Tag Archives: Metastatic Breast Cancer Network

The Biggest Challenges Facing Metastatic Breast Cancer Research

Kudos to Julia Belluz, Brad Plumer, and Brian Resnick for their wonderful July 2016 Vox article, “The 7 Biggest Problems Facing Scientists According to 270 Scientists.” As one of my nephews would say, “Nailed it!”

The authors surveyed  270 scientists all over the world, including graduate students, senior professors, laboratory heads, and Fields Medalists. In a nutshell, they learned  that scientists’ success often isn’t measured by the quality of their questions or the rigor of their methods. It’s instead measured by how much grant money they win, the number of studies they publish, and how they spin their findings to appeal to the public.

Here are some of the seven points that really resonated with me, a woman living with Stage IV breast cancer who is relying on research to help me–or failing that–my family, friends and well, everyone. Please note that these points as I am relaying them are in reverse order of importance.

WHERE ARE THE CELEBRITY MOLECULAR BIOLOGISTS? Point No. 6  hit home for me: Science is Poorly Communicated to the Public. “If I could change one thing about science, I would change the way it is communicated to the public by scientists, by journalists, and by celebrities,” writes Clare Malone, a postdoctoral researcher in a cancer genetics lab at Brigham and Women’s Hospital.

Amen! The general public has no idea that breast cancer represents something that went wrong at the cellular level. It is not a punishment for eating too much sugar or too little kale. It is not God’s way of sending you a wake-up call. It means that something has gone wrong with some of your 30 trillion cells and they are growing out of control. The onset and progression of cancer is due to multiple dysregulated proteins and cellular pathways.

But according to musician and amateur molecular biologist Melissa Etheridge, “Cancer is just a symptom of our bodies being out of balance and the cure is to understand health. It’s to understand our bodies and our spirits—our souls—better. That’s the cure.”

 Melissa Etheridge was diagnosed with Stage 2 breast cancer in 2004. She had a lumpectomy, 15 lymph nodes removed and then  five rounds of chemotherapy and radiation. Apparently this is the basis of her expertise.

In her spare time, Etheridge dabbles in genetics, too.  In a 2015 she told AARP: “I have the BRCA2 gene but don’t encourage women to get tested. Genes can be turned on and off. I turned my gene on with my very poor diet.”

The article drew the ire of many, including a non-profit that advocates for those with hereditary breast and ovarian cancers. “Everyone is born with two copies of both the BRCA1 and BRCA2 genes, which play essential roles in preventing cancer,” wrote Sue Friedman, executive director and founder of FORCE. ” Individuals born with a change or mutation in one of these genes bear a higher lifetime risk of breast, ovarian, and other cancers than those without a mutation not because the gene is ‘turned on’ but because they lack a working copy of one of the genes involved in preventing cancer development.

Attention journalists–some celebrities are knowledgeable about their conditions–but please give some thought as to how these influential figures’ words and actions will be received. Angela Jolie, for example, seems well-informed about why her personal family history made a prophylactic mastectomy and oophorectomy a logical choice–for HER. However, please take the time to point out that MOST cancer is NOT hereditary–90 percent of ALL cancers  are considered sporadic, meaning they just happen. So in other words, the vast majority of us–in looks or genes–are not like Angela Jolie at all.

Another plea: Please remember those who won’t “kick cancer’s ass.” It’s not like we did something wrong or we didn’t try hard enough or we blew off doctors’ appointments. We are living with a chronic, progressive and ultimately fatal disease. Don’t treat us like losers or pretend we don’t exist. Think outside your pink ribbon expectations.  Breast cancer is second only to heart disease and lung cancer as the leading cause of death in women. Where are your lung cancer special sections? Pancreatic cancer is a devastating diagnosis–there is no early detection for this disease. Like ovarian cancer, it is a silent killer–where are those stories?

As someone living with the fatal form of breast cancer, I am so tired of self-appointed experts–celebrity and other wise–expounding upon a disease that they know little about. I am a member of United Airline’s MileagePlus program. I have been a passenger on many flights.  Amazingly, I have no insights on the science behind keeping a plane aloft, how to fly a plane or the latest pilot union grievances. Journalists: When interviewing a celebrity, please ask yourself, “What makes this person an expert? What is their understanding of basic human biology let alone the disease in question?”

MUST BE THE MONEY–the authors noted that US academic researchers need outside grants to pay for their salaries, assistants, and lab costs.  University funding is paltry–many faculty are expected to cover at least 75 percent of their salaries with grant money. Grants typically expire after three years–far too short a time to supply the kind of research needed for meaningful results in studying metastatic breast cancer. Research can take decades.

Our federal government is the largest source of cancer research funding and as Vox reports, “that pool of money has been plateauing for years, while young scientists enter the workforce at a faster rate than older scientists retire.” You can bash all the breast cancer non-profits all you want for funding more “awareness” than research. But where are the protests, the outrage over the federal government slashing research funding? The Moonshot is all well and good, but it can’t eradicate YEARS of federal penny-pinching and indifference when it comes to research. As Belluz, Plumer and Resnick observe:

Take the National Institutes of Health, a major funding source. Its budget rose at a fast clip through the 1990s, stalled in the 2000s, and then dipped with sequestration budget cuts in 2013. All the while, rising costs for conducting science meant that each NIH dollar purchased less and less. Last year, Congress approved the biggest NIH spending hike in a decade. But it won’t erase the shortfall.

The consequences are striking: In 2000, more than 30 percent of NIH grant applications got approved. Today, it’s closer to 17 percent. “It’s because of what’s happened in the last 12 years that young scientists in particular are feeling such a squeeze,” NIH Director Francis Collins said at the Milken Global Conference in May.

 James Watson was 25 years old when he co-discovered the double helix structure of DNA in 1953. Watson benefited greatly from the work and mentorship of older colleagues. Where are the James Watsons, Frances Cricks and Rosalind Franklins of 2016? Sadly, they are probably going into more lucrative fields–and they probably aren’t staying the US, either.

