MBCN Year in Review – 2013

by Shirley Mertz, Metastatic Breast Cancer Network President

As we approach the end of the year, I want to report to you what MBCN has accomplished in 2013– with your help and support.

We created a new logo this year to better reflect our mission—educating, empowering and advocating.   

Here are the major activities of 2013  and how they supported our mission:

EDUCATING AND BUILDING AWARENESS

Dr Don Dizon answering a question during his talk on Living with MBC

•  Our 7^th annual national metastatic breast cancer conference in cooperation with experts at MD Anderson in Houston, Texas.  Over 225 patients and caregivers attended the September 20-22 event.  All the presentations were recorded and are on our website.

•MBCN partnered with Living Beyond Breast Cancer to develop and write an expanded booklet called, “Guide for the Newly Diagnosed Patient.”  It can be ordered for free or downloaded on our website.  We urge members to take copies to their oncologist’s office so patients can benefit from it.

•MBCN expanded the amount and kind of information on our website (mbcn.org).  There patients can find our national conferences’ recordings; info about clinical trials, pain and supportive services; financial resources,  inspirational stories from those living with our disease; and advocacy strategies.

•Our new T-Shirt was popular and part of our October 13 MBC Awareness Day campaign.

•Our short videos were also well received, especially during October.

How do you LIVE with metastatic breast cancer?

Use Your Voice

Dumb things people say about metastatic breast cancer

Celebrating caregivers

 

•Each day in October we posted a Fact a Day on Facebook for you to share with friends and spread education and awareness of living with metastatic disease. See the 31 Days of October.

• At the San Antonio Breast Cancer Symposium (SABCS), MBCN was part of a panel that explained clinical trials to other patient advocates and the challenges facing metastatic patients to decide and participate in clinical trials.

•MBCN partnered with Novartis to develop and edit an online magazine for caregivers of metastatic breast cancer patients.

EMPOWERING

 •At our annual conference, a special session on how to advocate on behalf of the metastatic community was developed and presented to attendees.  An “Advocacy Kit,” complete with instructions and tools, is on our website for any patient, family member or supporter to use.

•MBCN has guided, informed and empowered several patients and/or their supporters who want to host an educational and/or fundraising event in their community or local hospital.  See our fundraising section on the website.  MBCN provides free materials for these events.

•MBCN encouraged its members to participate in quality surveys that sought to identify challenges and concerns of patients.

•MBCN provided opportunities for our members to speak out in videos and focus groups, such as these:

Living the reality of metastatic breast cancer

 

Living with metastatic breast cancer – MBC Alliance video

ADVOCATING

• Based on a vision by MBCN, the Metastatic Breast Cancer Alliance was formally announced to the public this year during our Metastatic Breast Cancer Awareness Day campaign.  The MBC Alliance consists of 16 breast cancer organizations who have joined together, driven by a vision to transform and improve the lives of women and men living with metastatic breast cancer.  See my remarks at our first face-to-face meeting.

 •MBCN partnered with SHARE to develop and participate in a webinar for experienced and new oncologists entitled, “Communicating Hope and Trust:  The Patients’ Point of View.”

•MBCN has a seat on the Board of Directors of the National Breast Cancer Coalition.  We advocate on behalf of Breast Cancer Deadline 2020 to find the causes of metastasis and participate in strategic planning and implementation of that goal.

•MBCN served on the Global Advocate Planning Committee to organize and plan sessions for global advocates at the Advanced Breast Cancer 2 Global Conference in Lisbon where doctors discuss and decide on treatment guidelines for the disease.  The advocates discussed common global challenges facing patients with metastatic disease. MBCN reported on the findings of a US survey of metastatic breast cancer patients that asked patients about quality of life issues.

Those are the highlights of 2013 and we are planning an ambitious year for 2014!

If you have questions for us, or ideas you want to share, please leave your comments below or contact me directly at s.mertz@mbcn.org.

Sincerely,

Shirley Mertz

President, Metastatic Breast Cancer Network

Metastatic Breast Cancer News from San Antonio: Stay Tuned

reblogged from Katherine O’Brien’s Ihatebreastcancer blog:

Metastatic Breast Cancer News from San Antonio: Stay Tuned.

