Join MBCN in Taking Part in ITSABOUTTIMEMBC

September 28, 2016

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Metastatic breast cancer – cancer that travels from the breast and spreads to other parts of the body – is treatable, but not curable. Though exact statistics are unknown, an estimated 155,000 people are living with the disease in the United States.

Those with metastatic breast cancer face challenges different from those with early stage because metastatic breast cancer patients are always in treatment. They experience ongoing anxiety and fear knowing they will die one day from the disease.

 

For metastatic breast cancer patients it’s about time. Time to spend with their families, time to cross something off their bucket list, time to simply drive the carpool or cook a meal.

It’s also about time we increased awareness of the disease, time we developed more treatments to help metastatic patients live longer, time there was more recognition and support of those managing this disease.

As we approach Breast Cancer Awareness month,the Metastatic Breast Cancer Network (MBCN) is proud to be taking part in the It’s About Time campaign to raise awareness of metastatic breast cancer. What does time mean to you and your family? What would you do with more time? We invite you to visit the campaign website at www.itsabouttimeMBC.com and share your stories – or spread the word on social media using the hashtag #itsabouttimeMBC.

More than 30 organizations and 100 bloggers will be sharing their stories. Please join us! You can share your story AND take part in a special Facebook event on Oct. 13; National Metastatic Breast Cancer Awareness Day. Beginning at 8:13 a.m. Central time, and continuing at 13 minutes past the hour, for 13 hours, It’s About Time will be hosting a conversation at https://www.facebook.com/ItsAboutTimeMBC/. Every hour matters, we hope you will join us.

Blogger and MBCN board member Katherine O’Brien has shared her story here


Ginny Knackmuhs: An Uncompromising Advocate

August 16, 2016

It it is never easy to share the news of another life lost to metastatic breast cancer. But it is particularly hard to let you know that our dear friend and MBCN board member Ginny Knackmuhs has died. Our sincere condolences to Ginny’s family, friends and fellow advocates.

Ginny’s accomplishments on behalf of MBCN and her fellow patients are far-ranging and enduring. She was the anchor of our website–a trusted resource for people around the world. Ginny was MBCN’s treasurer and webmaster but her reach far exceeded those official duties.

Ginny’s husband, Gary, used to refer to  us  as “your people.” If someone from MBCN or another advocacy group called the Knackmuhs’ home and he answered he would hand the phone to Ginny and say, “It’s your people.” He said all of these groups collectively reminded him of “The Five Families” as depicted in “The Godfather.” Although this wasn’t an entirely accurate assessment, in some ways Ginny was our Tom Hagen, the capo who got things done. She was a great natural leader and a woman of decisive action.

As Texans say, some people are all hat and no cattle. Not Ginny– because her treatment center didn’t have an in-person support group, Ginny helped establish one. When a national breast cancer organization overlooked people living with Stage IV breast cancer, Ginny presented the facts and asked them to re-evaluate their stance. (They did.) When the Metastatic Breast Cancer Alliance was coming together, Ginny was front and center and helped jump-start its creation.

A few years ago, an academic cancer center asked us to co-host a webinar on key issues in metastatic breast cancer. The proposed webinar was to take place in November–both Ginny and I felt that attendance would suffer because in the wake of Breast Cancer Awareness month, many people want to take a break from cancer talk. We asked our contact at the cancer center to shift the event to September or October but she said  their schedule was inflexible. Ginny was not to be denied. She politely–but firmly–said we could do it in October. And we did! I would have caved  and resigned myself to the November slot, but Ginny was made of stronger stuff.

“Ginny was the heart and soul of MBCN’s online presence,” says Shirley Mertz, MBCN’s President.  “Many visitors to MBCN.org  have expressed their gratitude to find patient-centric information.” “This is the most informative site I have been to yet,” wrote Jean M.  “Thank you for giving me a place to go, a place to get information that pertains to me.  I was moved by the many testimonials/videos.  So positive.  I found the technical section on drugs and treatments very informative – thank you for that. Also found it easy to navigate your site. It’s a great website and lots of resources, which I will be using.”

Doctors also commented on the wealth of information on the website, according to Shirley.  “This is all to Ginny’s credit,” says Shirley.  Ginny worked extremely hard on MBCN’s redesigned website which will debut shortly. It is a wonderful legacy.