There is actually a non-partisan group dedicated to  “seeking the immediate restoration of funding for NIH followed by steady, predictable budget support in the future to enhance lifesaving research for patients around the world.” Medical research in the United States is in crisis according to ACT for NIH. “Adjusted for inflation, NIH receives nearly 19 percent less funding than it did in 2003. Because of this decrease in funding, NIH must reject research proposals that could lead to future discoveries of cures and treatments for cancer, Alzheimer’s, heart disease, stroke, diabetes, and other diseases. Our brightest young scientists are turning to other careers, and  other countries now threaten our global leadership in biomedical research.”

Again, where is the groundswell of outrage?

Global SpendingPUBLISH OR PERISH–Researchers are under enormous pressure to publish–unfortunately, the need to amass credentials can sometimes lead to the publication for the sake of publication–we end up with white-bread-and-mayonaisse studies that will ultimately help no one–except the authors’ careers. Metastatic breast cancer research creeps along at a tortoise-like pace–meanwhile these MBC researchers are being lapped by hares, eager to advance their careers. Sometimes researchers–perhaps even unconsciously–may create studies that are heavy on hype but slim on actual meaningful results. Says Vox:

The consequences are staggering. An estimated $200 billion — or the equivalent of 85 percent of global spending on research — is routinely wasted on poorly designed and redundant studies, according to meta-researchers who have analyzed inefficiencies in research. We know that as much as 30 percent of the most influential original medical research papers later turn out to be wrong or exaggerated.

The Vox article does not specifically address metastatic breast cancer research funding. But the Metastatic Breast Cancer Alliance (MBCA) has identified the following roadblocks to MBC research:

 Funding

  • MBC researc is  underfunded. MBC-focused research made up only 7% of the $15-billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. Specific scientific areas are understudied. The field of MBC research is relatively small. 
  • Overall cancer research is also underfunded (0.1% of the Federal budget.) Other areas receive more funding including the military, farm subsidies and education.

Matched Tissue Samples

  • To advance MBC research, better access to tissue is needed, including the primary tumor and interval blood samples collected and banked between the primary and development of the recurrent metastatic tumor.
  • MBC tissue from different populations needs to be studied (e.g., MBC in younger, premenopausal women vs. MBC in older women).

Model Systems

  • The previously available laboratory models for MBC research were discouraging but in 2013 and 2014, several laboratories have demonstrated interesting MBC models.
  • MBC models need to be validated and standardized across laboratories.

Academic-Initiated Clinical Trials

  • Academics have not focused enough on MBC (in basic research, clinical trials or cooperative groups), although focus is rapidly shifting to MBC as a priority
  • MBC research is complicated, costly and time-consuming (e.g., early breast cancer studies in animals can be two or three months; MBC animal studies can take up to 9 months to run a single set of animal experiments).
  • Lack of academic involvement has resulted in MBC trials being led by the pharmaceutical industry and business interests, including correlative science studies.

Epidemiology

  • We need to better understand the epidemiology of MBC. How many patients have a recurrence? How many of these represent a metastatic recurrence? What are their treatments and responses? How long do they survive? We don’t know because our national cancer registry (SEER) does not track metastatic breast cancer recurrence–we only have incidence, initial treatment and mortality data. Very few people present with MBC as I did (10% or less). Unfortunately, this isn’t the  first breast cancer rodeo for most people with a Stage IV diagnosis. But we don’t have recurrence statistics. You cannot manage what you do not measure.

 

I was diagnosed with MBC in 2009. Over that time, US cancer research funding

I was diagnosed with MBC in 2009. Over that time, US  cancer research funding dropped by about 20 percent. Come on! We’re counting on you, Congress! Give NIH the support it needs!

I am proud to be a board member for the Metastatic Breast Cancer Network (MBNC). We are a founding member of  the Metastatic Breast Cancer Alliance (MBCA). The Alliance is led by advocates and, since forming with 15 groups in October 2013, has grown to be the largest breast cancer alliance in the U.S. with more than 40 of the leading cancer charities, advocacy groups and individuals and pharmaceutical industry partners represented. The Alliance is working to address all of the above questions. This work is hardly glamorous–there are many meetings, conference calls, committee work and countless hours spent writing and reviewing documents and other tasks. Most members of the Alliance are busy with their regular job duties–as someone living with the disease, I am beyond grateful for their efforts. As you can tell from the Vox article, we have our work cut out for us.  It’s not easy, but we are making a difference and will continue to do so!

 

 

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BREAKING: Bill Keller is a Cotton-Headed Ninny Muggins…

Bill Keller’s NYT op-ed piece on “Heroic Measures” (January 12, 2014)  misrepresents what metastatic breaBillSignst cancer is and how it is treated.

Keller is writing about Lisa Bonchek Adams–a 40-something woman with MBC who tweets and blogs her experiences with the disease (as well as humorous tidbits about her kids, dog, etc.).   While it is true that Adams was diagnosed with early stage cancer seven years ago, she has not been in a seven-year “public cage fight with death,” as Keller writes.

Keller’s editorial suggests that Adams is somehow pulling out all the stops with her metastatic breast cancer treatment. This isn’t true–Adams is getting standard of care–the same as any of us would get. She did enroll in a clinical trial (and washed out of it) but it was NOT the last-ditch effort Keller paints it as–she still has some arrows left in her pharmaceutical quiver.

When Adams was diagnosed with metastatic breast cancer (MBC) a little over a year ago, it was then that her cancer became incurable–but still treatable—for now. For now, Adams is LIVING with metastatic breast cancer, as are 150,000 other US people.

As Adams correctly told Keller, the course of the disease can involve many periods of relative stability, interspersed with serious complications and side effects. To live with MBC is to embrace uncertainty—you don’t know if a drug will work, how long it will work and how you will tolerate it. You just take it one day at a time. There is no wrong or right way to live with metastatic breast cancer–there is only the way that works best for YOU.