Our Feel-Good War on Breast Cancer: MBCN Responds

Tony Cenicola/The New York Times; Gabrielle Plucknette/The New York Times (umbrella, socks, oven mitt); A.J. Mast/Associated Press; Nam Y. Huh/Associated Press; Kyle Kurlick/The Commercial Appeal, via Associated Press; Dr. Scott M. Lieberman/Associated Press

By Katherine O’Brien, MBCN Secretary

Editor’s Note: Peggy Orenstein’s April 25, 2013 article–the cover story for this Sunday’ s New York Times’ Magazine, demonstrates a remarkable depth and thoughtfulness. It is long–but well-worth the effort to read. For those looking for a quick overview, we’ve prepared the following summary and added our observations where appropriate. We hope it will aid readers’ understanding of this important article as well as prompt further discussions. Please share your insights in the comment section below.

Initial Treatment and Recurrence | Journalist Peggy Orenstein wrote “Our Feel-Good War on Breast Cancer,”   subtitled “The battle for awareness has been won. So why aren’t more lives being saved?” Orenstein frames the article within her own breast cancer experience.  Sixteen years ago at 35, Orenstein had a screening mammogram that revealed early stage breast cancer. Her treatment, at that time, was a lumpectomy, as well as six weeks of radiation.

In 2012, at age 52, Orenstein had a nonmetastatic recurrence. She found the lump herself, nine months after her annual mammogram. Because of her prior treatment, Orenstein’s doctor recommended a unilateral mastectomy as well as Tamoxifen.

Early Detection Doubts | In 1996, at the time of her first diagnosis,  Orenstein credited her screening mammogram with saving her life. (“I considered myself a loud-and-proud example of the benefits of early detection,” she writes.) In 2013, following  the cancer’s recurrence, she has changed her mind.

Orenstein  details the US screening mammogram debate. The popular perception,  fueled in part by some nonprofits and pink-ribbon themed efforts,  is that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. According to Orenstein:

“Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. Even catching them “early,” while they are still small, can be too late: they have already metastasized. That may explain why there has been no decrease in the incidence of metastatic cancer since the introduction of screening.”

We Say: This article can be summed up in one sentence: “Early Detection is Not a Cure.” Metastatic breast cancer can occur 5, 10,  15 or even 20 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

Overtreatment | Orenstein explains that  breast cancer isn’t a single disease. But early mammography trials were conducted before variations in cancer were recognized: “before Herceptin, before hormonal therapy, even before the widespread use of chemotherapy.” She then raises the question of overtreatment. Dartmouth’s Gilbert Welch  co-authored a study that estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

We Say: We agree with author and patient advocate Musa Mayer who says: “If we had spent a fraction of the dollars devoted to promoting screening on research to determine which DCIS lesions and tiny invasive breast cancers actually need treatment beyond surgery, and which do not, we’d be way ahead now.” Without knowing which tumors will metastasize, we must treat all of them alike. Worse, “good” mammograms may give some women a false sense of security.

DCIS Dilemma | The article says mammograms and improved imaging technology have resulted in a dramatic increase in the number of people diagnosed with ductal carcinoma in situ (D.C.I.S.),  in which abnormal cells are found in the lining of the milk-producing ducts. DCIS and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. “D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection,” writes Orenstein. “Theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate.”

We Say: One of our few quibbles with this article is its depiction of DCIS. We agree that most DCIS is successfully treated. But  the article cites an expert who says DCIS is “not cancer but a risk factor.”  This statement creates the overall impression is that DCIS is not a big deal. Again, in most cases DCIS does NOT go on to become invasive breast cancer, but unfortunately it can and does.

Confusing Statistics |  Orenstein say that the Komen organization, a mammogram/early detection proponent,  has been accused of citing deceptive five-year survival rates. Since these allegations first surfaced, Komen has stopped using the statistic in question.

We Say: NBCC does an excellent job of addressing this common misperception:

Mortality numbers tell the story more precisely than survival numbers. Screening skews the survival numbers:  The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives,  so it looks like survival for early stage breast cancer is 98 percent.

This is only a 5-year survival number—and includes the 20-30 percent of women who will have recurrence and may die of the disease later. . . Women die of metastatic disease, not primary breast cancer.

