voices have a responsibility.  It's up to all of us to start the conversation by sharing: Here's the evidence, backed by a ton of science.  Sift through it.  Do lots of talking, reflect, think about every aspect and then, and ONLY THEN, make your best decision based upon the information available at the time.

We are all different and what works for one of us may not be the right choice for another.  I did not read Peggy's article as a dig at those who chose to remove a healthy breast.  I did not read Elaine's article as a dig at Peggy.  There are intangibles and there are other things to take into consideration when making such a drastic choice.  I made that drastic choice in 2006.

It was the most difficult personal decision I have ever made.  EVER.  Bar None.  Among some of the things that went through my head?  My mom's diagnosis in her 40's.  My own inconclusive BRCA results, not once, but twice, same test.  Yes, BRCA1 and BRCA2 both returned variants of unknown significance in what I frequently refer to as a waste of perfectly good blood; blood, I might add, I can ill afford to lose given this anemia thing I was born with.

My cancer did not present as a lump.  It was the astute eye of a skilled radiologist who saw a density.  Yet, the density wasn't his area of concern.  There were three calcifications that looked highly suspicious.  I've often wondered how long it might have been before my cancer was diagnosed if not for those calcifications.  The calcifications had to be removed. His words?  "I'm sure a breast surgeon would want these out to make sure it's not cancer."  The density was an afterthought, a shadow, something that was playing hide and seek on three different sonograms by two different radiologists, an area that likely would have been monitored for change, except that I was already going for a biopsy. As long as I was already having one area checked, the decision was made to check both.  The density was cancerous.  The calcifications were insignificant.

The cancer was lobular in nature which means it was a slow growing cancer that tends to be sneaky.  The prominent surgeon's words would replay in my head as I pondered my choices.  "We never catch these things this early."  An accidental finding and a cancer that, unlike ductal, does travel from one breast to the other, according to 2006 information, in 30% of the cases. Another piece of information to consider.

Radiation.  If there was a second cancer in the same breast at any point in my future, the cancerous breast would have to be removed.  I knew if I had to remove anything, something was being put in its place.  Reconstruction for me, would be essential to my emotional well being.  I learned how difficult it could be (again, using 2006 information) to reconstruct radiated skin.  Remove one?  Remove both?  I went from zero to 95% certain that my choice would be to remove both breasts.

However, I recall with great clarity how I agonized to fill in those final five points and push my decision to one of certainty. Would I freak every time I went for a mammography of the good breast? Would I turn into a pin cushion where any slightly suspicious shadow would result in a conversation that began with the words, "With your history......"

While I was at the 95% certainty mark within 72 hours, it would take an additional six weeks before my decision was made. And that decision was the right one for me when I looked at all of the circumstances individually and then, as a whole.  It was not made lightly, it was not made with a cavalier attitude.  I agonized.  I asked questions.  I researched.  I was doing things to self advocate without knowing that's what I was doing.  I was making an informed choice based upon medical evidence.

My problem with Peggy Orenstein's article has absolutely nothing to do with her well outlined explanation of the science.  It's the damn headline.  I'll bet a ton of money that the wording of the headline pissed people off before they read even one word of the article.  Thus, we read with a closed mind, digging in with our heels, because we already presume what is going to be said.  We prejudge and in that mindset, are we able to read the message?  It seemed to me that her article was strictly about the evidence and making sure newly diagnosed women, in that You Have Cancer Vortex are making their decisions with a true understanding of what they are, and are not, gaining.

Elaine's points about the cost and the angst associated with increased screening and testing for those who choose a less drastic path are well elucidated.  Quality of life and stepping confidently back into our lives after being diagnosed with a serious illness are factors Elaine brings to the discussion.  While Peggy is focused on the science of medicine, Elaine's observations incorporate the art of medicine and make no mistake, medicine is both art and science.

One final thought.  I'm not certain how I feel about the concluding paragraph in the NY Times.

"Treatment to reduce the risk of metastasis has improved over the years.  Not enough, but significantly."

I don't think there's enough evidence in the studies to support that statement.  I think the treatment to reduce the risk of recurrence has improved, perhaps significantly, but recurrence and metastasis are two completely different things.  My understanding of metastatic disease is that it's still pretty much a crapshoot.  I may be wrong, but I read almost every major study and many not so major studies and I'm just not seeing that.  At least not yet.  I may be wrong and if I am, please point me to the evidence.


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