As someone with MBC, Keller’s ignorance of the MBC facts of life is frustrating. I hope this video will set people like him straight:

http://animoto.com/play/pp9bg5hNO4Y1l5WJAfVcWA

….and here’s the MBCN blog I collaborated with Ginny Knackmuhs on:

http://mbcnbuzz.wordpress.com/2014/01/13/bill-kellers-misguided-nyt-oped-piece-mbcn-responds/

ETA: For those looking for the PowerPoints featured in the video:

“MBC 101,”  PowerPoint (RS Miller, 2011): http://mbcn.org/images/uploads/RSMiller_MBC101.pdf

“Why Mets Matter,”  PowerPoint (M Mayer, 2011) http://advancedbc.org/files/Mayer_NBCC_2011_0.pdf

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Next Time Won’t You Sing Along With Me: Metastatic Breast Cancer Theme Songs

I recently attended the national meeting of a breast cancer advocacy group. I had never attended this annual event, and overall, I liked it. The speakers were good and the attendees were attentive and enthusiastic. There was even a special session on metastatic breast cancer.

The event concluded with a reception in a hotel ballroom featuring a DJ who played all the block party favorites: The Electric Slide, YMCA and the group’s unofficial theme song, “I Will Survive.”

None of the metastatic breast cancer events I have attended featured dancing or music–it’s  like “Footloose” only starring people with cancer vs. small-town high school kids. In the weeks following the advocacy meeting, I found myself pondering the theme song question–if there WAS music at an MBC event, what would our signature song be?

My family’s “traditional” party song is Kool & The Gang’s “Celebration,” which I guess is from about the same era as “I Will Survive.” I think it was played at one of my cousin’s wedding reception in the early 1980s and it just kind of stuck. It’s a good song, but surely there must be something more recent, something that hasn’t been played to death (so to speak)?

I thought of One Republic’s “We’re Marching On.” I think it’s pretty good–a kind of crowd anthem with a driving beat. But I’m not sure a lot people in the typical MBC demographic would know this one.

I like Gym Classs Heroes’ “The Fighter.” (Sample lyric: Here comes the fighter / That’s what they’ll say to me, say to me, say to me /This one’s a fighter.) That’ s a good song, too, but it’s not really made for dancing.

There’s also Givers’ Up, Up, Up. It has the benefit of having been featured on “Glee,” which means more people would probably know it. On the other hand, it’s also featured in this lame commercial for Lipton ice tea. Plus, let’s face it, the song  probably is really about taking mind altering drugs.

But then as I prepared this post for MBCN’s blog, I had an epiphany. It happened as I reviewed the results of a  recent survey of 1,273 women in 12 countries. Nearly two-thirds (63%) of the women surveyed said they “often feel like no one understands what they are going through” while two in five women said they “feel isolated from the non-advanced breast cancer community.”

Sometimes, yes, I do feel like that myself. But to be honest, I also felt alienated from the rest of the world during much of the 1980s when I was a teenager, a feeling captured perfectly in this1984 smash hit.

Feel free to join in:

OH WE’RE NOT GONNA TAKE IT
NO, WE AIN’T GONNA TAKE IT
OH WE’RE NOT GONNA TAKE IT ANYMORE

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Still In Search of the Next Metastatic Breast Cancer Celebrity Spokesperson…

As I read Angelina Jolie’s New York Times article, I thought, “Wow, a celebrity spokesperson for hereditary breast and ovarian cancer! That will really focus some attention on this issue!” And then I compared Jolie’s statements to those of other celebrities who have shared their own experiences with metastatic breast cancer.
This didn’t take very long because there aren’t any.

Edwards made her metastatic announcement in 2007.

Elizabeth Edwards is probably the closest we’ve come to having a high-profile spokesperson –certainly she is the only one I can think of since my own metastatic diagnosis in 2009. I wouldn’t care to be a celebrity let alone an ill celebrity in the national spotlight. I can’t comment on Edwards’ personal or political life. But I am so grateful that she talked about having metastatic breast cancer. I hope Cate Edwards and her siblings know what that meant to others living with the disease.

I remember coming across an article CNN’s Shahreen Abedin wrote in 2007. It was called “Surgeon Offers Answers on Metastatic Breast Cancer.” It was straightforward and, because Edwards had bone mets like me, I learned a lot about my specific metastatic issue.

CNN: What are survival rates for Stage IV metastatic breast cancer?

Dr. Rache Simmons: It depends on where the cancer is located. Patients can do very well for years if it’s isolated just to the bone. If there is a speck on the lungs or other organ that turns out to be cancer, that could mean a much worse prognosis, a much shorter life expectancy.

The bone is often the first place to spread to with breast cancer. Most breast cancer systemic recurrences (meaning the kinds that spread to the rest of the body) happen in the next two years after the first time the cancer is diagnosed. The next plateau is within five years. After that, it’s very rare to have recurrences. However, recurrences do still happen, even as late as 10 years later. But that’s very unusual.

For patients with small cancers and negative lymph nodes with no evidence of disease spread at the time of diagnosis, still about five to 10 percent of women end up developing metastatic disease.

If the recurrence happens later in the five-year period after diagnosis, rather than earlier, that’s a good sign; the patient will probably have a better response to the treatments. If the recurrence happens very soon after diagnosis, like six months, a year, or 18 months, then patients tend to do worse.

CNN: What would the standard treatment be once recurrence is diagnosed?

Simmons: Probably hormonal therapy. Mainly anti-estrogen types of treatments — like Tamoxifen or aromatase inhibitors. Sometimes chemo is an option, either in addition to or instead of hormone therapy.

Sometimes radiation therapy to localized area, especially if the patient is in pain.

To find it accidentally, when the person is having no pain, is a very lucky thing. Usually what happens is a patient develops a pain and then gets X-rays — and then they find it. [The Q&A continues here.]

The article gave me a lot of  hope when I really needed it.

I will never forget the day in 2009 when I found out I was of one of 155,000 US people living with metastatic breast cancer. The oncologist said my breast cancer had spread to my lumbar vertebrae:  “Hopefully the disease will remain under control for a long time although an ultimate cure is probably unattainable.”

Most people with metastatic breast cancer have previously been treated for early stage breast cancer. Not me–I was Stage IV from my initial diagnosis, something that happens to between 6% and 10% of those living with MBC.

My cancer center’s library had two shelves of breast cancer pamphlets, mostly for women with early stage disease. One had chapters such as “Why You Should Get Prompt Attention,” and “Not All Lumps Are Cancer.”

Not very helpful to my particular situation.

