Category Archives: breast cancer awareness

My Last Day

 “I’m convinced that eradicating breast cancer won’t happen until we understand a lot more about breast cancer metastasis, the spread of cancer to other parts of the body.  People die from the metastases, not the primary tumors, and understanding how and why it happens, and how to prevent it, should be a research priority.”

“Despite widespread awareness campaigns and massive fundraising efforts over the years, breast cancer is still the second leading cause of cancer death among women.  There have been small steps forward in combating the disease but we need much, much more.”

These are words I wrote back in 2009, when I launched this blog.  Today is my last day working at the National Breast Cancer Coalition, and I will be retiring my advocacy hat, at least for awhile. I felt compelled to look back at my early thoughts on breast cancer and advocacy.  I’ve had many experiences and learned so much over the last four years. I expected to cringe at my early words, that they might seem naive. And yet, these thoughts still ring true. In the end, what I learned was that the goals of my advocacy as a recent breast cancer patient, were not misguided or naive, but that money, politics, and influence are difficult drivers to navigate.

I was right about the breast cancer industry, that powerful influences were distracting us or preventing us from making progress. I just had the opportunity to experience some of that industry up close, and to understand the forces we are up against.  I learned that breast cancer advocacy is as often about a strategy to navigate around influence and ego as it is about the development of a research strategy. It is a combat sport, leaving bumps and bruises, and even a few scars.  I’m sure it is the same with any efforts to bring about major change.

But the need for change remains the same, four years later.  We do need to do much, much more.  We shouldn’t settle for small, barely noticeable improvement in breast cancer mortality, but hold out for significant progress against this disease. And we need to understand metastasis to do so. I was reminded of dear Maria as she commented on those early words on my blog, responding to my thoughts on metastasis with some information on research she had read about. “It’ll be fascinating research to follow,” she wrote.   Maria died from breast cancer metastasis this year and it was a tremendous loss for so many of us, as I wrote about in May.  But she was only one out of 40,000 to die from the disease this year, every one of those women with a circle of family and friends experiencing a terrible loss. I still believe that with all of the attention and resources focused on breast cancer, there must be a way to change this for the future, for our daughters.

I’m encouraged to see some change in focus since 2009.  There is more discussion about metastasis, a recognition of the importance.  Groups are coming together to focus on the needs of women dealing with metastatic disease and on the need to understand and prevent metastasis to achieve real progress against the disease.  I suspect there will be collaborations across cancer groups as we learn more about the biology of cancer, that there will be a recognition that the similarities across sites probably outweigh the differences.  I’m hopeful that this change in focus, and the new energy and collaborations involving advocates will not just create another arm to the industry, but will result in real change in the future.

As for me, I am returning to medical journalism. I am going back to the International Medical News Group, a place I worked during my twenties as a medical reporter.  I will be a managing editor for oncology.  I’m looking forward to working with friends from many years ago and with new colleagues, and learning more about the broader world of oncology.  I’m not discounting the possibility that learning more about all types of cancer, new treatments and approaches, will help me in some way as a future advocate, but for now I am taking a break.

I do hope I continue to cross paths with the many wonderful, and passionate, advocates I have met along the way. It is your energy that will bring about change for our daughters.  And I want to thank Fran Visco, president of NBCC, who has been doing this for so many years, for taking a chance, and giving me the opportunity to work as a telecommuter to offices in DC.  Her fortitude continues to inspire.

May 2014 bring good things to us all.  Happy New Year everyone!

Hoping for a Cure

After I was diagnosed with breast cancer I wasn’t sure how I felt about pink ribbons.  They were suddenly everywhere I turned.  A lot of people seemed to care about breast cancer and there were certainly a lot of people hoping for a cure.  There were plenty of businesses getting on board too.  I could shop for the cure, bake for the cure, drive for the cure, even vacuum for the cure.  But something made me uneasy about all of this pink and hope.  If all of this shopping and hoping was making a difference why did I get breast cancer out of the blue in the first place?  And why was I being treated with the same toxic treatments of the past that may or may not prevent the cancer from returning?  The best I could do after eight months of surgeries, chemotherapy, and radiation was wait around and see if I died of something else to know if it had worked.  Not a lot different than what happened to women who were diagnosed with breast cancer decades before me.  That didn’t seem like much return for the millions of dollars being raised on pink ribbons and hope for a cure each year.