ScanTreatRepeatGkMBCN has popularized the phrase “Scan, Treat, Repeat: Stage IV Needs More.” Ginny and I were talking about a motto that could be used to along with MBCN’s new logo and that is what we came up with. Ginny created the first iteration–complete with the now familiar circle and three arrows. I have seen doctors use the Scan Treat Repeat logo in their metastatic breast cancer presentations and patients quickly embraced it, too. Anyone would be proud to contribute a phrase to general usage, but Ginny has the distinction of contributing  the saying as well as boosting people’s understanding of the disease. MBC advocates often talk about “changing the breast cancer conversation.” Ginny has well and truly has done that.

Board member Deb Tincher and Conference Chair recalls, “If you attended an MBCN conference in recent years, you probably knew Ginny. As treasurer, she sent out scholarship reimbursement checks. It was an arduous and time-consuming task that required collecting surveys, expense forms and receipts from the attendees. Ginny knew many attendees are on tight budgets–she cut the reimbursement checks as quickly as possible. She was always thinking of others.”

Ginny, by her own example, pushed many of us to expect more and to do more. A couple of years ago, there was a special event in Time Square to call attention to October 13th, National Metastatic Breast Cancer Awareness Day. Ginny and I joined some other Stage IV patients and advocates on GMA’s outdoor plaza. (Ginny, true to her 1960s roots, took the precaution of taking only her ID and a small amount of cash with her. “In case we get arrested,” she explained as we walked over from our nearby hotel.)

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Ginny with SHARE’s Christine Benjamin and me on Time Square

I thought that if we were lucky, we might get our signs on television. Ginny actually got the weather person to acknowledge the MBC delegation as well as the Awareness Day designation on national television. “Next year I want to go INSIDE the studio and be interviewed,” Ginny told me.

Ginny had lobular metastatic breast cancer (most breast cancer is ductal) and  she also had the triple negative subtype which notoriously aggressive. She did not write extensively about the specifics of her case, but MBCN would like to share some information we think she would want everyone to know.

“I was diagnosed in 1992 with early stage cancer–Stage 0 or DCIS–the earliest you can have,” Ginny wrote in this blog post. ” I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. . . I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me. Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a fail-proof screening test.”

Ginny went on to say that her breast cancer education began the day she received her Stage IV diagnosis. “I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone. The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with the cure.'”

Ginny wanted her experience to have meaning. “I never want to characterize cancer as a gift,” she wrote. “I don’t think I need to endure treatments and side effects the rest of my life just to be a better person. But I’d like to believe that I have Stage IV metastatic breast cancer for a reason: to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the ‘guilt’ myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.”

She further noted that October 13 is Metastatic Breast Cancer Awareness Day. “It’s the one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring. . .It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out…”

Amen, Ginny. We will, too. 

–Katherine O’Brien, August 2016

 


Molly’s Army

October 28, 2013
By Molly Fuglestad
I attended the MBCN’s conference last month and took to heart your message, “use your voice and story for change in metastatic cancer.” Below is my Caring Bridge blog post, in which I shared an extraordinary story of four young individuals that used their leadership skills to make a difference.  I call my supporters, “Molly’s Army.”

October 13th was National Metastatic Breast Cancer Awareness Day.  It is a day that has been organized to educate others beyond the powers of Pinktober.  Currently 155,000 people live with metastatic breast cancer.  Of that number, 40,000 die each year from the wrath of this disease; a statistic that has not changed significantly in the past twenty years.  Did you know that only 2-5% of research money is used towards funding metastatic breast cancer research, yet 95% of deaths occur among those who have advanced or metastatic disease? (www.mbcn.org

The facts are startling, but I want to share a story that is equally as startling; one that will warm your heart and make you a believer of the new generation set to take over our world. 

Allow me tphoto (15)o introduce you to four children, Parker and Reese Fetherston and Sophie and Ethan Tubbin.   These children are examples of how every parent hopes their child will turn out:  kind, caring, athletic, generous, and leaders.  They approached me a couple months ago, wanting to have a fundraiser for breast cancer.  Excitedly they described the carnival, food, and silent auction that would be in store for the entire neighborhood.  I thought to myself, “Wow, that is quite an undertaking,” but quickly found a date for this event to occur.  Unbeknownst to me, it happened to be Metastatic Breast Cancer AwarenessDay. 