Prior to my metastatic diagnosis, when it was thought I probably had Stage III breast cancer, my would-be surgeon gave me an 85-page booklet called “Breast Cancer: Treatment Guidelines for Patients.”

I am a Phi Beta Kappa graduate of the University of Illinois. I would rank “Breast Cancer: Treatment Guidelines for Patients” somewhere between “Beowulf” and James Joyce’s “Ulysses” in the annals of Massively Complex and Confusing Literature. Beyond the dense text, it also had flow charts seemingly inspired by a Chinese menu: Pick One From Each Column: Type, Tumor Size, HER2 and Receptor Status, etc.

Eventually, I came across “Diagnosis: Metastatic Breast Cancer…What Does It Mean For You?”

This slim MBCN brochure promised “up-to-date facts — demonstrating that today, more women and men with metastatic breast cancer are living longer, productive lives.”

The brochure featured 15 questions and answers about metastatic breast cancer. Question No. 1 was: “Am I going to die?”

This was certainly a top-of-mind question for me.

“Though you may be concerned by statistics you have heard, keep in mind that every individual is unique,” advised the MBCN brochure. “Because statistics are based on the general population, they do not reflect the experience of any one individual. Each person brings to the table a unique set of characteristics that influence her or his experience with breast cancer. In addition, no really accurate statistics predicting survival for metastatic breast cancer patients are available today.”

Those few sentences gave me a lot of hope.

“There is something in our national psyche that makes the diagnosis of cancer in a celebrity something more important,” noted ACS’ Dr. Len Lichtenfeld in 2008 following Christina Applegates’s revelation she’d had a BMX. ” They rise above the rest of us when sadness impacts their lives, and for many of us their disease becomes our disease…”

I hope Angela Jolie’s article will help someone else wrestling with hereditary breast and/or ovarian cancer issues.

In one intervew Edwards touched on what she termed “the competing responsibilities” of being in in the public eye with metastatic breast cancer:  “One [responsibility] is to say to people with breast cancer, ‘This is really hard what you’re going through. Believe me, it’s hard for everybody. … This is perfectly normal to feel exhausted or perfectly normal to feel irritated sometimes, and don’t think less of yourself because those are your feelings.’ On the other hand, we don’t want to be treated as if we’re invalids. So when I’m feeling lousy, I don’t feel like I have the same permission to share that, but I do want people to take care of us — to take care of my sisters, in a sense.”

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Newspaper Claims Most Breast Cancers in the US Are Cured: We Beg to Differ

From the original article: Vanderbilt University researchers are learning why some breast cancers are resistant to treatment. Source: http://www.tennessean.com

Update 4/24/2013 :
Reporter Tom Wilemon  invited me to call him. I appreciated his outreach and we did speak. I hope to continue the dialogue.
–KOB
Editor’s Note: Carol Marrero is an MBCN volunteer from Brentwood, TN.  “I read this article in today’s Tennessean newspaper and the ending really pissed me off,” she told myself and fellow MBCN board member Ginny Knackmuhs. “My friend Pam tells me that Dr. Arteaga is one of the top BRCA researchers in the world. So, I was even more surprised by his quote.”

We urged Carol to respond to the reporter, Tom Wilemon, to express her concerns and to ask him to do a follow up article or at least clarify the context of the original article. Wilemon declined. We present Marrero’s letter followed by  Wilemon’s reponse and welcome your thoughts.

Tom, 
In your April 23 article, “Scientists Try to Unravel Breast Cancer Mysteries,” you have perpetrated some egregious errors. The most glaring concerns this quote from Dr. Carlos  Arteaga of Vanderbilt, president-elect of the American Association for Cancer Research:

“Most breast cancers in the U.S. are cured today,” he said. “This is a disease for which we have many standard therapies that work. Of course, there’s the unfortunate patient for whom those therapies stop working. The advice I would give that individual is to seek a clinical trial — seek a center where they are trying to do cutting-edge research.”

There are currently 150,000 U.S. people living with metastatic breast cancer. Metastatic breast cancer remains incurable in 2013. Every year, metastatic breast cancer claims 40,000 lives. Now, does that sound like “most” to you?

Dayton, Ohio, has a population of 142,148. Imagine if every single citizen of Dayton had metastatic breast cancer and were therefore NOT CURED.

Niagra Falls, NY, has a population of 50,086.  Imagine if the entire NOT CURED population DIED EVERY SINGLE YEAR FOR THE PAST TWO DECADES.

Again we ask, does that sound like “most” breast cancer to you?

We are living with metastatic breast cancer. We will be on some form of treatment for the rest of our lives. When one stops working, we will go to the next one. One of us [MBCN volunteers] is “fortunate” in that her subtype of breast cancer has many treatment options. People with metastatic triple negative breast cancer, inflammatory breast cancer and other less common types, do in fact NOT have many standard therapies, let alone therapies that WORK.

Dr. Arteaga further references the “unfortunate” patient for whom standard therapies stop working and suggests he or she seek a clinical trial. A clinical trial should NOT  be considered some kind of last ditch effort for the truly hopeless as one might infer from this statement. Many breast cancer patients—early stage and metastatic alike–participate in clinical trials. They are not exclusively for someone who has exhausted all other options. Indeed, in some cases, a patient should go with a clinical trial–even if there are standard options available. It’s a case by case decision.

“Cured”  is word to be used with caution when discussing any kind or stage of breast cancer. Until a person with breast cancer dies of something else, there is always a chance breast cancer can come back. Breast cancer, sadly, is not like most other cancers in this regard. Lance Armstrong is cured of testicular cancer. But someone like Susan Henson of Goodlettsville, who was diagnosed with triple negative type cancer four years ago, cannot truly ever know she is cured of breast cancer.

Unfortunately, for about 20% of women like Susan Henson who have been treated for early stage breast cancer, will have a metastatic recurrence. (Triple negative breast cancer can be more aggressive–without knowing the facts of Henson’s case we can’t make any definitive statements.)

Early detection is NOT a cure. In general, the reason more people are surviving breast cancer is  we have better imaging technologies. The  average size lump found by first mammogram is about the size of a dime (~1.5 cm) but even tumors as small as pencil erasers can be seen.

The real problem is we don’t know WHAT we are looking at.

