Tag 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.







Our methods for detection and treatment of breast cancer still seem so crude.  We can’t really detect breast cancer until it’s been around for several years, and for treatment we remove body parts and give harsh treatments like chemotherapy and radiation.  Then cross our fingers and wait.  And to top it off, our methods of detection and treatment can lead to more cancer!

We need to do better.  It’s time for cancer detection, monitoring, and treatment to enter the 21st century.  But there is hope.  Knowledge from different disciplines, such as physics, chemistry, and computer technology, are meeting up with medicine and biology to create new advances.  One such advancing technology that may mean progress for breast cancer is the Lab-on-a-Chip.

Researchers in Toronto have developed a palm-sized lab-on-a-chip that can measure small amounts of estrogen in blood and tissue.  Estrogen levels of breast tissue have not been routinely measured because doing so with conventional methods required large amounts of tissue.  But the new device, using technology called microfluidics, can analyze the estrogen in samples that are 1000 times smaller than those needed for conventional methods.  Enough breast tissue can be obtained with a small needle prick.

Knowing the levels of estrogen in the breast could be an early indicator of breast cancer risk or of early breast cancer.  Being able to measure levels of estrogen could also provide a sophisticated method for assessing prevention or a method for monitoring of anti-estrogen treatment in breast cancer patients.

The device is in early development and might not be ready for “prime-time” for at least five years, according to Dr. Aaron Wheeler, the research chair of bioanalytical chemistry at the University of Toronto and a co-author of a report on the device published in the debut issue of Science Translational Medicine.  Dr. Wheeler and his colleagues reported using the device to accurately analyze tissue from two postmenopausal breast cancer patients.

Even though it is early, we may be on the verge of an explosion in knowledge and advancements with this technology.  Lab-on-a-chip technology is being developed for many areas of cancer detection and monitoring.  These devices perform different functions on minute droplets of fluid and cells on the surface of a microchip.  Many different lab functions are integrated together onto the chip and results can be ready in a few minutes.

For example, researchers at Johns Hopkins are looking at a chip to measure cancer cells’ ability to “detach” and migrate or metastasize.  Other researchers at the University of California Berkeley are using the technology to carry the vast new knowledge on genetics and cancer to the next level with study of the proteins involved (proteomics).

Let’s hope these advances get translated from benchside to bedside and help bring cancer detection and monitoring into the 21st century.

A shot (or three) to prevent breast cancer?

Once again, the dramatic claims reported recently in the news regarding breast cancer gave only a snippet of the real story.  This time, news reports announced the discovery of Human Papilloma Virus  in human breast cancer tissue. This report garnered quite a bit of attention.  Not only because finding a virus with a role in breast cancer opens up the possibility of a vaccine for breast cancer, but because we’ve already got the vaccine. The HPV vaccine is now given to pre-teen to teenage girls, in a series of three shots, to prevent some forms of cervical cancer.

It does make sense that HPV could have a role in breast cancer.  High risk strains of the virus are able to “oncogenically transform” normal cells, or in other words, cause cancer.   But is the theoretical risk real?  Do breast tumors contain HPV, and if so, what role do they play?

The recent news reports referred to research from Australian researchers that was published in the British Journal of Cancer.  The researchers found HPV in two out of eight breast cancer cell lines.  They then looked at breast tissue specimens and found HPV in 5 out of 13 DCIS breast cancer specimens; 3 out of 13 IDC breast cancer specimens; and in 3 out of 17 normal breast tissue specimens.  The authors conclude that the proportion of HPV in cancerous tissue is higher, and that the presence of HPV in some normal tissue is consistent with the requirement for HPV infection in the breast tissue before HPV-induced cancer transformation can occur.

But was this really a new discovery?  Turns out, no, not really.  Scores of research studies have been looking for many years at not only HPV and breast cancer, but other viruses as well, including the Epstein Barr Virus.  Studies around the globe have found HPV, Epstein Barr, and other viruses, in varying amounts in breast cancer tissue.  Other studies have failed to verify the same results, making the ideas controversial.  But the research may be picking up steam.  What IS news is that the laboratory methods used to identify viruses in breast tumors have recently advanced and are considered more reliable.

So where do things stand now?

There is “substantial, though not conclusive” evidence that viruses, including HPV and Epstein Barr may be involved in causing some breast cancers,  according to a review on the topic published this year in the Journal of Cancer Research and Clinical Oncology.  The exact role of the viruses is not clear, but it appears that the viruses are responsible for causing one of the steps in a series of steps required for cancer development, according to the authors.

I’m encouraged by this research, and hope to see more.  So much of the research into finding a cause of breast cancer and potential preventive strategies seems like searching for a needle in a haystack.  But the possibility of a virus having some role, and the possibility of vaccines for the disease,  seems well worth continued research efforts.

Can we prevent breast cancer in our daughters?

The reason I’m so passionate about finding reliable, scientifically-based ways to prevent breast cancer, is the bright-eyed, ten-year-old girl that lives down the hallway.   If there is anything my daughter can do now to prevent the hell of breast cancer from visiting – and no, breast cancer is not pink, pretty, OR inspirational!- I want to know what it is.   Eat well?  Exercise? Throw out the Halloween candy?  What?

But looking at the evidence – none of those things seem to matter much.  When it comes to pre-menopausal breast cancer, the kind I had, and the kind that I worry about most for her, most of what we know about breast cancer just doesn’t apply.  In fact, one of the largest studies looking at prevention of breast cancer, the Nurses’ Health Study, found that many of the lifestyle associations with breast cancer -the ones you read about in the news – have OPPOSITE effects on pre- and post-menopausal breast cancer.