It was a picture-perfect day.  The kind you imagine in your wildest dreams:  sun, a slight breeze, and temperatures in the 60’s.  The Fetherston and Tubbin’s back yards conveniently butt up to each other and were decorated with balloons, posters that read:  “Molly’s Army:  we got your back,” a table of silent auction items, seating areas for adults and children and numerous carnival activities for the kids. 

DSC_0017Tickets cost 25 cents and each activity required one to two tickets.  Make-n-take frame decorating, basketball toss, cookie decorating, ball toss, bean bag toss, trampoline jumping were just some of the games.  Dinner, home-grown vegetables, and pink candles could additionally be purchased.  My kids and niece were thrilled with their bags of prizes won from various carnival activities.  

To look around and see over sixty neighborhood friends coming together for one cause was overwhelming, but to think two elementary and two middle school kids organized this evcarnival crowdent with significant thought and attention to detail is to be commended.  The four worked together tediously creating and re-creating list after list of elements to make this neighborhood event a success.  I could not be more proud of four children than I am now.  Let’s not forget about the examples of generosity that have been led and reinforced by their parents, Greg and Heather and Matt and Maria for supporting their children’s ideas and then assisting them into reality. My Army is an example of four children that are going to make things happen in their life and others.  They exemplified leadership at its finest by helping to support a common cause with creativity and remarkable dedication. 

carnival silent auctionI am delighted to write that their event raised over $400 thanks to some extraordinary children and a neighborhood of support.  The Metastatic Breast Cancer Network will be receiving this money.  This organization provides education for metastatic breast cancer to patients and loved ones and advocates for improved outcomes in the clinical setting.  I can’t think of a more deserving organization that is focused on finding treatments to extend lives until a cure is found.

It takes leaders and voices to be heard for change to occur.  March forward, Army, with your influence and loud voice.  Left, left, left right left….    

Thanks, MBCN for educating me so I could educate others with my voice and actions.


Our Feel-Good War on Breast Cancer: MBCN Responds

April 27, 2013

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

By Katherine O’Brien, MBCN Secretary

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:

According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

There’s also the intertwined issue of funding research for the prevention of metastatic breast cancer vs. treatments that will extend the lives of those currently living with the disease:

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

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

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

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

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

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

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

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

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

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

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

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

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

Source: email correspondence with Musa Mayer

 


Meet Shirley Mertz, MBCN’s New President

January 15, 2013

By Katherine O’Brien

Shirley at the 34th Annual San Antonio Breast Cancer Symposium

At a 2009 breast cancer seminar, I met two Chicago-area MBCN volunteers: Joani Gudeman and Shirley Mertz. I had never met another person with metastatic breast cancer. Joani and Shirley made me feel less alone. Their activism inspired me.

The meeting was held in a hotel ballroom on a Sunday morning. There were several hundred people in attendance and most were casually dressed. Shirley, however, was  professionally attired in a perfectly tailored suit. Who would get dressed up on the weekend? Certainly not me. But there was Shirley, dressed for success. Although she was not part of the medical panel fielding questions, Shirley was summoned to the stage to read a proclamation about October 13,  National Metastatic Breast Cancer Awareness Day.

In 2008, Shirley and her fellow volunteer, the late Susan Davis,  launched MBCN’s drive to formally establish October 13 as National Metastatic Breast Cancer Awareness Day. In October 2009, they succeeded: The Senate and House each unanimously passed a resolution to support that designation.

I remember watching Shirley striding purposefully to the stage. She absolutely belonged up there–she commanded attention and respect. Almost a year later, I met Shirley again in Indianapolis at MBCN’s  2010 Annual Conference on Metastatic Breast Cancer. Again, I was struck by Shirley’s leadership–she moderated several sessions. As I got to know her a little bit better, I saw flashes of Shirley’s humor–and that made me like her even more. She’s serious in her advocacy efforts, but she enjoys a good joke and will often tell one on herself.

In 2011 and 2012 as I did more volunteer work with MBCN, I learned that Shirley, a former high school principal from northwest suburban Chicago, also earned a law degree. I don’t think Shirley divulged this information–she did share, however, that she is a proud graduate of the National Breast Cancer Coalition’s (NBCC) Project Lead, a science training program for activists. Shirley became a consumer reviewer for the DOD Breast Cancer Research Program and advocate for national health care reform. In 2008, she personally asked Senator Evan Bayh to sponsor a Senate Resolution for MBC Awareness Day and then co-chaired the team that traveled to Washington to lobby for Congressional passage. In 2011, she was honored as a Champions of Change in breast cancer at the White House.