We don’t know  WHY some tumors spread beyond the breast.

We don’t know HOW to stop metastatic growth.

We are seeing more and more breast cancers earlier and earlier. In some cases, people are overtreated: It’s the oncological equivalent of using a shotgun to kill an ant. Many women may be diagnosed and treated for a cancer growing so slowly it might never have caused any symptoms or threatened their lives,
Perhaps you have misquoted Dr. Arteaga. We urge you to do a follow up piece correcting the misconceptions your article created. We further urge you to read this New York Times article from January 18, 2011:

While perceptions of the disease may have changed in recent years, the number of deaths it causes has remained fairly static, said Dr. Eric P. Winer, director of the breast oncology center at the Dana-Farber Cancer Institute in Boston.

“All too often, when people think about breast cancer, they think about it as a problem, it’s solved, and you lead a long and normal life; it’s a blip on the curve,” he said. “While that’s true for many people, each year approximately 40,000 people die of breast cancer — and they all die of metastatic disease. You can see why patients with metastatic disease may feel invisible within the advocacy community.”

Amen, Dr. Winer, amen.

Sincerely,

Carol Marrero
MBCN Volunteer,
Brentwood, TN

Here is Tom Wilemon’s  response:

Carol,

Reporter Tom Wilemon

Thanks for reading The Tennessean and taking the time to send me an email. Dr. Arteaga was speaking of breast cancers in general , not metastatic breast cancer. I can assure you his heart is in the right place and his team is doing all it can to find new therapies for all types of breast cancer. And yes, he and other researchers are working to understand the WHAT, HOW and WHY.

I transcribed my interview from a recording and then wrote the article. I do not believe I misquoted him. I’ve not heard complaints from Vanderbilt about the article. He was simply seeking to further clarify the point that not all breast cancers are the same. Some types do have accepted treatment regimens that can work – and even cure.

Tom Wilemon

Reporter

The Tennessean

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Highlights from MBCN’s 2012 Chicago Conference on Metastatic Breast Cancer

Canadian friends Penny Overes, Catherine Spencer and
Danielle Smith were among the 200+ attendees. Alberta represent!

MBCN’s 6th Annual National Conference (“Moving Forward With Metastatic Breast Cancer,”) took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago. In a few weeks, videos and presentation handouts will be posted at MBCN.org. In the interim, here are some highlights from selected breakout sessions, from attendee Pam Breakey. Pam is a long-time participant on the BC.Mets.org site and, as you will see, takes wonderful notes.
Part One: General Sessions

Part Two: Selected Breakout Sessions

We were honored to have Medical Lessons blogger and Atlantic correspondent  Elaine Schattner join us. Dr. Schattner is a trained oncol­ogist, hema­tol­ogist, medical edu­cator and jour­nalist who writes and speaks on med­icine. Her views on health care are informed by her expe­ri­ences as a patient with sco­l­iosis since childhood and other con­di­tions including breast cancer. Her work has appeared in Slate, the New York Times, Sci­en­tific American, Cure Mag­azine and the New York Observer. Read  her great article for the Atlantic here.

MBCN Honors Dr. Pat Steeg’s Dedication to Metastatic Research With the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award

MBCN board member Shirley Mertz presented the award to Dr. Pat Steeg.

In other conference news, MBCN presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award. “For the last 20 years, in her laboratory at the National Cancer Institute, in Bethesda, Maryland, Dr. Patricia Steeg has been researching how cancer cells from the primary tumor in the breast travel to vital organs, in particular the brain,” said Shirley Mertz, MBCN board member and prominent patient advocate. “Dr. Steeg identified the first cancer suppressor gene and has done pioneering work on brain metastasis. Although metastatic research is difficult and involves long and complex experiments, Dr. Steeg remains undeterred. She exerts strong leadership in the research community nationally and internationally.”

Prior to accepting the award, Steeg gave a presentation on “Research on Treatment to Contain Metastatic Growth.” The researcher 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.” Steeg referenced a
perspective piece, “The Right Trials,” she wrote for Nature this past May.

“The proposal I’ve put forth should apply to a number of different cancers, particularly those where the majority of patients are diagnosed before they have full-blown metastatic disease, or if they have limited, treatable metastatic disease,” Steeg told NCI Cancer Bulletin this past June. “One could imagine applying this to prostate, bladder, and colon cancers.”

Don’t Miss These Awesome Photos:

But wait! There’s more! Awesome conference photographs, courtesy of Ellen Averick Schor are Here.

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NCI’s Pat Steeg: Let’s Redesign Clinical Trials to Test Therapies That Prevent Metastasis

More than 200 people with metastatic breast cancer and their supporters came to Chicago for the 2012 National Metastatic Breast Cancer Conference held on Oct. 13th, National Metastatic Breast Cancer Awareness Day. Photo credit: Ellen Schor

As hundreds of metastatic breast cancer patients offered a standing ovation, the Metastatic Breast Cancer Network (MBCN) presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award. The award was given at MBCN’s 6th Annual National Conference which took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago.

“For the last 20 years, in her laboratory at the National Cancer Institute, in Bethesda, Maryland, Dr. Patricia Steeg has been researching how cancer cells from the primary tumor in the breast travel to vital organs, in particular the brain,” said Shirley Mertz, MBCN board member and prominent patient advocate. “Dr. Steeg identified the first cancer suppressor gene and has done pioneering work on brain metastasis. Although metastatic research is difficult and involves long and complex experiments, Dr. Steeg remains undeterred. She exerts strong leadership in the research community nationally and internationally.”

 

Shirley Mertz with NCI’s Pat Steeg

The award—which includes a monetary grant to be used for metastatic research—is named after MBCN’s former President, Ellen Moskowitz, and former Vice-President, Suzanne Hebert.  “Ellen and Suzanne worked side by side for five years to establish MBCN as the voice of people living with metastatic breast cancer,” said Mertz. “Together, they pushed for change and inspired many to take action to promote awareness and provide education for metastatic breast cancer patients and professionals alike.”

The MBCN board wanted to honor these remarkable women by recognizing a scientist and researcher whose persistent leadership and work embodies what Ellen and Suzanne fought for—research about metastatic disease that could result in treatments to extend the lives of metastatic breast cancer patients.