If hope was enough we would have cured breast cancer years ago.   But instead of curing breast cancer all of this hope and pink has created a huge economy that feeds on the disease and is sustained by people’s fears of the disease.  Cause marketing led to $1.55 billion in spending in 2009, with breast cancer being the greatest netting cause.  And the business of breast cancer extends far beyond cause marketing. The mammography business is expected to surpass $1.1 billion by 2015, according to a report by Global Industry Analysts, Inc.  The US market for vacuum assisted breast biopsies is expected to net $350 million by 2012. Pharmaceutical company Roche brings in $1 billion in revenues each year from Avastin for the treatment of metastatic breast cancer, despite the failure of studies to show it increases survival.

It is time to move beyond hoping and shopping for an end to breast cancer.  We must shift the status quo from the business of breast cancer to the end of breast cancer.  We must replace the complacency. We must bring back the urgency to end this disease.  We must demand accountability from those making a profit off breast cancer, and ensure that resources and efforts are focused in the right places to bring about eradication of this disease.

We’ve never set a deadline before.  It is time. Ten years to get it done.  Breast Cancer Deadline 2020.   www.breastcancerdeadline2020.org

The Color of Bras

Those of you on facebook probably know about the chain letter that spread like wildfire this week, asking women to post the color of their bras as a facebook status to spread breast cancer awareness.  Millions of women played along.  Even caught the attention of CNN.

At least one company and breast cancer organization figured out how to benefit.  Living Beyond Breast Cancer made an arrangement to receive $1 for every member that became a fan of White House/Black Market and posted their bra color on the store fan page.

Bloggers have been weighing in.  One wrote that she participated but had second thoughts.   Another particularly poignant one was from a woman who  owned no bras and felt left out.  Both of her breasts had been removed because of  inflammatory breast cancer.

The reaction from advocates has been mixed.  Some tentatively played along.  Others announced it was frivolous.  Some were told to lighten up.

To me, it’s another example of what is wrong with how we are approaching the problem of breast cancer.  Publicity for no other disease would be flirtatious or so silly.  Think about it.  What if to spread the word about diabetes people said “Save the feet!”  and asked people to secretly post the color of their socks on facebook.  It would never happen, and if it did, it would be seen as incredibly insensitive.  Breast cancer is a horrid, ugly disease, but somehow, this powerful association has been created of things pretty, pink, inspirational, sexy, and sometimes silly.

But the incredible spread of this facebook chain or meme speaks to how much women care. Women DO care about breast cancer and they want CHANGE.  Sure, some wanted to be part of the group, some wanted to be titillating to the men on their friend list, but mainly I believe that most played along because they do care about breast cancer.

Women want to stop hearing that friends or family members develop the disease.  Women want to stop worrying that they too will develop the disease, or that their daughters will.  Women want treatments developed that won’t be so harsh as the current, and that  will work, preventing the disease from spreading and taking lives.

How to translate all of that energy and passion into action and progress?  The first step is simply to take awareness up a notch.  Let’s become aware of the reality of breast cancer.  Learn that breast cancer is really several diseases.  That breast cancer is often different in younger women and older women.  That many of our preconceived notions aren’t true.  To learn more about the realities, click here.

And to really crank it up a notch, come to the National Breast Cancer Coalition Fund’s Annual Advocacy Training Conference in May.  For more information or to register, click here.

Today is Metastatic Breast Cancer Awareness Day

Forty years ago, women with breast cancer were viewed as tragic victims, and they mostly dealt with their disease in isolation.  But over the years, the pink revolution, and the “coming out” of celebrity women such as Betty Ford, has brought the disease out into the light.  Those with the disease were transformed from victims to survivors.  Popular culture has even portrayed the breast cancer experience as an enlightening or enriching experience.  There is now a pink cheerfulness and sisterhood associated with having survived and beaten this disease.