Incidence has risen during the past 20 years from 1 in 11 to 1 in 8, it’s now leveling off; mortality has declined slightly but a key point is incidence of stage IV breast cancer—the cancer that is lethal—has stayed the same; screening and improved treatment has not changed this.
Source: http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates

We Can’t Manage What We Don’t Measure: When will we start collecting meaningful statistics on metastatic breast cancer recurrence?  US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between.

As Orenstein notes, 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

• NCI and SEER database record  incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.
• We say that there are 150,000 US people currently living with metastatic breast cancer, but that’s basically a guess.
• We know for sure that 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer  who were previously treated for early stage breast cancer? The cancer registry does not track them—until they die.

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:

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.”

We Say: MBCN’s slogan is “Fighting for Treatments to Extend Life.” So we appreciate Welch’s candor and dedication.  And, if we want to prevent metastasis, we may need to rethink our current approach to clinical trials.  During last year’s annual Metastatic Breast Cancer Conference, NIH’s Dr. Patricia  Steeg made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.”

Know The  Breast Cancer Facts | In her final paragraphs, Orenstein says we may have more breast cancer “awareness” but this “awareness” is fundamentally flawed: “All that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.”

We Say: Nicely done, Peggy. We’d be honored if you would join us at our 2013 Annual Metastatic Breast Cancer Conference, Sept. 21 at MD Anderson in Houston!

Mark Your Calendar: Peggy Orenstein’s article will go a long way in helping people understand breast cancer. As women living with metastatic breast cancer, we are committed to educating people about this disease. This article is a good start, but our reality remains poorly understood. That is why MBCN fought to establish  Oct. 13 as National Metastatic Breast Cancer Awareness Day. 

Let’s Keep Talking: On her Facebook post announcing the publication of this article, Orenstein said she hopes it will change the national conversation about breast cancer. We hope so, too. Peggy started the dialogue. Won’t you help us continue it?

4/29/2013 Editor’s Note: This copy has been revised to remove a disputed statistic concerning Stage II and Stage III metastatic recurrence, material that was directly quoted, as indicated,  from http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates. We will provide additional clarification if available.

4/30/2013 Editor’s Note: As noted above, we removed a disputed statistic we originally quoted from this site after some reader’s questioned its accuracy. [That sentence read in part: For Stage II and III, one-half to two-thirds will develop metastatic disease…] A Google search suggested the statistic came from one of advocate Musa Mayer’s articles. We asked her to comment, and with her permission, share her response. Musa writes:

“I can see I am indeed the source of this statistic, or rather what I wrote in the introductory section of “Silent Voices,” which was written in 2005.  I did get this quote from a text on breast cancer published in 1999, edited by Daniel Roses.  The figures come from an article on the treatment of metastatic breast cancer by Ruth Oratz, an NYU oncologist, written during the era when bone marrow transplants were still being investigated.  I think there may have been an earlier edition.

“There have been a few major advances in the adjuvant treatment of early breast cancer in the last 8 years, principally the use of adjuvant Herceptin, which has reduced recurrence by at least 50% in HER2+ disease, once considered among the deadliest subtype.  The use of adjuvant taxanes with AC regimens in triple-negative breast cancers has also reduced recurrence during these years.  Hormonal treatments have improved in a more incremental way, with the use of the aromatase inhibitors.  So all in all, I believe you can say that for women with non-metastatic disease, the outlook is better than it was even a decade ago.

“Just how much better?  It’s really hard to tell until the numbers mature over time, as we know recurrences can happen later now that more aggressive adjuvant treatment is in use.   The National Cancer Institute’s SEER database shows a steady increase in survival over time, looking at all invasive breast cancers.  For example, 1990 10-year survival was 77%, while in 2000 it was 84%.   But survival figures don’t necessarily represent significant gains, as they are distorted by the overdiagnosis of Stage I breast cancers, which have increased five-fold since the advent of mammography in the 1980’s.

“The numbers are very different in different populations, with low socioeconomic status (hence poor access to care) and African American race predicting higher mortality.  In fact the disparities in survival and mortality have only become greater as more effective treatments are introduced.