Mertz presented the award to Steeg “with great appreciation and anticipation for the future…along with our deep thanks for your dedication and persistence in metastasis research.”

Prior to accepting the award, Steeg gave a presentation on “Research on Treatment to Contain Metastatic Growth.” The researcher 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.” (Steeg referenced a perspective piece, “The Right Trials,” she wrote for Nature this past May: http://www.nature.com/nature/journal/v485/n7400_supp/full/485S58a.html)

Conference chair and MBCN board member Deb Tincher noted that many attendees cited Steeg as their favorite speaker at the 2012 event. “One person described Dr. Steeg as ‘spectacular and passionate’ and we certainly agree,” Tincher said. “We also agreed with the rest of her comment: ‘Dr. Steeg is in the trenches helping us and it showed!’ We are proud to recognize and support Dr. Steeg’s work.”

“I’m glad Dr. Steeg is on our side!” said one metastatic breast cancer patient at the 6th Annual MBCN Conference.

 

ABOUT MBCN’s ANNUAL CONFERENCE

MBCN held its first conference at Memorial Sloan-Kettering Cancer Center in 2006. Subsequent conferences have been held at M.D. Anderson, Dana-Farber, Indiana University’s Simon Cancer Center and at Johns Hopkins.

 

ABOUT THE METASTATIC BREAST CANCER NETWORK

MBCN is a national, independent, nonprofit, patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer. MBCN was founded in 2004 by Jane Soyer and Nina Schulman. When diagnosed with advanced breast cancer, they experienced feelings of isolation from the very groups established to provide support. They felt the stigma of being a “failure” in the breast cancer community. Their belief that cancer cannot be viewed as a disease from which one is either a “survivor” or to which one has succumbed, fueled their desire to advocate for change.  See www.mbcn.org.

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Spread the Word: Metastatic Breast Cancer Conference is Coming to Chicago on Oct. 13

Many of you know that I volunteer with the Metastatic Breast Cancer Network, (MBCN),  an all-volunteer, non-profit group that serves the 150,000 U.S.  people currently living with metastatic breast cancer. In 2006, the group held its first conference at Memorial Sloan-Kettering Cancer Center. The conference was a huge success with more than 300 attendees from 19 states and Canada. Subsequent conferences have been held at  M.D. Anderson, Dana-Farber, Indiana University’s Simon Cancer Center and at Johns Hopkins.  This year’s conference will be held in Chicago on Oct. 13 at at Northwestern University’s Lurie Center. Please help us spread the news!

If you have metastatic breast cancer, I hope to see you at this event. Caretakers and friends are welcome, too.  Some scholarships are available to help defray travel and hotel costs. (Here’s the registration link.) Please join us! You will be glad you did.

The goal of MBCN’s annual conference is to:

  • Help to ease the isolation of living with metastatic disease
  • Expose misconceptions about the disease –misconceptions held not only by some patients, family and friends but also by some doctors …doctors who give up on metastatic patients too soon
  • Fight for drugs to extend life as we search for the cure

Along with medical presentations, attendees will hear testimonials from people living with MBC.  We will share our struggles, triumphs and coping mechanisms. A Friday night pizza party at Chicago’s famous Gino’s East is a great chance to catch up with old friends and make new ones. Before I attended the 2009 conference in Indiana, I hadn’t met any MBC patients in person. It made a tremendous difference to actually see  I was not alone.

If there is anything I can help you with, leave me a comment! Please helps us publicize this very worthy event!

—KOB

We have expert speakers from Northwestern,  University of Chicago, Rush University the National Cancer Institute and more. Agenda highlights include:

“Understanding MBC”

Virginia Kaklamani, MD  is an Associate Professor in Hematology/Oncology at Northwestern University. she completed her medical training with honors athe University of Athens and her residency in internal medicane at Newton-Wellesley Hospital in Boston. She received a Master of Science degree in clinical investigation from Northwestern in 2003 and joined the Northwestern faculty in that same year, following completion of her fellowship.Her clinical interests are breast cancer and cancer genetics.

“Emerging Research”

Steven Rosen, MD is the Genevieve Teuton Professor of Medicine and the Director of the Robert H. Lurie Comprehensive Care Ceter at Northwestern. He graduated from Northwestern Medical School in 1976 and completed his residency at Northwstern and fellowship in Medical Oncology at the National Canccer Institute. Dr. Rosen has received numerous awards and contracts and has published more than 200 scientific papers. He serves on several editorial boards and is editor of Cancer Treatment & Research. He is a member of all major national associations that focus on oncology and has held leadership positions in the Eastern Cooperative Oncology Group, the American Association of Cancer Institutes and the National Comprehensive Cancer Network.

“Research on Containing Metastatic Growth”

 Patricia Steeg, PhD received her PhD from the Univesity of Maryland in 1982 and was tenured in 1992 at the National Cancer Institute. She became chief of the Women’s Cancers Section in 1993. In 2004 she was appointed Director of the Moleccular Therapeutics Program, Center for Cancer Research at the NCI. Her research centers on identifying and containing metastatic growth.

BREAKOUT SESSIONS:

“Acupuncture and Chinese Herbology”

Virginia  Burns, LAC is a licensed acupuncturist at Northwestern University.

“Targeted Treatment for Isolated Mets”

Steven Chmura, MD is Assistant Professor of Radiation and Cellular Oncology at the University of Chicago. An expert in radiotherapy ad stereotactic radiosurgery(SRS), Dr. Chmura uses minimally invasive techniques to minimize tissue damage when diagnosing and treating cancers. He is an active researcher and principal investigator for the Radiation Trials Oncology Group. He received all of his training from medical school through internship and residency at the University of Chicago.

“Improving Daily Functioning”

Gail Gamble, MD specializes in Physical Medicine and Rehabilitation at Northwestern, where she is an Associate Professor. She graduated from the Mayo Medical School in 1979 and completed residency at the Mayo Clinic in Rochester.

