Category Archives: breast cancer prevention

Inaugural Advocate Leadership Summit: Where are we in 2013?

 

These were comments I gave during the opening plenary session on the breast cancer world in 2013. My presentation followed presentations by Dr. Silvia Formenti, Dr. Susan Love, and Dr. Dennis Slamon and our session was moderated by advocate Amy Bonoff.

Photo: Group Photo from the Inaugural Advocate Leadership Summit

Good morning.  So we’ve heard a lot about where we are today with breast cancer, and a little bit about where we need to go.  It’s clear that a lot needs to change. Over 300,000 women will be diagnosed this year with in situ or invasive breast cancer but at least one third of those women will have been overdiagnosed, put at risk of toxicities from treatments they didn’t need.  And though screening has led to an increase in the diagnosis of early breast cancer, particularly DCIS, the rate of those diagnosed with Stage IV disease has not declined, but instead has been holding steady at the same rate for the past 30 years. I would tell you the rate of women diagnosed with recurrences every year, but I don’t know.  It’s not tracked.  But I do know that the median survival for all women with metastatic breast cancer has also remained constant, at about three years. 

The good news is that we are preventing some recurrences – we have seen steady, incremental declines in breast cancer mortality since the early 90s – but the bad news is we don’t really know why.  We do not know how to save the lives of individual women. The overall picture of recurrences is murky, we don’t know much. As I said, we don’t track these women. It’s like the world wants to ignore the true nature of breast cancer, a disease that can hide out for a few years or many before reappearing.  No medical oncologist can truthfully tell an individual woman how to prevent a recurrence, or if she is indeed “cancer free” once she has had a diagnosis of breast cancer.  As patients ourselves and watching our friends, I think most of us would agree, it feels like a crap shoot.  Good luck or bad luck. 

And so there is much that must change.  We need fewer women being diagnosed with breast cancer in the first place.  We need to understand prevention, prevention of lethal disease, and just as importantly, we need to understand how to prevent those with non-lethal disease from being brought into the system, lowering their quality of life, putting them at risk for toxicities needlessly, some of those toxicities deadly, and straining the health care system with increased costs.  And we need to understand how to prevent recurrences and metastasis.  So much focus is on the primary disease, ignoring the fact that the majority of women die of metastasis, and most of those experienced metastasis after a recurrence.

So why has so little changed?  I’ve spent a lot of time thinking about this, and I think it is because the world of breast cancer has grown exponentially, explosively, and in so many directions, way beyond the disease itself.  So many people have become invested in breast cancer and everything surrounding it, way beyond the patients themselves. All of this attention has caused distraction, misguided focus in the wrong places, and worse yet, brought tremendous investment in the status quo. 

Because breast cancer has garnered a lot of attention it has attracted so many people to attach to it – many businesses have thrived directly, mammography providers, biopsy device businesses, hospitals, pharmaceutical companies, oncologists, to name a few. And then there are businesses with no direct connection but that use cause marketing to drive profits, or to counteract bad PR, and this is where we get more bizarre partnerships each year – we can vacuum, pump gas, drink hard liquor, and bake for the cure. Breast cancer is the mother of all cause marketing.

But then we also have scientists who are pursuing new knowledge about cells, genetics or biochemistry, whatever their interest, which is great – but they know there can be good avenues for their funding if they somehow link their interests to breast cancer, and they do.   And non-profits with various agendas find ways to link their cause to breast cancer, knowing concern about breast cancer will drive their own influence and fundraising.  Politicians even get into the act for the women’s vote, whether they help light up pink bridges or express outrage at new mammography guidelines, they can show their support for women’s issues.

Breast cancer is so much more than a disease, it is an industry, a feel good cause, a fear for all women, an inspirational journey for women’s magazines.  In fact, I would argue, you couldn’t dream up a better consumer situation for profit and growth with strong forces for maintenance and keeping the status quo.  Let me see if I can explain what I mean:

With breast cancer we have half the population at risk, the half that is most compliant, most likely to defer to authority.  They are at risk of something that is very scary, that can take away so much, parts of the body, sexual identity, hair, and worst of all life. They are constantly reminded of that risk when they shop, go online, read a magazine. They have very little reliable information about the causes of breast cancer, so it will seem almost random, creating great anxiety and fear, and creating a great market for doing something, anything, to protect oneself and to contribute to a cure. 

That fear, the compliance, the trust of authority all leaves women vulnerable to overdiagnosis and overtreatment, but is a boon for business.

Think about treatment decisions.  Women are the caretakers.  We are willing to take it all, add it on, add it up, give me everything, anything that contributes one iota to more time with our families.  At whatever the cost, to ourselves, our bodies, our bank accounts, no matter how small the promise of benefit.

