Tag Archives: MBCN

Some Metastatic Cancers Are More Curable Than Others

MBCN's tshirt slogan

MBCN’s tshirt slogan

Last week’s Keller/Adams social media controversy inspired countless blog posts, print articles and editorials. Like remoras to a shark, everyone hustled to attach themselves to this issue.

There were almost too many angles–the alleged issue of quoting from private correspondence, the potential ethical issue of Bill Keller apparently taking up cudgels on his wife’s behalf, the so-called “funeral-selfies”  social media debate, the gross misrepresentation of Lisa Bonchek Adams’ current health and metastatic breast cancer in general, the lack of any observations on the apparent lack of diversity in patient advocate social media despite the terrible racial disparities in metastatic breast cancer in the United States and on and on.

One of my first priorities was  working with MBCN’s Ginny Knackmuhs to address Bill Keller’s wrongheaded comparison of Adam’s cancer treatment vs. that of Keller’s 79-year-old father-in-law. Keller paints his father-in-law’s death using delicate pastels:  The elderly man was unplugged from everything except pain killers and “allowed to slip peacefully from life… a humane and honorable alternative to the frantic medical trench warfare that makes an expensive misery of death.”

Adams, by contrast, is sketched with the blackest of charcoals:  “She is all about heroic measures. She is constantly engaged in battlefield strategy with her medical team. There is always the prospect of another research trial to excite her hopes. She responds defiantly to any suggestion that the end is approaching.”

But that’s just not true! Adams was diagnosed about a year ago with metastatic disease. Her care isn’t extraordinary or “premium” as Keller wrote.  In 2011, Dr. Gabriel N. Hortobagyi, director of the breast cancer research program at M. D. Anderson Cancer Center in Houston, told the New York Times the average patient may receive eight or 10 different treatment regimens in sequence. (RONI CARYN RABIN did a wonderful job; if you want to learn more about MBC, please read her 2011  “A Pink-Ribbon Race Year Long.” If only the Kellers had “perused” it…)

Adams’ pharmaceutical quiver isn’t empty–that wasn’t why she enrolled in a clinical trial. Many  people with metastatic breast cancer take the same pain relief steps Adams did (radiation).  This is hardly a “heroic measure” as Keller characterizes it.  Most people with metastatic breast cancer do have a close working relationship with their oncologists. Keller is probably used to hearing stories of people with early stage cancer who have a finite chemo regimen and then return to their pre-cancer lives.

With metastatic breast cancer, one never “finishes” treatment.  You are always on something–if possible, patients start with the least toxic option first. It’s not always crystal clear which drug a patient should use (or in what sequence). It depends on the subtype of the breast cancer, prior treatment, and many other factors, including patient preference. Bill Keller calls this a “battlefield strategy.” In my world it’s called “a doctor’s appointment.”

It is dangerous to make generalizations in the world of metastatic breast cancer. I have been living with MBC for four years and I haven’t had chemo yet. I am fortunate my low-volume of bone mets hasn’t done much–I have friends who have been on chemo for four years and even longer. Even oncologists–never mind mere journalists–find it difficult to offer people with MBC a prognosis. I think it’s pretty safe to say, however, that someone who is still writing and tweeting with Adams’ trademark verve and frequency won’t soon be shuffling off this mortal coil. From her vigorous and trenchant output, it’s very clear Adams understands and accepts that in all likelihood she won’t be cured.

peace_love_cure_testicular_cancer_postcards

Metastatic breast cancer unfortunately is not among the metastatic diseases that can be cured–like testicular cancer.  Lance Armstrong had mets:   his testicular cancer spread to his brain, lungs and abdomen. He had his last chemo 17 years ago and, in all likelihood is cured. Someone with metastatic breast cancer would be THRILLED to have lived 17 years with metastatic disease–of course, on the downside, they would almost certainly have been on chemo for most of those 17 years

Testicular cancer treatment has been heralded as  a triumph of modern medicine, with sustained response to treatment in more than 90% of cases, regardless of stage. In 2011 overall cure rates of more than 95% were reported, and 80% for metastatic disease—the best response by any solid tumor, with improved survival being attributed primarily to effective chemotherapy (cisplatin).

Unfortunately, that is not our story in metastatic breast cancer. Not today, anyhow.

People just do not understand this–including other patients with metastatic cancer. Consider Bill Saporito’s well-meaning but ultimately off-base online post for TIME.  The journalist, previously described as “a  five-year esophageal cancer survivor in 2008,” rallies to Adams’ defense with this paragraph:

Having once experienced stage IV cancer, I understand Adams’ desire to fight it with every drug that Memorial can throw at her. If they had told me to drink mercury I would have asked for a double—and keep in mind that in many drug trials that is essentially what’s going on: You get dosed with poison while the clinicians try to guess whether the poison will kill you or the cancer first. But patients are fully informed…

That first sentence really jumped off the screen. “Having once experienced stage IV cancer…” Once? Had? 

We wish that was the case with metastatic breast cancer but with our Stage IV there is no past tense. You have it and you live with it. Hopefully a patient will have some periods of stability or maybe even  no evidence of disease (NED) for awhile, but you never, ever can say “I had metastatic breast cancer.”

I wish Bill Saporito nothing but the best of health. But his metastatic cancer was a sprint. Mine is  a marathon.
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REGISTER NOW FOR MBCN’s CONFERENCE

Register NOW for the Metastatic Breast Cancer Conference

Hopefully you’ve registered already for the conference! There’s still time to sign up but we are really coming down to the wire for scholarship applications and our hotel block. SIGN UP TODAY!!!

We are working very hard to bring you an excellent conference! So much to do, so little time! But it will totally be worth it to see all of you. Join us!