“The annual mortality rates for breast cancer, age-adjusted, per 100,000, which DO give an accurate picture of progress, have decreased from 33.1 in 1990 to 27.6 in 2000 to 21.9 in 2010.  That’s a decrease of about one third over 20 years.  Not large, but not trivial, either.”

Source: email correspondence with Musa Mayer

 

The Long View of Breast Cancer Research

Guest blogger: Laura Nikolaides, MS, Director of Research & Quality Care Programs, National Breast Cancer Coalition (NBCC)

Thank you, Laura for allowing MBCN to reblog your remarks on the breast cancer research landscape and on NBCC projects and priorities, given during the opening plenary of 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.

 We have added emphasis and subheadings to some sections. Original blog at: Laura Nikolaides Speaks at Collaborative Summit on Breast Cancer Research in Washington, DC

WHAT ABOUT OUR DAUGHTERS?

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?

TOO MANY QUESTIONS REMAIN UNANSWERED

Unfortunately, I don’t see dramatic change on the horizon with current approaches.

The ACS [American Cancer Society] 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?

NO REAL PROGRESS ON THE METASTATIC FRONT

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.

NBCC’S 2020 DEADLINE TO END BREAST CANCER

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.

SCIENTISTS CAN MEET DEADLINES

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.

PATIENT ADVOCATES AND RESEARCHERS COLLABORATIONS

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.

SEED GRANTS TARGET VACCINATION RESEARCH AND MORE

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.

MORE METASTATIC RESEARCH

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.

EYES ON THE PRIZE

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.

Editor’s note: Shirley Mertz will represent the Metastatic Breast Cancer Network at the Tumor Dormancy Summit in June.

Report from SABCS from a patient advocate

Shirley and I are here in San Antonio at SABCS (San Antonio Breast Cancer Symposium), a premier conference for oncologists and researchers from around the world with an attendance of about 7000 people.

AN INTERNATIONAL EXPERIENCE

It’s my first experience, but Shirley is a veteran and has been here six times. She was surprised and happy to see metastatic presentations throughout the four day conference. “Years ago” she said, “it seemed like metastatic was relegated to the last day.” We have met many people — researchers, oncologists, radiation oncologists and advocates–from the US and internationally– and have had some significant and interesting conversations. Getting a world perspective is particularly eye opening:  A breast surgeon from Iran pointed out to me that metastatic breast cancer  in Iran is not usually treated, since it is a terminal disease. In India, Her2 treatments are rare because of the costs. In Colombia and Brazil, breast cancer advocacy groups exist, but do not usually include metastatic. In many parts of the world, there is still a stigma associated with cancer and particularly breast cancer.

BONE MODIFYING AGENTS

Many of us with bone mets are familiar with bisphosphonate drugs like zometa and xgeva that strengthen bones and are usually taken every few weeks initially and then every couple of months after a year or two.  I did attend a wonderful session on Bone Metastases  and Bone Modifying Agents. Speaker Alison Stopeck MD from University of Arizona in Tucson offered arguments and evidence of the superiority of denosumab (xgeva) over zoledronic acid (zometa) in terms of longer time to a first SRE (skeletal related event) meaning a fracture;  better control of pain and fewer side effects.  So that is something I added to my list to discuss with my oncologist.

HER2: Perjeta and TDM-1

Last night was the most hopeful and exhilarating presentation–a panel of experts on Her2+ breast cancer. Among them were Dennis Slamon, MD from UCLA, the original researcher and 20 year crusader for herceptin research and Kimberly Blackwell, MD from Duke University, one of the researchers on TDM-1 .  The panel of clinician/researchers were enthusiastic about the range of options now available for Her2+ metastatic disease and the excitement was contagious. Dr. Slamon spoke about the potential of  HER2+ MBC becoming a chronic disease in the near future. Dr. Blackwell urged patients to rethink a “cure” for cancer, pointing out that in most fields of medicine, except for infectious diseases like pneumonia or smallpox or tuberculosis, diseases are managed and not cured. People are treated chronically in the US for cholesterol, hypertension, diabetes, arthritis, etc and hopefully HER2+ metastatic breast cancer will soon be included in this list.