And then the disease itself contributes by being so complex; it is not one disease, though portrayed as if it is to the public. There is no easy answer.  There is tremendous opportunity for scientists, who are in the business of discovery, of finding something new, exploring the seemingly infinite number of mutations and pathways associated with breast cancer.  The more we learn, the more it seems that each individual tumor is unique, with its’ own unique fingerprint, most likely unique causes, and most definitely unique responses to treatment.  And these tumors aren’t frozen in time, but continue to evolve and change.  A fascinating playing field for science.    No question, a lot of resources dedicated to discovery in breast cancer, but not so much in translation to the clinic. And, not so much to discovery upstream, earlier on in the disease or in the normal breast, the kind of discovery that could lead to prevention of the disease.  But who does that benefit besides our daughters?

So much change is needed.  Don’t get me wrong, there are many hardworking, dedicated people focused on making positive change for women and future generations.  But they often face difficult challenges within the system.  So this is where you all come in.  WE, all of us together, can be one strong, powerful voice calling for change. 

And so now I want to talk a little bit about breast cancer advocacy.  Where we have been and where we need to go.

First of all, what is an advocate? An advocate is defined as someone who speaks, writes, or stands up for something or someone; someone who supports or promotes the interests of another. 

In the early days of breast cancer advocacy, this is exactly what was done.  There was a need to bring attention to the disease, bring it out of the closet.  And this was done successfully. Women can speak openly and freely about the disease.  But advocates went on to do so much more than this, speaking out about the needs of breast cancer patients.  And in particular NBCC advocates, spoke out and were successful in obtaining increased access to medical care for women with breast cancer, and increased federal research funding directed at the disease.  Scores of women and men have been empowered and educated, and now have a seat at the table where decisions are being made that impact those with breast cancer.

But now we need to kick it up a notch.  We need to be the advocates for change in the breast cancer world.  We must see ourselves as not only advocates, but activists, defined as those who take direct, vigorous action to bring change.

You as our leaders must understand this better than anyone.  Breast cancer advocacy has become diluted by so many who seek to use advocates to promote their own agenda.  Be wary of who or what you are advocating for when you are recruited as a breast cancer advocate.  Put the task through the BCD2020 lens.  Am I seeking change here?  Will this contribute to ending breast cancer?  Or am I contributing to the status quo? Things have gone awry in the breast cancer world and we, as activists, must seek to turn things around, seeking change rather than protecting the status quo. We need to demand more focused research with the end results in mind. We need more translational research. We need to focus more upstream, even to the normal breast, so we can understand prevention.  And we need to measure what matters.  And that is what this Summit is all about.  We will be learning, we will be brainstorming new ideas, and we will be making plans for that direct, vigorous action that will bring change.

And I want to end with the positive.  We do have some of this happening already.  Particularly, with NBCC’s Artemis Projects, we are demanding focused research with the end results in mind.  These are experiments that will try out a new way of doing things, and hopefully be a model for others.  We will have an opportunity to hear about some of these efforts in the next session.  But we have only just begun. And we need so much more to happen.  We are counting on all of you to work with us to help make it happen.  So let’s get it done.

 

 

 

Remarks at the Collaborative Summit on Breast Cancer Research

Collaborative Summit

I attended the Collaborative Summit on Breast Cancer Research in Washington D.C., held January 31- February 1. The goal of the Summit was to gather researchers, funders, advocates, and industry representatives together to assess the breast cancer research landscape and to develop collaborative projects for moving forward. Below are the remarks I gave during the opening plenary panel on the breast cancer research landscape and on NBCC’s current projects and priorities.

I am excited to be here and to have the chance to talk about the bigger picture of breast cancer research, where we have been and where we should be going. So much of the year is spent down in the weeds when it comes to breast cancer research, when we attend the ASCO meeting or SABCS, or when we review grant proposals, so it is gratifying to have this opportunity to for all of us to pull our heads up from the weeds and to discuss the long view.

And for me, the long view, means thinking about my 13-year-old daughter. Where do we need to be by the time she and her friends are adults? Are we on track? Will things be dramatically different in ten, twenty, thirty years when it comes to breast cancer? Or will mothers, grandmothers and young women and even men still be dying of breast cancer? Will we know by then why breast cancer cells can lay dormant for 15 years to reemerge and metastasize? Will we know how to eliminate those dormant cells from the beginning? And what about women who have aggressive disease from the get-go. Will we understand why it developed and more importantly know how to stop the progression for the long-term?

Unfortunately, I don’t see dramatic change on the horizon with current approaches. The ACS predicts that over 300,000 women will be diagnosed this year with in situ or invasive breast cancer. Dr. Gil Welch and others predict that between 30 to 50% of those could be considered overdiagnosis. We continue to add more women into the equation, putting them at risk of harm from treatments, and yet, are we seeing a difference in the measures that matter? Yes, we have seen steady, incremental declines in breast cancer mortality since the early 90s, but there has been no acceleration in this decline. And do we know what this really means? What IS working for women and what is not? Do we know how many women have died from the treatments? Do we know if death from breast cancer is being delayed rather than prevented? Are we really any closer to knowing how to prevent breast cancer or a breast cancer death for an individual woman?

