Monday, April 29, 2013


May 5th: Note from author...
I just saw a piece written on which was posted on the same day this post appeared.  Geoffrey Kabat asks "Can Setting A Deadline Put An End To Breast Cancer" ------

What just might be the most significant piece of writing appeared in the NY Times magazine on Sunday.  It hit the internet last Wednesday and quickly was all over twitter and Facebook.  At least that's the way it was in my circles.

Peggy Orenstein wrote THE story for the NYT magazine.  It was the cover story.  I don't get the print version of the paper any longer but I will be ordering this issue.  Our Feel-Good War on Breast Cancer appears in the April 28, 2013 magazine. First of all, tis refreshing to see Pink Mania in April.  It's more refreshing to read what may be the clearest, easiest to understand explanation of the pink hype, DCIS, mammography debates and how we are still just approaching the starting blocks when it comes to treatment of metastatic disease.

Yes, it's a mandatory link click and yes, there will be a quiz.

Peggy did a radio interview, too.  I listened to it in its entirety.

Eloquent and pitch perfect.  The writing and the speaking.

I wanted to make sure I said thank you and Peggy's response quite simply blew me away:

Metastatic Breast Cancer Network provides an excellent synopsis of the article on their blog.  Katherine O'Brien expands on what are some of the most important points in that article.  Metastatic research is near and dear to my heart.  It's been like that since the beginning so I was quite happy to see the write up.  From their blog:

MBCN says:

Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:

(in response to this portion of the article)
According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.
There’s also the intertwined issue of funding research for the prevention of metastatic breast cancer vs. treatments that will extend the lives of those currently living with the disease:
“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

While I was in Washington at the AACR meeting I had the opportunity to speak to a researcher who is highly accomplished and works in a world-renowned lab.  We talked about DCIS and the importance for research to establish clear and proven methods to determine which DCIS lesions will become invasive.  We discussed research to halt disease progression of invasive cancers, in simple terms, how do we stop those diagnosed with early stage cancers from joining the Metastatic Club… like my mom did, likely after 25 years and like Jody just shared on Friday, definitely after 15 years.  Finally, we talked about metastatic disease and the desperate need for research that stop the disease from progressing any further. How do we prevent death?  

On the surface, each of these three scenarios seeks to answer the same question.  What causes progression and what can be done to interrupt the process?  Although there may be a crossover in the research of these three very distinct areas, for now research specific to prevention of metastasis IN NO WAY helps those who are already living with metastatic disease.  As Danny Welch who is a staunch supporter in the field of metastatic research notes, people are being thrown under the bus.

Sticking with the bus analogy and using the numbers that are available, there are in excess of 150,000 patients already under the bus.  They are the ones with metastatic disease.  There are approximately 2.7 million breast cancer survivors in the US.  Removing the 150K already living with metastatic disease from those 2.7 million, if current estimates are accurate, in excess of 750K “survivors” will be thrown under the bus.

Yes, it is important to learn what will send those 750k from walking in the bus lane to being thrown under the bus but WHO is talking about those who are already under the bus?  I have taken offense with this in the past.  I was a bit subdued in my irritation and I was called out on that, “You are being too nice.”  It was Lori, my friend and our blog buddy who hurled those words at me.  I told her I didn’t feel I had the right to be quite as indignant as she might be.  After all, I explained, I am not a patient with metastatic disease.

While that is still true, I am now the daughter of a patient with metastatic disease and I am surrounded by a number of very good friends who are metastatic patients.   There has been more than a slight shift in my irritation.

I believe we must be respectful of all organizations.  Everything is not for everyone.  There are many gaps and there are plenty of niches that need to be filled.  There are organizations that support the underserved.  There are others that fill the needs of those of us beyond active treatment who are still learning how to navigate what can, at times be traumatizing.  Many organizations support research.  Few of those are devoted strictly to the study of metastatic disease.  I can suggest we encourage those funding broad research to consider redistribution so more money is funneled into metastatic research.

What I cannot accept is an advocacy organization that is an umbrella for ALL breast cancer to deliberately omit metastatic patients from their conversation.  The National Breast Cancer Coalition is doing just that and frankly, I am disappointed.  I supported NBCC and Deadline 2020.  I believe in many of their programs.  It was their effort that paved a path to my seat at the Department of Defense grant review panel this past October.  Project Lead has given many the education and the tools to be better advocates.

On January 4 of this year, I wrote a blog post in response to an email from NBCC seeking membership input for the 2013 priorities.  Ironically, that very same day was the day I was with my mom at MSKCC.  Ironically, that very same day, we were given the results.  Sadly and ironically, that was the day I learned my mom is now a metastatic patient.  I asked that the National Breast Cancer Coalition include ALL breast cancer in their “priorities for 2013.”  After seeing the priorities in print, I'm unhappy (understatement... massive one at that) and I'm feeling a bit like they are trying to spin something using carefully crafted phrases.