“Treating Bone Metastases”

William Gradishar, MD is professor of medicine in division of hematology/oncology at Northwestern University. After recieiving his medical degree from the University of Illinois/Chicago, he completed residency at Michael Reese Hospital and Medical Center in Chicago and fellowship at the University of Chicago. Dr. Gradishar is hte Director of the Maggie Daley Center for Women’s Cancer Care at Northwestern Memorial Hospital. He has published extensively in the area of breast cancer therapy, with a focus on endocrine therapy, chemotherapy and novel targeted therapies. He is active in ASCO leadership, the Breast Cancer Treatment Guidline committee of the National Comprehensive Cancer Network and serves as a consultant to the Oncolgoy Drug Advisory Committee of the FDA.

“Living with MBC”  (Panel 1 for Those Under 40; Panel 2 for Those 40 and Older)

Roz Kleban is the administrator supervisor for psychosocial programs at the Evelyn H. Lauder Breast Center at Memorial Sloan Kettering Cancer Center where she oversees all social-work activities. With almost 25 years of experience working with oncology patients and their families, she leads weekly support groups for women dealing with early- as well as advanced-stage breast cancer and is a member of the professional advisory board of breastcancer.org.

“Brain Metastasis”

Lorenzo Munoz, MD is a neurosurgeon at Rush University Medical Center. He received his medical degree from the Ponce School of Medicine in Puerto Rico and completed internship and residency at University of Illinois. Dr. Munoz also completed fellowships in neurosurgical critcal care and pediatric neurosurgery.

“Triple Negative MBC”

Funmi Olopade, MD  is a Professor of Medicine and Human Genetics and Director of the Cancer Risk Clinic at the University of Chicago. She graduated from medical school at the University of Ibadan, Nigeria and completed internship and residency at Cook County Hospital and fellowship at the University of Chicago. Her current research interests include identifying the source of ER-negative breast cancer–an aggressive form of the disease, which is resistant to hormone therapy. Dr. Olopade has a special interest in women of African descent, who are at higher risk for the more aggressive breast cancer and more likely to be diagnosed at a younger age. She aims to develop new biomarkers and improve screening standards and early detection for moderate- and high-risk populations.

“Treating Pain and Neuropathy”Judy Paice, PhD, RN is Director of the Cancer Pain Program at Northwestern University and a Research Professor in the Hematology/Oncology Division. She received her RN from Rush Medical College in 1982 and her PhD from Unicversity of Illinois in 1992. Her interest are Pain Management, Palliative Care and Hospice.

“Hormone Positive MBC”

Dr. Ruta Rao is an Assistant Professor at Rush University Medical Center, where she completed her fellowship training. Prior to that, she attended University of Wisconsin Medical School and completed internship at University of Southern California and residency at University of Illinois.

“Role of the Caregiver”

 Sara K. Rosenbloom, PhD  earned her PhD from Northwestern in 2002.

 

When
Saturday October 13, 2012 from 8:00 AM to 5:30 PM EDT
Where
Robert H. Lurie Medical Research Center
303 E. Superior Street
Chicago, IL 60611
Contact
Metastatic Breast Cancer Network
888-500-0370 (voice mail)
mbcn@mbcn.org
“I have been to so many conferences where the focus was primary breast cancers and the topic of being metastatic was almost non-existent,” said an attendee at the inaugural conference in 2006.  “What about us?  What do we do?  What new therapies can we look forward to that will help keep us, that might prolong our lives for a very long time?  How do I deal with this?  If we don’t get the attention that is deserved, how can we expect non- metastatic women and men to not fear us? Thank you for doing this.”
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Hopelessly Addicted to Peppy & Upbeat Breast Cancer Articles

As I left my dermatoligist’s office this past October, I grabbed a magazine to read on the train. Unfortunately for me, the magazine was Health Monitor, a free publication distributed in waiting rooms.

There was a special Breast Cancer Awareness month profile of Olivia Newton-John.

I have read issues of “Highlights for Children” that were more informative.

Nothing against Olivia Newton-John–it’s just that the writer provided no context for her remarks–as if Newton-John’s experience could somehow be broadly applied to everyone’s.

Here is my email to the Health Monitor editor:

As one of 155,000 U.S. women living with metastatic (aka Stage IV) breast cancer, I would like to share a little secret with you:

We do not need another puff piece on women celebrities who have “survived” early stage cancer and are now prattling on about positive attitudes and natural healing while shamelessly plugging their own business ventures and entertainment projects.

A far more compelling angle for Health Monitor’s Oct./Nov. cover story would have been: “Olivia Newton-John: Hopelessly Devoted to Plastic Surgery.”

But I digress.

Bonnie Siegler’s article touts the benefits of early detection. There is absolutely no mention of inflammatory breast cancer which doesn’t present with a lump. Some women, IBC and non-IBC alike, may have breast thickness and some may have no outward symptoms at all.

Newton-John told Siegler: “If I had not found my lump by my own hands, it would have been sizably larger and it might have metastasized by the time it was discovered.”

I am 44 and I presented with mets, as six to 10 percent of U.S. women do. I resent Newton-John’s implication that somehow I did something wrong because I didn’t find my own cancer. But far, far more offensive to me is Newton-John’s sunny optimism: “I believe your outlook–the way you–think–affects your health and future. It affects your survival.”

I am a woman with an incurable disease. I am not the Little Engine That Could. A positive attitude will not unsnarl my defective DNA.

“It is difficult enough to be injured or gravely ill. To add to this the burden of guilt over a supposed failure to have the right attitude toward one’s illness is unconscionable. Linking health to personal virtue and vice not only is bad science, it’s bad medicine.”

–Richard P. Sloan, professor of behavioral medicine at Columbia University Medical Center, and author of “Blind Faith

Early stage breast cancer does not kill women. Metastatic breast cancer does.

Siegler seems to perpetrate the early stage “Treat it & Beat it” breast cancer myth. Although follow-up care is mentioned, one key word, “recurrence,” is nowhere to be found.

In October, the Breast Cancer Awareness spotlight is almost exclusively on women who “beat” cancer–not the “metser” who is losing her hair for the third time, or the one struggling with chronic constipation or the one who knows she won’t see her daughter graduate from grade school.