ER+ NEWS

Using higher doses of fulvestrant (faslodex) provided longer overall survival without adding to toxicity for metastatic ER+ patients. Results were from the phase 3 CONFIRM trial, so check with your oncologist, if this applies to you.

NO METASTATIC BREAKTHROUGHS

There’s been no groundbreaking announcement or significant finding for metastatic disease, other than the HER2 advances, which were already known. We are expecting the announcement this evening on the final data for OS (overall survival) for perjeta and TDM-1 is expected to be approved in January or February by the FDA.

As someone living with Triple Negative Breast Cancer, I was hoping for more progress reported on novel treatments, but perhaps I’m a bit naive. There is a veritable alphabet soup of pathways and molecules being investigated. When I met Dr. Slamon last night I said, “I hope there is someone out there with your dedication and determination who is studying TNBC.”

“Oh, there is,” he said, “there definitely is.”

Ginny Knackmuhs, MBCN

Beyond Pink

reprinted by permission of the author from http://occupyhealthcare.net/2012/09/beyond-pink/

By Laura Wells, Stage IV Metastatic Breast Cancer Fighter, written  in honor of the women who are fighting and the women we are losing.

When I was first diagnosed with breast cancer, I found it hard to embrace the “Pink Ribbon” and all it stood for. I was not happy to be joining the club, but I was also uncomfortable with becoming an instant advocate for a cause, simply because I would now benefit from it. It seemed selfish and hypocritical.

I began to truly identify with “Pink,” when I recurred at stage IV, for I would have breast cancer forever, be in treatment for life. I finally, fully embraced “pink.”

Ironically, with advanced, metastatic disease, all the great things “pink” stood for, no longer applied to me. I was beyond “prevention,” beyond “cure,” beyond “survivorship,” beyond “pink.”

I learned that many women feel left out, each October, during National Breast Cancer Awareness Month, knowing our stories will not be told. No one will hear of the stage IV women who had died that year, except perhaps, the rare celebrity, or as a matter of statistics.

But, the average metastatic woman will be nowhere. There will be no article about her in the newspaper, no story on the news. There will be no TV special, introducing the world to a lifetime patient, who gets up every day, facing constant tests and treatment forever. We will not hear of the fear that an aching back means bone involvement, which causes a woman to start literally breaking, or the worry that a headache may be caused by brain involvement, and not merely stress. There will be no speakers, at the numerous awareness walks, to tell about conversations with their children, which begin with, “Will you still be here when…?”

The stories will be of “survivors”, women diagnosed “early”, and “cured”. We will hear about famous women who fought the earliest stage cancers and SURVIVED. And the speakers at the walks will promote awareness, and prevention, and survivorship.

I understand the need for this cheerfulness, and these stories of survivorship. I know how important, how necessary it is to be told that, especially in your case, there is hope for a cure.

But, I am beyond that definition of hope. My hope is for clean scans, and new treatments that work so well, I am still alive to attend my daughters’ weddings and meet my grandchildren. I hope to put off as long as possible, leaving behind a husband, who is grieving the loss of his wife.

My breast cancer is no longer just pink. It now, includes gray, the color of nothing – the nowhere land where I live, no longer a survivor, but a fighter, never giving in, never giving up. And, black, the color of death, for surely, one day, my fight will end.

And the problem with “pink” is simply that, with all the awareness it generates, no one is aware of stage IV cancer, the cancer that kills. And no one is prepared to join this club, which is beyond pink, because it will not be spoken of, for yet another year.

Laura Wells lives in Costa Mesa, CA, with her husband and two of her three daughters. She is writing a book about her experiences with metastatic disease and working to raise awareness of the unique needs of metastatic breast cancer patients. She blogs at http://www.Mystage4life.blogspot.com.

Houston, we have a problem: One woman’s mission for MBCAwareness Day

Theresa Tee Palomares is a bundle of energy, a woman on a mission to raise awareness of metastatic breast cancer. She looked at her own community of Houston and noticed there was a problem. Most people do not know about metastatic breast cancer (also called Stage IV) or about October 13 being designated as Metastatic Breast Cancer Awareness Day.  She immediately took action,  found the mayor’s address on the City of Houston website and sent her this letter:
Dear Mayor Annise Parker:

In supporting the month of September with the Teal colors for Ovarian Cancer Awareness and you will probably follow suit with Pink in
October for Breast Cancer Awareness, were you aware that there is one day which is given for Stage IV Breast Cancer women and men-yes, only one day!

