MBCN Year in Review – 2013

December 28, 2013

by Shirley Mertz, Metastatic Breast Cancer Network President

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

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

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

EDUCATING AND BUILDING AWARENESS

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

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

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

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

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

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

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

how do you live

How do you LIVE with metastatic breast cancer?

useyourvoice

Use Your Voice

thingspplsay

Dumb things people say about metastatic breast cancer

caregivers

Celebrating caregivers

 

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

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

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


EMPOWERING

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

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

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

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

livingthereality

Living the reality of metastatic breast cancer

 

livingwithmbc

Living with metastatic breast cancer – MBC Alliance video

ADVOCATING

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

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

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

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

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

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

Sincerely,

Shirley Mertz
President, Metastatic Breast Cancer Network
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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.


Komen campaign for MBC: Commitment?

September 19, 2012

Here is the latest Komen ad : “Komen’s Commitment to Women Living with Metastatic Breast Cancer.” We at MBCN are happy that Komen is continuing its first formal effort to acknowledge people living with metastatic breast cancer and featuring people like us in their ads. (Ironically, few people realize that Susan G. Komen died from metastatic breast cancer.)

We all have a story to tell and we can be inspired in writing the story and in reading others’ stories. Our organization actively solicits stories such as those of Cindy and Bridget, the two people  featured in this Komen ad.  Some stories are inspiring, as those of Cindy and Bridget; however, many stories are of perseverance in the face of uncertainty and discomfort.

Like Cindy, I love to read stories by people who are  living with metastatic disease for a long time–MBCN even has a special section showcasing the stories of those living with mets for 10 or more years. (See http://mbcn.org/get-involved/category/10-years/) But it is an awfully small section– living with MBC for 20 years or even 10 years is rare. While I applaud these uplifting stories, I am a realist at heart. We can’t exaggerate the progress that’s been made in metastatic disease. Despite these outliers and despite our own advocacy efforts, metastatic breast cancer continues to claim 40,000 lives annually in the U.S.; a figure that remains largely unchanged for the past two decades.

Moreover, Cindy’s doctor who said metastatic disease is a marathon vs. a sprint is absolutely correct. But, the Komen ad makes a confusing connection between Cindy’s three clinical trials and being on treatment for life. ALL patients with metastatic disease are on treatment for life; some are good candidates for clinical trials and some aren’t. But they will all get some kind of lifelong treatment. Also, men do get metastatic breast cancer–so the “estimated 155,000 women living with MBC in the U.S.”  should actually read “women and men.”

And then there’s Komen’s commitment to research. Komen proudly announces that they spent $35 million in funding metastatic research over the last six years. That’s great! Millions! Well, wait a minute. This is $35 milllion vs. the $2 billion of the total Komen pie for the last six years. (That’s not a typo: “Billion” is correct.)  Therefore, Komen is spending 1.7% ( round it up to 2%) of the total funds raised for the purpose of metastatic research.

So for every $10,000 raised by Komen, about $200 goes to research to help Cindy and Bridget and all of us with metastatic disease.

In other words, if breast cancer funding were a giant Monopoly board, we are the “Go” square. Everytime Komen passes our corner with $10,000, MBC research collects $200. Well, $200 is nothing to sneeze at, but we’ll never win if we don’t get some real property. Please don’t keep passing us by. Stay awhile–make some real MBC investments. Imagine what we could do if we had the research equivalent of three hotels on Illinois Avenue!

So thank you, Komen, for including our stories and  acknowledging October 13 as Metastatic Breast Cancer Awareness Day. It’s a good start, but we hope it’s just the first step in a plan to really commit to stopping metastases. The best way to honor all of us with MBC and those who are no longer with us, is to seize the day–October 13– as an opportunity to commit to a substantial increase in metastatic research funding. Komen, are you listening? We look forward to your October 13 press release.

Ginny Knackmuhs and Katherine O’Brien


Beyond Pink

September 17, 2012

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

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

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

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

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

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

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

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

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

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

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

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

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


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

September 13, 2012

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

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

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

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

Thank you for your support.

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

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

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

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

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

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

Thanks, Theresa!