Breast Cancer Consortium Quarterly (Issue 3)

sulik headshot 10-20-15Dear Friends,

Here is the latest issue of the BCC Quarterly, a little later than usual, but full of insightful commentary.

We review recent books and share initiatives to change health care for the better.

We deconstruct yet another screening mammography campaign and point out the conflicts of interest that continue to create confusion instead of clarity around the updated protocols.

We analyze cases of environmental injustice in areas with high concentrations of cancer incidence and mortality, and discuss the highly controversial topic of oncofertility.

And we honor the memory of our friend and colleague Jody Schoger, who died from metastatic breast cancer in May. As writer Nancy Stordahl writes in her memoir: “Cancer is a string of losses, and there should be no shame in grieving for things lost and missed.”

Cancerland is indeed full of grief and loss. This is, most likely, the fundamental reason that there remains, even today, despite copious critiques of the cancer industry in every major media outlet in the nation and increasingly around the globe, an overwhelming effort to sugarcoat, oversimplify, and entertain with pink ribbon brigades and kitschy awareness campaigns. Yet none of this will solve the breast cancer problem. We need truth. Evidence. Action.

Please share or “tweet” this issue, or forward the BCCQ via email to those you think would be interested. Thank you for your support.

Sincerely,

Gayle Sulik, PhD (Founder and Principal Investigator)

*** ANNOUNCEMENTS ***

CRITIQUE-RESIST-REFORM: Feminist Scholar Activism and the New View Campaign, Capstone Conference. Bloomington, Indiana, USA from October 6-8, 2016. Learn More here.


Read the full BCCQ on the web »


IN THIS ISSUE

Book Review of “Reading & Writing Cancer: How Words Heal” by Susan Gubar

coverDiagnosed with late-stage ovarian cancer in 2008, Susan Gubar underwent three abdominal surgeries, three cycles of chemotherapies, radiological procedures, and other conventional medical regimens. Knowing she had an incurable disease, she went into a Phase I clinical trial in 2012. A year later she published Memoir of a Debulked Woman: Enduring Ovarian Cancer in 2013. She also writes The New York Times blog Living With Cancer. In her new book Reading & Writing Cancer the goal is to offer guidance to those who want to use writing as a means for therapeutic self-expression. She writes, “the surprising extension of [her] life has deepened [her] awareness of mutability and mortality and of the need to appreciate and testify to life as it is lived.” May her book do the same for all of us. — by Gayle Sulik More »

“What Worries You” Most About Health Care?

rcaw-2016-badge-336x254During RightCare Action Week  — October 16-22, 2016 — Breast Cancer Consortium supports the RightCare Alliance’s “What Worries You” event, an initiative to re-energize the customary and expected conversation between clinicians and patients. Created by The Lown Institute, a nonprofit, action-driven think tank dedicated to transforming the culture of medicine. More »

Community Book Events for “So Much to Be Done: The Writings of Breast Cancer Activist Barbara Brenner”

cover“Barbara Brenner was anything but silent. She embodied the spirit of Audre Lorde, who believed that ‘when I dare to be powerful, to use my strength in the service of my vision, then it becomes less important whether or not I am afraid.’ Barbara Brenner reminded us that sometimes it takes ruffling a few feathers to dislodge complacency.”

—Gayle A. Sulik, PhD, author of Pink Ribbon Blues

BCC partners Grazia de Michele and Ana Porroche Escudero coordinated a series of Community Book Events for “So Much to Be Done: The Writings of Breast Cancer Activist Barbara Brenner” in the U.K. and, by sharing links and networks, facilitated the organization of similar events in Spain and Italy. More »

Oncofertility: Beyond Biological Motherhood, Towards Reproductive Justice

fertile-action-ad-cropThe field of oncofertility — a word that combines the terms oncology (the study of cancer) and fertility (the capacity to produce offspring) — has done much to put reproductive health on the international cancer agenda and to expand fertility options for cancer survivors. Before the field took hold, women’s reproductive concerns were ignored or disregarded as secondary to cancer treatment. However, the field’s exclusive focus on helping women to become mothers post-cancer may have inadvertently (re)created constraining norms surrounding women’s reproductive health. I propose moving beyond an emphasis on biological reproduction towards a more inclusive redefinition of oncofertility that links motherhood to wider struggles for reproductive justice. — by Ana Porroche-Escudero. More »

Radical Words: “Cancer Sucks”

original-cancer-sucks-button-e1466611827700-620x388In September 1995, Lucy Sherak was diagnosed with breast cancer at the age of 43. A mother of two, she was an occupational psychologist living in Marin County, California. She had previously worked as a recording engineer and was a trained composer. After a mastectomy, Sherak decided not to have a reconstruction or wear a prosthesis. Instead, she chose to wear a button she designed herself made out of white metal and bearing the words “Cancer Sucks” stamped in red capitals on her amputated breast. — by Grazia de Michele, published at History Workshop Online. More »

Inaccurate Claims about the Unequivocal Benefit of Early Detection Persist, Despite Evidence to the Contrary

clarityinfographic-cropAccurate information about the benefits of screening an entire population of women for breast cancer is missing from most awareness campaigns. Yet it is something women with recurrences know firsthand, and what many experienced researchers have been saying for years. In view of the most reliable evidence, the promise of early detection via screening mammograms to ‘save lives’ is a lie. Why, then, do we still see claims about the overwhelming benefits of mammogram screening? — by Bonnie Spanier. More »

Blaming the Southern Victim: A Case in Italy

ilvaDespite active protest against pollution and its ill effects on public health, the Italian minister of health announced in 2014 that lifestyle changes are needed to reduce cancer incidence in an area of Italy known as ‘Land of Fires’ — a toxic landscape where refuse has been disposed illegally for years. In light of an epidemiological legal report highlighting a correlation between factory pollution and an increase in cancers and other diseases, BCC partner Cinzia Greco asks: Why is so much attention being drawn to lifestyle risks in places where the risk of developing cancer due to environmental factors has already been established? — by Cinzia Greco. More »

A Few Words About Jody Schoger

JSchoger2Our friend and colleague Jody Schoger died on May 18th at age 61 from metastatic breast cancer. She learned of her recurrence in April of 2013, following a 15-year remission. In her work with the cancer community, Jody’s supportive and enlightened approach to advocacy helped to guide people through a medical labyrinth that easily overwhelms and too often over-promises. She is terribly missed. We share a few words about Jody, knowing that words are never enough. — by Gayle Sulik. More »

Book Review: Cancer Was Not A Gift, And It Didn’t Make Me A Better Person by Nancy Stordahl

nancy-stordahl-book-cover-200x300Nancy Stordahl is a former educator, breast cancer blogger at NancysPoint, and a friend of mine. I was delighted to get my signed copy of her self-published memoir Cancer Was Not A Gift & It Didn’t Make Me A Better Person, about her personal experiences with breast cancer. Some of these I already knew about from our conversations; others I read for the first time. The book covers a lot of ground in this book, sharing intimate details about her thought processes, medical decisions, personal interactions, and emotional states as she manages the “shit storm” of cancer diagnosis and treatment, all in the aftermath of her mother’s. At times funny and ironic, it’s still not the happy cancer story. But it’s real. And it’s needed. by —  Gayle Sulik More »

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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 **