The Metastatic Breast Cancer Network’s (MBCN’s)

2013 Annual Conference In Conjunction with MD Anderson

WHO: People living with metastatic breast cancer and their spouses, partners, friends and caregivers.

WHEN: September 20-22, 2013.

WHERE: Houston Marriott @ Texas Medical Center.

MORE INFORMATION: www.MBCN.org.

Additional Useful Links:
The agenda is here: http://mbcn.org/special-events/category/agenda-2013

You can register here

Apply for a scholarship here (MUST complete registration first.)*

Register for a room here*

*We are practically at the deadline!!! Apply NOW!!

 

Scenes from our 2012 Conference

Scenes from our 2012 Conference

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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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Our Feel-Good War on Breast Cancer: Who Will Listen?

Patrick Hamilton/Newspix/Getty Images; Matt Born/The Star-News, via Associated Press; Gabrielle Plucknette/The New York Times; Sharpie, via Associated Press; U.S. Postal Service, via Associated Press.

Peggy Orenstein’s NYT Magazine article,  “Our Feel-Good War on Breast Cancer,”  is generating a lot of commentary on Twitter and various message boards.I summarized the article and offered some commentary on the MBCN blog. But I still have a few more things to say.

As Orenstein’s article demonstrates, breast cancer is complex disease. Here are some quick thoughts about breast cancer and screening:

I’m grateful the New York Times provided Orenstein with a platform to tell her story. The article’s run length is both intimidating (about 6,500 words) and frankly amazing (with today’s anemic ad revenues most journalists are routinely expected to perform the print equivalent of inscribing The Lord’s Prayer on a grain of rice).

It bothers me, however, that many of the messages in Orenstein’s aren’t new. They have  just never attained the same level of discussion. Consider Musa Mayer’s 2011 NBCC presentation “Theories of Metastasis“:

Mayer wondered why very few advocates focus on MBC. She offered the following theories:

  • Avoidance: Vast majority of advocates are primary breast cancer survivors at risk of recurrence: “We are what the pink crowd wants to forget because we are the painful reminders of what can happen.”
  • Expertise required: Lack of knowledge about complex MBC treatments and the different issues that women with MBC face
  • Lack of data: Incidence and prevalence of MBC unknown, so basic tools for advocacy are missing
  • Screening and early detection still a primary focus
  • Naïvete and fatalism both play a role
Musa's Mayers "Theories on Metastasis: Innovative Thinking, An Advocacy Perspective" can be downloaded at http://advancedbc.org/file/Mayer_NBCC_2011_0.pdf

Musa’s Mayers “Theories on Metastasis: Innovative
Thinking, An Advocacy Perspective” can be downloaded at http://advancedbc.org/file/Mayer_NBCC_2011_0.pdf

Dr. Gilbert Welch’s 2012 NTY Op-Ed piece, “Cancer Survivor or Victim of Over Diagnosis”  also covers much of the same ground as Orenstein’s 2013 article, and, indeed, Welch is prominently featured in Orenstein’s article.

Welch’s article ran on November 21, 2012. Did you read it? Did you share it on Facebook and Twitter? I know I didn’t. Yet when Orenstein reiterates many of Welch’s points lo these five months later, suddenly this same information is more compelling.

One of Orenstein’s central tenets is that early detection is not a breast cancer cure. That’s been said before here, here and here and I’m sure countless other places. In my own writing, I have frequently cited The National Breast Cancer Coalition’s 31 Myth and Truths.  Here is an excerpt from NBCC’s Myth #2:

…evidence shows that in the United States, it has been estimated that a woman’s cumulative risk for a false-positive result after ten mammograms is almost 50 percent; the risk of undergoing an unnecessary biopsy is almost 20 percent. In addition, women who are screened with mammography often have more aggressive and unneeded treatments. It is estimated that mammography screening has increased the number of mastectomies by 20 percent and the number of mastectomies and lumpectomies combined by 30 percent.

Women are regularly told 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. Since evidence does not currently significantly support, nor disprove the effectiveness of this test, receiving a screening mammogram should be a personal choice, not a medical mandate.

It’s also instructive to note what this 2009  NYT Op-Ed piece said:

Screening turns up lots of tiny abnormalities that are either not cancer or are slow-growing cancers that would never progress to the point of killing a woman and might not even become known to her…The scientific argument is that it is not worth taking such risks for the large number of women whose cancers grow too slowly to kill them. But it is difficult, in practice, to apply that kind of scientific analysis to the immediate questions confronting a woman and her doctor when a mammogram turns up an abnormality. The only real solution will come when researchers find a way to distinguish the dangerous, aggressive tumors that need to be excised from the more languorous ones that do not.

If you’ve read Orenstein’s current article, that last part will certainly sound familiar.

Orenstein’s 2013 article reminds us  that metastatic breast cancer research receives scant funding, noting that “only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis.”

That point previously was made in Roni Caryn Rabin’s 2011 NYT story: “A Pink Ribbon Race Years Long”:

Since it is metastasis that ultimately kills, some advocates want more resources devoted to its study and treatment. Even though many cancer drugs are initially tested on patients with advanced disease, Danny Welch, an expert on metastasis, says only a few hundred scientists in the world are trying to understand the process. “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget,” said Dr. Welch…

And Mayer, in her 2011 presentation says the same thing. She offers a pie chart from Science Daily, as well as this pull quote:

“Although there is considerable variation, the median spent on metastasis research is around 5% of total cancer research funding. Is this sufficient?” Jonathan Sleeman, Patricia S. Steeg, “Cancer metastasis as a therapeutic target,” European Journal of Cancer 46 ( 2010) 1177–1180 (free full text).

To paraphrase Yogi Berra, it’s deja vu all over again, isn’t it? Well, perhaps if we say it  loud enough and long enough people will start listening.

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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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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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