But those living with Stage IV disease have been left out.  Unfortunately, women living with advanced breast cancer are still isolated in our society.  And perhaps the pink revolution has made it even more difficult for these women.  Because now, many people, and even some within the breast cancer community, want to view those with metastatic disease as those who didn’t do what they were supposed to, didn’t get their mammograms on time, didn’t fight hard enough, didn’t stay cheerful enough, didn’t exercise or eat well.  It’s much easier this way than facing the reality of breast cancer, and how little control we have over the disease.

The reality is that approximately 5% of the over 180,000 women diagnosed with breast cancer each year have Stage IV or metastatic disease at the initial diagnosis, and between 20-30% of the rest will have metastatic spread of the disease in the future.  By 2011 there is expected to be 162,000 women living with metastatic breast cancer in the U.S.,  according to Dr. William Gradishar from Northwestern University Feinberg School of Medicine.

It’s time we bring those living with metastatic breast cancer out into the light too.

For more information on Metastatic Breast Cancer Awareness Day click here.

For information and support:

Metastatic Breast Cancer Network

AdvancedBreastCancerCommunity.org

BCMets.org

AdvancedBC.org

The Truth About Breast Cancer is Not Pretty and it’s not Pink

“Incidence rates of distant-stage disease have remained stable.”

– From the latest report on breast cancer from the American Cancer Society, discussing breast cancer incidence over the last several decades.

After 25 years of marking National Breast Cancer Awareness Month and promotion of mammography and early detection as the cure, the reality for 40,000 women who die from breast cancer each year remains unchanged.  Despite the increase in catching early, smaller tumors with the increased mammography, the incidence of women diagnosed with a later stage breast cancer, one that has spread beyond the breast, HAS NOT CHANGED.  Of the close to 180,000 women diagnosed each year with breast cancer, approximately 37% are diagnosed with later stage cancer every year, and still others have a breast cancer recurrence.  Why?  If mammography was going to be our cure why hasn’t breast cancer mortality declined dramatically after all these years?

The truth is that mammography and early detection are not the cures for breast cancer that everybody thought they would be, but we can’t seem to get off this train.  Pink marketing and promotion of early detection have taken on a life of their own, way out of proportion to the actual benefit.  What’s the harm?  The harm is that we’ve lost our focus for finding the real answers.  We continue to fail those 40,000 women every year.  We need less focus on “early detection” and more focus on understanding the reality of breast cancer –  how to stop the aggressive cancers that aren’t detected with mammography, how to stop breast cancer from recurring, and how to prevent it from metastasizing to other parts of the body and becoming lethal.

National Breast Cancer Awareness Month was established 25 years ago by AstraZeneca, a pharmaceutical company that has produced breast cancer drugs including Tamoxifen and Arimidex.  The goal was to promote mammography as the “most effective weapon in the fight against breast cancer.”  But back then, everybody thought breast cancers were all the same.  We now know breast cancer is not one disease, and that different breast cancers take different paths, grow at different rates, and spread differently.  Mammography is probably most helpful in finding the slowest growing and least harmful kind of breast cancer.  Many women who are diagnosed with an advanced breast cancer have “interval” cancers, or cancers that were discovered in between regular mammography screenings, or are younger women who don’t yet get regular mammograms.

If success was measured in awareness and pinkness, I’d say AstraZeneca’s campaign has far surpassed their wildest expectations.  But if we ask has mammography turned out to be the most effective weapon?  Are significantly less young women and mothers dying of breast cancer?  Then sadly the answer would be NO.

Let’s  move beyond the hype for our next National Breast Cancer Awareness Month and demand a focus on what we really need to cure this disease.

Going Beyond Pink Purchasing in Breast Cancer Awareness

Kudos to Rethink Breast Cancer, a group in Canada focused on young people affected by breast cancer.  They hold an annual film festival dedicated to not only breast cancer awareness but to the underlying issues connected with the disease. The festival uses films, panels, workshops and speakers to “connect people to the breast cancer cause, inspire dialogue, facilitate learning and foster community.”

This year’s Breast Fest will be held November 20-22 at the Royal Ontario Museum, in Toronto.

If you can’t make it up to Toronto in November, no worries, you can still watch and vote online for the short film competition.   Go here to check out more of the videos and vote for your favorite!

For more information about Rethink, visit www.rethinkbreastcancer.com.

breastfest