Surveying the BC Mets Community – [Survey Now Closed]

SURVEY NOW CLOSED.

Dian Corneliussen-James, also known as CJ, founded METAvivor Research and Support, Inc. in 2007 to increase awareness, support, and research specifically oriented to metastatic breast cancer, or BC Mets.

Although there are an estimated 150-250 thousand people in the United States with BC Mets, little is really known about this population. According to  NCI data the five-year survival rate is only about 20 percent and the average prognosis is two to four years. Metastatic breast cancer accounts for 98-100 percent of the nearly 41,000 women and men who die from breast cancer each year. Beyond these high-level statistics, there is little information on the actual disease and even less known about the impact of BC mets on the lives of those who are dealing with it. CJ is out to change that, and we can help.

This November the Advanced Breast Cancer First Consensus Conference will be held in Lisbon Portugal. The aim of the conference is to create strong international collaboration in clinical and translational research that could lead to faster advances and evidence-based standards of care. CJ is planning to submit a report on the status of BC Mets and constructed a survey to gather information.

The survey — which is available at http://www.surveymonkey.com/s/3TYNY27 — is in depth and inquires about the person’s demographic information, diagnosis, employment, social security disability, health insurance (both within and outside of the U.S.), finances, family issues, support programs, and coping skills. Participation is anonymous, and participants are free to skip any questions that do not apply or that they do not wish to answer.

If you have metastatic breast cancer, please complete METAvivor’s anonymous survey as soon as possible, no later than July 14th.

The survey will be available through July 14th due to conference paper submission deadlines, so please share this survey widely (and quickly) with your communities to encourage the largest possible response rate.

Thank you for your help.

For more information about CJ and METAvivor, see “Dian Corneliussen-James: A Woman On A Mission.”

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“Pink Ribbon Blues”

Paperback includes a new Introduction on fundraising controversies and a color insert with images of, and reactions to, the pinking of breast cancer (2012).


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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

** MORE MEDIA LINKS **
** MORE RADIO INTERVIEWS **