The Nurses’ Health Study is probably the largest and longest running study to look at factors associated with breast cancer development.   The study originally began in 1976, as a  study of the long-term effects of birth control pills.  Over 100,000 nurses have been followed since the beginning.  The nurses answer questions about health, smoking, hormone use, and menopausal status, every few years.  Questions about diet were added in 1980.  Over 115,000 additional nurses were added to the study in 1986.  It takes a long time, but this kind of study, a prospective study that follows people into the future, is the best kind of study to look at associations with development of disease.   It was a prospective study like this one, the Framingham Study, that gave us most of the information we have today about what contributes to heart disease.

The good news is that recruitment is underway for another group of nurses to join the study, younger and more diverse.  Plans are to invite a million women to join and to focus on adolescent diet and breast cancer risk, among other things.  The bad news is that it will be decades before we have the results.

So what can we say from the studies so far?  Women are at a slightly greater risk of premenopausal breast cancer while they are on birth contol pills, and for up to ten years after giving birth.  Even though giving birth, and giving birth at a younger age, is protective against post-menopausal breast cancer, is does appear to increase the  immediate risk of breast cancer for a period of time.

But one of the most surprising findings of the Nurses’ Health Study? Being overweight had the opposite effect on pre- and post-menopausal breast cancer.  For nurses in the study, being overweight increased the risk of post-menopausal breast cancer but decreased the risk of pre-menopausal breast cancer.  And more relevant to preteens, women who were overweight before their first periods had a lower risk of breast cancer.  That’s right, being overweight as a pre-teen was protective against breast cancer.

Physical activity?  According to the Nurses’ Study, activity was somewhat protective against breast cancer after menopause but had no impact on breast cancer before menopause.

Now, before I hear from Ann Fonfa, I want to be clear that I am not advocating for poor diets and increased weight for preteen girls, and either are the folks involved with the Nurses’ Study.   They were encouraged to find that if diagnosed with premenopausal breast cancer, those who were lean did tend to have smaller, and less aggressive cancers than those who were overweight.

From their newsletter, “Even though being active doesn’t offer much protection against pre-menopausal breast cancer – and being lean actually seems to increase risk – we still encourage women to be both lean and active throughout their lives.  The health effects of regular exercise and a low body mass far outweigh the risks of developing premenopausal breast cancer.  Furthermore, when premenopausal breast cancers do develop, they tend to be smaller and less-aggressive in leaner women than in overweight women.”

Any findings we can act on?  They have found a slightly higher risk of premenopausal breast cancer with higher intakes of animal fat, mostly high fat dairy, and mostly associated with estrogen receptor positive cancers.  And they found some suggestive results that higher consumption of Vitamin D and vegetables lowered the risk for premenopausal breast cancer, but not for postmenopausal.

Unfortunately, the biggest risk found for premenopausal breast cancer?  Having a mother diagnosed with breast cancer before age 45.  Damn.

So, bottom line for me and that ten-year-old?  I’m going to lighten up a little bit about the Halloween candy,  but continue using organic, non-fat milk and encourage the vegetables.  But in my heart I know, this  isn’t good enough.  We need to know more and do more to prevent this disease in these high risk, bright-eyed, ten-year-old girls that we love so much.  Please, don’t settle for the hyped news releases and the quasi- science.  Demand the right science so we can get the right answers!

Next, on to good basic science.  Could there be a shot (or three) to vaccinate our daughters against breast cancer? Check back ….

For more information on the Nurses’ Health Study, go to http://www.nurseshealthstudy.org.

How much will you pay to hear what you want to hear?

Everybody wants to believe they can control whether they get breast cancer or not.   Of course we want control over this disease.  It’s pretty scary  to think it can happen to anyone.

It follows doesn’t it, that we will support the organizations that tell us what we want to hear.  The ones who give us control.

Yesterday, I reported on a large, well-designed study that followed over 300,000 women for eleven years and found no concrete link between a meat or dairy free diet and breast cancer risk.  But alas, the NY Times, and several other news outlets report this week that almost half of all breast cancers can be prevented – simply by a healthy lifestyle including a vegetarian diet.  Huh?  If it can make that much difference, how could that large, prospective study I reported on yesterday have missed it?

I did a little digging.  The news articles are basically reprinted press releases from the American Institute of Cancer Research.  Who are they?  Well, it turns out they are a “charity” that funds and “interprets” science on cancer prevention.  Here’s the rub – over half of the organization’s public education efforts  are tied to fundraising appeals.   And those donations?  CharityNavigator gave them a poor rating for putting those funds back into research.  According to the Better Business Bureau the CEO earns over $400,000.

Ok, what about the science?  Where did they come up with the claim that 70,000 cases of breast cancer can be prevented each year?  I read through several pages of the report and could find no valid scientific explanation for how they arrived at that number.  It appears to be a huge leap or “interpretation” made by their panel of experts.  As far as diet and breast cancer prevention, within their own report they list the evidence as “limited” and not convincing or probable. And even more interesting, they report convincing evidence that body fat is associated with an increased risk of breast cancer in postmenopausal women but a DECREASED risk in premenopausal women.  They couldn’t very well include that in their press release could they?  Get fat!  It will help you prevent breast cancer!

So the AICR got a lot of coverage for their bold, unsubstantiated claims and scientific “interpretations” which I’m sure they are using in their telemarketing campaigns as we speak.  I guess they are counting on very few people actually looking for the evidence in their report.

Read it for yourself.  NYTimes article:      http://www.nytimes.com/2009/09/08/health/08regi.html?_r=1&em

AICR Report:   http://www.dietandcancerreport.org/ Oh, and they will make you register to read the report.