Can you please change the lights on that day for us? Maybe Pink and Black or just Black because society has swept us under the rug-you see, less than 3% of Komen funds are given for Stage 4 Metastatic Breast Cancer, the rest is earmarked for awareness, prevention and “PINK” advocacy, but what about us? Please follow this link http://mbcn.org/developing-awareness/category/house-resolution-senate-resolution/#senate  to the MBCN.org website. This is the Senate Resolution enacted in 2009, designating October 13, as National Metastatic Breast Cancer Awareness Day!

Please take the time to support this as 40,000 women and men are dying each year with no cure in sight-no cure at least for the Stage 4 community.

Thank you for your support.

The mayor’s team was very responsive and things moved quickly and smoothly, with only a few small glitches. The City of Houston would only consider a request from a non-profit group and not an individual.  They wanted to know what colors to use. Theresa wasn’t sure that turning off the lights completely would get enough attention, so she worked with our sister organization, Metavivor, and decided to light up Houston with the Metavivor colors of teal, green and pink. October 13 was not available, but the 14th and 15th were open. (Apparently there are many, many organizations that request lighting to symbolize their causes.)

Theresa was not deterred and is now planning on being at City Hall on October 13, 14 and 15, camcorder in hand, discussing metastatic disease with passers-by and distributing MBCN pamphlets and copies of the 2009 Senate Resolution for October 13. “I’ll just tell everyone we’re so pushed into the shadows that we couldn’t even get recognition on our one day – October 13,” she quipped.

Theresa invites all Houston area metastatic patients and supporters to come out and join her at City Hall each evening the weekend of October 13-14-15. You can email her at: theresa.palomares@facebook.com

When asked what she would advise others who want to follow her lead, Theresa said to start in your own community or state.

“If Houston— a large metropolis of over 2 million citywide, 4 million county wide with one of the largest medical centers in the United States —was not aware of October 13th, how many more cities and towns are not aware? ONE PERSON can make a difference, so please be that one person to light the fire.”

Email your mayor, suggest changing the lighting if they use it or suggest passing a resolution to honor October 13 as Metastatic Breast Cancer Awareness Day. If the community has a program on breast cancer, ask to participate in it, and use your voice to educate people about metastatic disease. Email us at mbcn@mbcn.org and we can answer your questions and supply pamphlets, t shirts and information. For other suggestions see our MBCA advocacy kit.

Thanks, Theresa!

A husband’s eloquent letter to the editor for Metastatic Breast Cancer Awareness Day

Judith Christensen and her husband William travelled to Washington DC in 2009 with the MBCN team to lobby Congress for the first National Metastatic Breast Cancer Awareness Day. And, they continue to advocate for greater awareness and understanding of metastatic disease. Judith shared this letter that her husband just sent to their local newspaper–a heartfelt statement of the reality and needs of the metastatic community from a concerned husband. (Doesn’t get any better than that!)

Dear Editor:

I read your column about featuring stories dealing with breast cancer in your newspapers during the upcoming breast cancer awareness month. As you noted most people know someone who has been affected by breast cancer. They certainly are already aware of breast cancer. One in eight women (and a not an insignificant number of men) will be diagnosed with breast cancer. 30% of that group at some point will have to deal with breast cancer that has metastasized. That is the real killer. Cancer in the breast is not lethal; it is when it works its way to other parts of the body (liver, brain, bones), that it becomes fatal.

My wife, Judith, has lived with metastatic breast cancer since her initial diagnosis almost 8 years ago. She is being treated at Dana Farber, participating in a clinical trial for almost 7 years. She is fortunately a statistical outlier since life expectancy averages about two and a half years post metastatic diagnosis. She, like all those with metastatic disease, will be on one form of treatment or another for the rest of her life. There is no time free from treatment. There is no cure.

In 2009 we worked with others in the metastatic breast cancer community to raise awareness about this dark corner of the larger breast cancer community. Working with members of congress we were able to have October 13 designated as National Metastatic Breast Cancer Awareness Day. I have attached a copy of the Resolution as passed by the United States Senate for your information and use. Many state and local governments (including here in Plymouth) passed similar resolutions.