The next time you write about breast cancer, I hope you will go far beyond a superficial profile of a celebrity with early stage breast cancer who advocates some vaguely defined “holistic” approach. There are many excellent metastatic breast cancer resources–the Metastatic Breast Cancer Network (www.mbcnetwork.org) would be happy to provide input.

Here is what I wish Siegler and Health Monitor readers knew about metastatic breast cancer and breast cancer in general:

>Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver and lungs.
>Treatment is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)
>About 6% to 10% of women are Stage IV from their initial diagnosis.
>Early detection is not a cure. Metastatic breast cancer can occur ANY time after a woman’s original diagnosis, EVEN if she was initially Stage I, II or III.
>Only women with Stage 0 (DCIS) (noninvasive breast cancer) aren’t considered to be at risk for metastatic breast cancer.
>Between 20% to 30% of women initially diagnosed with regional stage disease WILL develop metastatic breast cancer.
>Young women DO get metastatic breast cancer.
> There are many different kinds of metastatic breast cancer.
>Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.
>Any breast lump, thickness or skin abnormality should be checked out. With inflammatory breast cancer, there’s no lump-the breast can be red and/or itchy and the skin may have an orange-peel like appearance.
>Women shouldn’t use the recent mammogram controversy to postpone their first mammogram or delay a regularly scheduled exam, especially if they have a family history.
>Mammograms can’t detect all cancers. Trust your instinct. If something feels “off” insist on further diagnostic testing.
>Metastatic breast cancer isn’t an automatic death sentence–although most women will ultimately die of their disease, some can live long and productive lives.
>There are no hard and fast prognostic statistics for metastatic breast cancer. Every woman’s situation is unique.
>There are many excellent online metastatic breast cancer resources. Examples include www.mbcnetwork.org, www.inspire.com , www.breastcancer.org and  www.metavivor.org. (Not forgetting http://www.ihatebreastcancer.wordpress.com.!)

NOTE: To her credit, the Health Monitor’s editor did promptly respond with an invitation to write my own article. I haven’t done so, but I will follow up with her to see if the offer is still open!

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MBC Mavens Jane, Nina & Ellen

Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network  (MBCN) in 2004.

Soyer, an NYC public school teacher, mentor and guidance counselor died in 2005. Schulman, an Emmy Award-winning film editor, producer and director, died in 2008.

“Meeting Nina in 2006 changed who I was,” says Ellen Moskowitz, MBCN’s volunteer president for the past five years. “Nina would not accept being ignored by the breast cancer community and believed we need to be our own best advocate through education. People, need to know we are here—155,000 of us living with metastatic breast cancer in the U.S.– the entire breast cancer community needs to embrace all of us with breast cancer, not just those who may think they are cured.”

Moskowitz says joining MBCN and working with Nina gave her a purpose. “I developed pride in being able to reach out to so many,” she recalls.   “I  experienced a very satisfying feeling of empowerment.”

According to Moskowitz, Schulman “would rant when other breast cancer organizations would once yearly light a candle for all who died that year and then go on with business as usual–business that excluded doing anything to meet the unique needs of our population.”

Schulman wanted people to  know that although many are still dying too soon, “many people with MBC are living longer and stronger,” says Moskowitz.  ” We should not be [dismissed] with the thinking that ‘they will die anyway.’  Nina was determined that our programs, our brochures, our website all represent hope. She would not allow any aspect of death. She didn’t want candles lit or moments of silence in remembrance…She wanted everyone to focus on keeping us alive!”

Prior to 2004, there were no very few metastatic support groups. “There was no mention of MBC during pink ribbon month, no talks on mestatatic disease at any cancer conferences, no nothing!”  Moskowitz says. ” We were completely and totally hidden away and frequently made to feel we just didn’t fight hard enough.”

(Update: After the original post  Marie Carmel reminded us the IV League in Austin, TX was founded in 2002. Find them on Facebook, too.  For more support groups, including a list of regional groups, see http://mbcnetwork.org/support-resources/category/support/)

Marie Carmel Our Stage IV group was founded in 2002. Yes, we were hidden and we had to fight for our survival, both as cancer patients and as a support group. … but we did exist.

43 minutes ago · 

 

After more than five years of volunteering with MBCN, Moskowitz recently stepped down as president. “We started with 30 members and now have close to 2,000 members across the country and scattered members across various oceans!” she says. “Our new president is Michele Przypyszny and I know she will work hard to grow our mission and connect with you.”

Moskowitz is proud of the projects she completed with the help of other MBCN volunteers. She teamed with volunteer Suzanne Hebert to plan, organize and edit the pamphlets in the MBC kit. She credits volunteers Shirley Mertz and Susan Davis with leading MBCN’s successful drive to have both the House and Senate declare Oct. 13 National Metastatic Breast Cancer Awareness Day.

“All of us made that happen,” says Moskowitz.  “The previous the years of members reaching out to their mayors and governors to proclaim the day set the stage for the House and Senate to do their part.”

Moskowitz is also enthusiastic about the recently launched MBCN website. Volunteer Ginny Knackmuhs led this effort which represented more than a year of planning and ongoing work.

What’s on Your To Do List?

At   www.mbcnetwork.org you can:

>Order a metastatic kit (brochures).

>Request a t-shirt to wear when you do cancer walks.

>Watch the videos from our conferences.

>Take a look at metastatic events–maybe there is something in your area.

>Read inspirational stories.

>Share your inspirational story.

>Check the latest MBC news.

>Contact your local newspaper and request they do an informational piece on MBC.

>Encourage your cancer center to start a metastatic support group.

>Become a member of MBCN and let Michele know if you have a particular skill or interest to volunteer.

The last word

“We need to keep this awareness growing,” Moskowitz says. “We need to speak up and not allow MBC to be put on the back burner. We need to ensure that National Breast Cancer Coalition (NBCC) includes research to STOP metastatic spread—and not just to prevent metastatic spread. So much has changed for us since I was diagnosed.  I am so proud to have been a contributing factor to this change. We are bonded and our voice is louder than ever–we are actually being heard!”

Keep in touch

Membership in MBCN is free. Signing up at  www.mbcnetwork.org ensures you’ll be on the mailing list. Look for more details  on the next National Conference soon.  For more details send an email to  mbcn@mbcnetwork.org.

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