There is absolutely no mention of metastatic patients in their priorities.  NONE.  When this has been questioned (by others), they are consistently told about “saving lives through the prevention of metastasis.”  The inference is that stopping metastasis in the first place will somehow trickle into stopping the progression of disease that has ALREADY metastasized.  THAT is called “funny science.”  Every brilliant researcher I’ve asked has made it clear.  Metastasis MUST be studied on its own.  PER.I.OD.

I am troubled by those who have bought into this notion that “saving lives” means saving the lives of those who are already metastatic.  Make no mistake.  When they are left out of the conversation, when there is no SPECIFIC wording about what is being done directly for and on behalf of those who are already metastatic, they ARE under the bus.

When an organization boldly invites advocates to join them by saying, "It's time.  This is serious.  This is real.  Are you with us?" and offers not one single shred of support for the most serious of all, I stand on behalf of my mother and my friends and everyone in the metastatic community.

I promised to be fearless, I promised to be a voice for those whose energy is better served by taking care of themselves. So I say:

"This IS serious.  This IS real.  We are dying at a rate of 110 plus each day.  Are YOU with US?"

From reading the annual plan, it looks like those with the most dire needs have been totally, completely and wholly IGNORED.  I hope those who will be in Washington DC as the leadership summit commences this weekend will demand answers.  I hope they will ask those on the board to take action so that everyone is represented.  When we advocate for a particular population, we don't walk away from the hard stuff.  The best advocates, the most tenacious and the most respected advocates don't turn their backs on any in their communities.  They advocate for ALL.  ALL isn't what I see in this plan.  The omission is glaring.  

   First Pilot Artemis Project®: The topic chosen was a five year development plan for a breast cancer preventive vaccine, because of the potential impact on breast cancer and the progress made in the field of immunology. A research plan is in place, teams have been identified and the plan is being implemented. This vaccine project will serve as the model for other catalytic projects.
   Future catalytic projects. Within the Artemis Project®, future projects will be identified through Summits and other collaborative efforts. Initial areas of focus planned for 2013 and beyond include the role of viruses in the initiation, development, or spread of breast cancer; the role of inflammation in breast cancer; targeting the immune system to prevent breast cancer development or metastasis; the role of lifestyle and other external exposures in initiation and progression of breast cancer; and identifying the windows when women are most vulnerable to breast cancer development and metastasis.
Refine existing research infrastructure. NBCC will form a collaboration to identify problems that impede progress within the research infrastructure and design solutions to move the existing systems to focus on making progress toward the Breast Cancer Deadline 2020® goal. This project will include an initial workshop to review existing models of effective resource allocation that may be relevant and identify the leadership and processes necessary to achieve success. Plans will be refined, monitored and adjusted through 2020.

PS...... Peggy shares a little about Bridget in her article.  Her blog is beautiful.  And haunting.  She also shares some of Ann's story.  Ann's award winning blog is full of snark.


  1. Now I have two reasons not to renew my NBCC membership. Thank you. (The first reason is that NBCC seems to be spending the money I already contributed on snail mail solicitations for donations. WTF?)

  2. Thank you my fearless friend and fearless advocate. I also think Peggy's piece is a game changer. And yes, it is disappointing, no it's unacceptable, for NBCC to leave out the mets community. As I've said before, advocacy without including those living with metastatic disease isn't advocacy at all.

  3. "Metastasis MUST be studied on its own. PER.I.OD."
    Thank you AnneMarie, thank you Nancy.
    You both help so many who feel swept under the pink rug.
    xo Carolyn

    1. Carolyn,

      Thank you for sharing that with me. It means so much, trite as that might sound... but the simple matter is this.... Some of us have been trying to peel back the pink and it's a slow process despite the urgency....

      I am beyond grateful to Peggy for writing a cover-worthy piece for the NYT Magazine. The reach of her words has the potential to finally make a difference.


  4. Rhonda and Nancy...

    Dearest pals... it's on us.. and I'm sure this post didn't win too many popularity points but I think Peggy's tweet make me step up and do the hard stuff. This was hard to write. I support much of what NBCC does but in this case, the omission is important and I've been listening to ALL the mets patients asking that same question of NBCC and getting the same evasive answer.

    If I'm misreading or misunderstanding, I hope someone will point it out to me and explain where I've gone astray. I will retract all and apologize but for now, I'm calling it like I see it...

    Hugs to both of you,

  5. Peggy Orenstein's cover story is excellent and so clearly stated. It is sure to bring many more to this discussion. DCIS is a conundrum that needs to be solved. But more urgent, as you say, is research funding for metastatic disease and efforts to help those already living with MBC. Thank you for being willing to stand up and do the hard things AnneMarie!

  6. This is a great rally cry, my friend.
    And the #BCSM chat tonight definitely got my brain in motion. (My head is still spinning.)
    Keep ranting.
    I will too.

  7. AnneMarie,

    I'm trying to catch up on my reading. This post is awesome, and I think her Twitter response to you is significant. You are truly a fearless advocate, and I admire you. I agree that NBCC's leaving people with mets out of the conversation is not acceptable. Mets affects us all. I know people who've died from mets, I know those who have it. Even though I am currently NED, it still affects us all. The mets community is not being acknowledged, and that is very sad indeed.


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