Shirley Mertz with the University of Chicago’s Olufunmilayo Olopade, MD

Shirley was diagnosed with metastatic breast cancer in 2003, twelve years after being treated for DCIS. Like me, she wanted to meet other people dealing with a diagnosis of metastatic breast cancer. She was appalled to learn how few resources existed and determined to make a difference. “My passion is being a voice for metastatic breast cancer patients,” Shirley told me. “I have not hesitated to share my experiences with this disease because I want to motivate others to speak up. Joining together with a focused message, metastatic breast cancer patients can improve outcomes in the clinic.”

Shirley’s own story illustrates some key messages for people with metastatic breast cancer. “Allow yourself time to cry, then put on steel armor and learn to take charge of your care,” Shirley told a University of Chicago interviewer. ” You must be your own advocate.”

After her recurrence, Shirley’s former oncologist based her treatment on the biological characteristics of the 2003 tumor. But it was clear the treatment was failing. Shirley lobbied for a new biopsy–and ultimately got one, after pursuing a second opinion. The biopsy revealed the pathology of Shirley’s cancer had changed–it wasn’t the same subtype as her original diagnosis.   “A great oncologist will never be offended if you ask for a second opinion,” she says. By sharing her story, Shirley has helped untold people.

Earlier this year, MBCN named Shirley as its president. In addition to targeting underserved areas of the US, she’s committed to raising the group’s profile with metastatic researchers. “If scientists could meet us and personally hear our needs, that would be a powerful message,” she says. “With the board’s help and enthusiasm, we will take our commitment to patients to another level.”

You go, Shirley!

Katherine O’Brien is MBCN’s Secretary and Public Relations Chair


Breathe in that sweet, cool November air!

November 14, 2012

I live in New Jersey and I’ve been feeling a bit weary but triumphant this November, having survived a triple threat: Hurricane Sandy which knocked out power to my town for a week, a November 7 Nor’easter which dropped three inches of snow on us and… Pinktober.

We all survived another onslaught of Pinktober and I’m happy to say that more and more of you participated in raising your metastatic voice above the cheerleading din of the ‘happiest cancer on earth’ to set the record straight and make some inroads into the misinformation that reigns.

MBCA Day October 13 2012 at the MBCN conference in Chicago

On October 13 I was at the MBCN conference (which was fabulous) and I was interviewed for some articles and media stories later in the month.

But, when I think of spreading awareness of mbc, my thoughts keep returning to a simple encounter I had with a woman with early stage cancer who was on a panel with me, Breast Cancer Perspectives, held at our local YMCA. The program was poorly attended because of the weather and lack of publicity, but it was a meaningful experience for all who attended and people lingered afterwards. My fellow presenter came up to me and said, “I never thought about breast cancer from your point of view and, as I was speaking after hearing your story, I thought for the first time that what I was saying might be painful or hard for you to have to hear all the time.”  One encounter, one person whose perspective was changed.

Did anyone have a similar experience? Or maybe you wrote a letter, told your story, donated money, attended a program or conference or posted a comment online.

I’d love to hear about it.  In the Comments Section below, please let me know by completing this statement: Here’s what I did for Metastatic Breast Cancer Awareness this year:  ________________

I will be creating a page on our website for 2012 MBCAwareness activities to show that one person can make a difference.

Here’s a start to the page: a  very brief sampling of interviews, articles and letters to the editor, proclaiming the complete picture of breast cancer, including those of us living on the darker side of pink. Please feel free to send me any additional links.

Articles:

 

Carol and her husband at the Greater Nashville Komen Walk, raising awareness of mbc

Letters to the Editor:

Metastatic Breast Cancer Knows No Month – 11/1/12 The Tennessean

Fight Metastatic Breast Cancer with Education – 10/29/12 The News Herald Northern Ohio

For some every month is breast cancer awareness month 10/4/2012 Examiner.com

Blogs:

During Breast Cancer Awareness Month, We Must Not Only Celebrate Success, but Reflect on Our Limitations As Well  -American Cancer Society Dr. Len’s Blog

Where is our Metastatic Breast Cancer Celebrity Spokesperson? –  ihatebreastcancer blog

Send me the links I’ve missed by commenting below!