It is so important that this group of people dealing with metastatic disease not be isolated or ignored. Additional research funding and funding for treatment should be focused on the needs of this group. A lot has been done to raise awareness of breast cancer in the broadest sense. More needs to be done to deal with the deadly and fatal side of the disease. I would urge you to focus some of your efforts on raising awareness about metastatic breast cancer during the month of October. It is a job that needs doing.

Thank you for focusing on the issue of breast cancer. Please take it a step further and deal with this critically important issue as well.

William Christensen

26 Forest Edge

Plymouth, MA 02360

(508) 209-1011

thechristensens26@comcast.net

Dear Fran Visco (President of NBCC)

Metastatic Breast Cancer Network applauds and supports the efforts of National Breast Cancer Coalition (NBCC) to establish a 2020 Deadline to End Breast Cancer. In your recent op-ed piece in the Boston Globe,  you laid out a cogent argument for why we need to approach breast cancer with a deadline and a co-ordinated, bold plan, reminiscent of President Kennedy’s challenge to put a man on the moon in a decade. We know all too well the successes and failures of breast cancer treatment, research and advocacy. We live from scan to scan and enthusiastically accept incremental advances in treatment because that is our only choice. We agree that we need a  plan that attacks the problems of “organizational and systemic dysfunction that discourages bold new ideas in favor of safe research and predictable results.”

As a voice for the metastatic breast cancer community, we particularly liked your clear statement of goals for the 2020 Deadline campaign:

• preventing people from getting breast cancer in the first place and
• preventing those who get it from dying of it.

Previously this goal had been stated as “preventing metastases,” which left many of us wondering if we were included or not. We already have mets, so it didn’t seem that prevention was going to work for us. Some argued that preventing metastases meant preventing their further spread, but it was still an unclear and contentious issue.

We thank you for clarifying this with a simple phrase: preventing those who get it from dying of it. No doubt there that we are included.

As an organization, Metastatic Breast Cancer Network urges all of our members to sign the petition and visit your website to find out how to support the campaign in other ways.

Thank you. We look forward to working together with NBCC.

Michele Przypyszny – President

Metastatic Breast Cancer Network (MBCN)

I have a confession to make…

I have a confession to make. Before I was diagnosed with metastatic breast cancer, I would hear that someone in my community had died from breast cancer and I would think: “It’s too bad they didn’t  get annual mammograms. It’s too bad they ignored early detection practices. It’s too bad they died, but it’s really their own fault.”

I was diagnosed in 1992 with early stage cancer–stage 0 or DCIS–the earliest you can have. I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. I never embraced the pink survivor label because I never felt I had gone through that much–no chemo, no radiation, just some disfiguring surgery followed by a saline implant, which was supposed to simulate a real breast.

I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of  annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me.

Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a failproof screening test. My education in breast cancer began the day I was diagnosed with mets and I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone.

The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with “the cure”.

When life throws us some crisis, most people like to see it as a challenge and find meaning in their travails. We are by nature optimists, so if you lose your job, you will find another and maybe a better one or in a different field than you had worked previously and never would have explored without the rude shove out the door. The same happens with disease. Testimonials abound from some that they are better people than they would have been without the heart attack, the cancer, the terrible car accident.  They realized their life had the wrong priorities, that they weren’t appreciating every single day. And people do change. They meditate, they volunteer, they mend bad relationships. While I acknowledge that can happen, I never want to characterize cancer as a gift. I don’t think I need to endure treatments and side effects the rest of my life just to be a better person.

But I’d like to believe that I have stage IV metastatic breast cancer for a reason:  to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the “guilt” myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.

October 13 is Metastatic Breast Cancer Awareness Day–one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring.

I have a confession to make. I have metastatic breast cancer and 40,000 women and men dying every year from breast cancer is unacceptable. It’s too bad that the breast cancer message has been skewed. It’s too bad that few know that an estimated 25-30% of survivors will become metastatic. It’s too bad that there is not enough money going to co-ordinated, effective research on metastases.

It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out. What will you be doing?

Ginny