What we do know is that the rate of diagnoses of Stage IV disease has remained constant for 30 years. What we do know is that 40,000 women and men will die from the disease again this year. What we do know is that the median survival for metastatic breast cancer has remained constant, at about three years.

With billions in resources and decades of effort, we see discovery of new targets, and development of new agents, that extend life by three to four months at a time, if we are lucky. We are learning a lot about the DNA of breast tumors, and the layers of complexity involved, but are we really gaining a better understanding of the why and how of breast cancer? The kind of understanding that will allow for development of gamechangers?

A pharma analysis report prepared a few years ago concluded that with what is currently in the pipeline, and based on historical trends, the median survival for metastatic breast cancer will inch forward from three years, to three years and six months by the year 2021. Important progress and critical efforts, yes, but is it good enough? No, it is not good enough. We can and must do better. We need new approaches to complement the old ones. We need new ways to look at the disease. We need to find approaches that give us hope of doing better. Targeting of mutations alone, in a disease that constantly grows and mutates, will never be enough.

In 2010, NBCC set a deadline. By the end of the decade we need to understand much more about metastasis and about development of primary breast cancer, so that we can prevent deaths and end this disease. The deadline is a tool to cause disruptive change. The purpose is to shift the focus, to look at the disease differently, to consider new approaches that give us hope of doing better.

How do we get there? To achieve success we have to do more than bring everyone together who works in the field, increase funding, and see what happens. We need to demand more focused research with the end results in mind. We need to bring new perspectives to the table. We need more translational research. And we need to measure what matters. It may just take having specific goals in mind, timelines, and yes, deadlines to get us there.

Many say to us, that’s not how science works. But, I know how science works. I did graduate work in nutritional biochemistry at Cornell University, I carried out a large thesis project involving lactating rats, looking at the impact of malnutrition on milk composition. I know that science works by asking questions, and figuring out how to test theories about the answers to those questions.

So what if we can all agree on what those questions should be? Questions that will help drive us to an understanding of how to prevent deaths from breast cancer? Science can work towards meeting goals and yes – even meeting deadlines. I know I had to answer my research questions in a certain time to finish my thesis and graduate. Scientists meet deadlines all the time. Right now, in the field of breast cancer research, we have many people asking many questions in an infinite number of directions. We are producing incredible volumes of information. But for all of that effort we are seeing minimal benefit for women. Something has to change. We need leadership and coordination of efforts, sharing of information, all of us working together on common goals. We need the will to ask the right questions, and the resources to explore those questions. And then we have to measure what matters to judge success.

NBCC has spent the last two years exploring how to do this on a small scale with what we call Artemis Projects. These are a series of collaborations among patient advocates and researchers from diverse perspectives. The purpose of the collaborations is to develop strategies, research plans and timelines for answering key breast cancer questions. Patient advocates are there to make sure efforts are always focused on the end result.

The first of our Artemis Projects was launched in 2011, bringing together a group of advocates and scientists to take a strategic, systematic yet broad approach to the development of a breast cancer preventive vaccine within five years. We bring together a group of close to 40 each year to assess progress and to readjust plans. We also hold smaller meetings to bring together experts to bear on particular issues as needed, and have an online community for the project to keep things moving in between meetings.

As most of you know, we don’t typically fund research directly. But through the generous support of National Philanthropic Trust (NPT), NBCC has awarded two seed grants as part of this project, one to Dr. Paul Spellman and Dr. Joe Gray of Oregon Health and Science University to identify possible vaccine targets using existing and developing human genomic data within different breast cancer subtypes.

And a second seed grant was awarded to Dr. Paul Ewald at the University of Louisville, and Dr. Vladimir Belyi of The Cancer Institute of NJ to look at infectious agents and breast cancer. Bioinformatic tools will be used to take a systematic approach to intersect the genomes of known viruses and a broad array of cellular pathogens to identify their presence and prevalence in breast cancer genomes relative to normal breast tissue. Initial data from both of these seed grants will be presented at the next annual meeting in March.

We will also be kicking off a second Artemis Project on Metastasis in June to focus on tumor dormancy. As with the Artemis Project on the Preventive Vaccine, our goal is to bring together investigators with diverse perspectives to brainstorm and develop innovative strategies for accelerating progress.

In summary, I think we do have the will and the resources to come together on asking the right questions. We have heard from others this morning about new initiatives focused on prevention and metastasis. I see positive steps being taken to prove that pharma analysis wrong. If we can keep the end result in mind, where we want to be when all of those 13 year olds are 21 year old adults and beyond, I feel hopeful we can change the course. I look forward to the rest of the meeting for further discussion on how we are going to get there. Thank-you.