THANK YOU!

Ginny Knackmuhs
MBCN Board

The newest Facebook BC Awareness game

October 1, 2012

by Holly Raby, guest blogger

Spoiler alert- I’m going to reveal one of the latest Facebook games going around!

In past years, women have been asked to update their Facebook status with their bra color, the location of their purse, and other odd statuses in the name of Breast Cancer Awareness.  One of this year’s versions is to post a heart as your status.

This is supposed to promote Breast Cancer awareness.  Can anyone tell me how, since one of the rules of the game is “if anyone asks you why you have a heart as your status, don’t tell them”?  What’s the point?  How does that spread awareness?  And besides, isn’t everyone already aware of Breast Cancer?

How about something more useful?  If you want to do something meaningful for October, do something that will actually help yourself or someone else.  Don’t settle for posting a heart and buying a pink water bottle. Start a conversation.  Take a stand.

  1. If you’re 40 or older and haven’t had a mammogram in the past 12 months, schedule one.
  2. If you’re told “it’s probably just a cyst”, or “probably just an area of dense tissue”, or “you’re too young” (breast cancer can hit at any age- even teens) demand an ultrasound or mammogram to confirm.
  3. Make a donation to Metavivor (www.metavivor.org) – a volunteer organization that provides grant money to researchers looking into cures for Metastatic Breast Cancer.
  4. Make a donation to Metastatic Breast Cancer Network (www.mbcn.org).  MBCN’s mission is awareness of mbc, education for patients and advocacy for treatments to extend our lives.
  5. If you’re in the Twin Cities, shop at Hope Chest For Breast Cancer (http://hopechest.us/) – proceeds provide emergency financial support to women with Breast Cancer to help them cover their rent, utilities, and transportation costs so they can get to doctor appointments, and don’t have to make the decision of whether this month’s paycheck goes to chemo or their landlord.  (And Hope Chest has super cute stuff!)
  6. Before throwing random pink items in your shopping cart, find out how much, and to where, that company is donating.  If the company doesn’t or can’t tell you, reconsider the purchase.
  7. Join Army of Women (www.armyofwomen.org) , and help researchers find the cause of Breast Cancer.  They need women of all ages, with or without any prior history of breast cancer.
  8. Post some of the following facts, instead of a heart, as your FaceBook status:
    1. 280,000 women and 2,000 men will be diagnosed with Breast Cancer this year in the US.
    2. According to American Cancer Society, 39,520 women and 450 men died of breast cancer in 2011.
    3. A lump is not the only sign/symptom of Breast Cancer.  One type, Inflammatory Breast Cancer, doesn’t present with a lump at all.
    4. Risk factors include being a woman, being overweight, not exercising, not eating healthy, smoking, getting older, and drinking alcohol.  You can control most of these.  Learn more: http://www.breastcancer.org/risk/factors/.  But doing everything right doesn’t make you immune, either.  You can’t prevent Breast Cancer, but you can reduce your risks.
    5. 1 in 8 women will be affected by Breast Cancer in her lifetime.
    6. 20-30% of women diagnosed with an early stage (stage I, II, or III) cancer will have the cancer return months, years, or decades later as stage IV (metastatic). 6-10% of women (like me) will be diagnosed with Metastatic Breast Cancer from the get-go.
    7. There is no cure for Metastatic Breast Cancer.
    8. Only 5-10% of Breast Cancer cases are due to genetic factors.
    9. Check out some of these blogs to get a glimpse into the daily life of someone with Breast Cancer:

My Big Girl Pants- http://mybiggirlpants.blogspot.com/

Planet Toddler- http://toddlerplanet.wordpress.com/ (Sadly, the author of this blog died in February 2012, but her blog leaves a legacy of her fight to the very end)

I Hate Breast Cancer- http://ihatebreastcancer.wordpress.com/

F*ck Cancer- http://fckcancer-carla.blogspot.com/

Any of these, named best breast cancer blog of 2012- http://www.healthline.com/health-slideshow/best-breast-cancer-blogs#1

Thank you, on behalf of all women currently living with Breast Cancer, for helping us spread meaningful and useful information about this.