Tools for Action

A recent discussion on Facebook focused on the need for explicit ways to shape the direction and substance of breast cancer awareness, fundraising, research, and discussion. There are many things we can do to spur the public conversation and the movement in meaningful ways. What follows is not an exhaustive list. It is instead a collection of ideas about where and how to start. Feel free to share your own!

Learn More:

  • Read important books about the history, politics, economics, and social aspects of breast cancer. Make sure these books are in your local libraries!
  • Know, print, and share the myths and truths about breast cancer.
  • Search for evidence-based analyses of breast cancer issues, such as NBCC’s position statements.
  • Consider perspectives about breast cancer that do not make the headlines. Some of these are prevalent in chat rooms and blogs such as those listed in the Cancer Truths links on the sidebar of this website.
  • Evaluate health news stories with a critical eye. Health News Review provides excellent criteria on what consumers need to know in stories on treatments, tests, products, and procedures and why.
  • Identify critical health media focusing on the complexities of breast cancer.

Move Beyond Awareness:

Think Before You Pink:

Ask critical questions about pink ribbon promotions, fundraisers, and awareness activities. Think Before You Pink is a project of Breast Cancer Action (BCA), launched in 2002, in response to the growing concern about the number of pink ribbon products on the market. The campaign calls for more transparency and accountability by companies that take part in breast cancer fundraising, and encourages consumers to pay attention and ask crucial questions.

  • Print and share BCA’s Critical Questions flyer.
  • Post BCA’s Think Before You Pink video.

Join the Conversation:

There is a growing movement oriented to telling the truth about breast cancer and changing the conversation about how we as a society work toward the eradication of this disease. Breast cancer is not pink, and it’s not pretty. This is not a condemnation of anyone who finds meaning in the ribbon or public events. It is a call to broaden the discussion, re-orient the cause toward prevention and life-saving research, and acknowledge the unintended consequences of commercialization, festive awareness activities, and the lack of evidence-based information that makes its way to the public. Add your voice!

Take Part In Research:

Though breast cancer affects 1 in 8 women on average in her lifetime, 7 out of 8 women (the majority) are not diagnosed with breast cancer. Understanding why these women remain cancer free will help to shed light on what causes breast cancer. The Love/Avon Army of Women is looking for volunteers to take part in this kind of research. The initiative is looking to recruit women of all ages, ethnicities, sizes, and shapes; both women who have had breast cancer and women who have not. It also invites male breast cancer survivors and men who have immediate relatives who’ve been diagnosed. For more information, go to www.armyofwomen.org.

  • Post the Army Of Women videos: video 1video 2
  • Post the video about Dr. Susan Love and the Million Women Army

Support Your Local Community and Those Organizing For Change:

  • Contact local organizers of breast cancer activities and events to offer evidence-based information, insight, and the urge to move beyond awareness.
  • Follow your money.
    • Cut out the “middle man” and give directly to organizations.
    • Earmark contributions when giving to organizations with large budgets (i.e., if research is most important to you, then designate your contributions accordingly.)
    • Support the community-based organizations in your state that fill gaps in services, support, and advocacy.
  • Identify organizations that move beyond awareness and support them with monetary and in-kind contributions.
  • Collaborate with hospitals, schools, and community groups to support people with chronic illness.
  • Start a Support Program: Here’s how, from Metavivor.

Share Your Experience:

  • In the comments section, tell us what you did, how it went, and what you would recommend to others about taking action to move beyond awareness.

Note: “Tools for Action” will be a permanent page on Pink Ribbon Blues.

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11 comments to Tools for Action

  • This is great. Sometimes it’s so hard to know what a person can do to make a difference. This is a great list of suggestions. Thank you. I’ll keep doing what I can, when I can.

  • yay!

    Support your local organizations! You can SEE what they are doing!

  • Really great to bring all these ideas together in one place Gayle. Thanks.

  • Gayle, terrific job bringing together tools for action. And thanks for linking to many of NBCC’s resources! One additonal resource is our evidence-based website on breast cancer issues, news, and research at http://www.knowbreastcancer.org. Hope to meet you at our annual conference!

  • Mary

    Thanks, Gayle, these are all great ideas. I belong to the Army of Women and am very enthusiastic about their research projects and have participated in several. I wrote a Letter to the Editor about pink products and the deceptive practices by some companies. It was published. I make a practice of giving locally to the Breast Cancer Coalition. I try to do this with all the various organizations I support. Here, though, is one that was not mentioned. I belong to an online breast cancer board, a very PINK board. I often play “devil’s advocate”. I have taken some heat but, by doing so I have found other members of my ilk who might not have “come out” if not for a like minded member. I, also, feel it is a kindness to let the newer members know the real deal as far as treatments go. I personally turned down AC chemo, Herceptin and AIs (approximately $100,000 worth of “treatment”) because the absolute benefit just wasn’t good enough and I do bring that up on the board. I think it is important for those newly diagnosed to be aware that doing all the treatments does not, necessarily give them a pass in the future. They need to be aware of the, often, serious side effects of treatment that can adversely effect quality of life and could prove worse and more deadly than the disease itself. It is so wonderful to say what is on my mind without fear of recrimination! Be still my heart, I just can’t contain my gratitude for finding this forum!

  • Thanks, Mary. Will you be going to the NBCC conference?

  • Mary

    Unfortunately I will not be attending the NBCC conference. However, I am currently working on a Primer of sorts for those about to be initiated into the breast cancer treatment culture. I believe it includes information not generally at our disposal, from other resources. I have posted it on the breast cancer board, I belong to, and it has been well received. One member asked permission to print it out and show it to her oncologist and is thinking about sending it to the American Caner Society. I am including several points below as examples of what I am trying to convey. These are based on personal experience. I am in the process of coming up with other ways to get this information in the hands of those who need it.
    1.  Ask for copies of all reports including pathology.  breastcancer.org is a good resource as to how to read them.  It is a good resource, over all.
    When I was given my reports to take to the surgeon I found glaring transcription errors in the MRI report.  The cancer was identified as being in the WRONG breast.  I have found discrepancies in other reports as well, including pathology reports.
    5.  Be aware that you may have problems, after surgery, that are not adequately addressed, in the informed consent, as everyone is different and only the most common problems are discussed.  Some after effects of surgery may never completely resolve.  Also, according to universal protocol, you will be asked to give a final verification of the site and procedure after you have arrived in the operating room.  Often, a sedative/amnesiac is given prior to being taken to the OR.  You will be able to cooperate with requests and answer questions but may not remember doing so.  I didn’t know about/remember giving this final verification and only learned I did so, when I asked for the operative notes.
    6.  If you are having chemo, be aware that any fast growing cells, not just cancer cells are affected by the treatments.  This includes the entire digestive tract, including the mouth.  Hair and nails can, also be affected.  Cheno is cytotoxic to the human body.  Many side effects may take years to resolve and some may never resolve.  Ask about heart toxicity.  This is especially important if you are having AC chemo and or Herceptin.

  • Have you seen the book “After the Cure” by Abel and Subramanian? It might give you some additional ideas for writing a primer…

  • Mary

    Thank you so much, Gayle, I will look into “After the Cure” So far I have come up with 12 good points for the “primer”, but could definitely use more input than just my experience.

    This is an anniversary of sorts for me. Five years ago I reluctantly sacrificed my breast at the “alter” of breast cancer. Funny, or not, I find it a less than celebratory occasion.

  • Well, it’s a milestone nonetheless even if it’s not celebratory…and I’m glad you’re here.

  • Mary

    Thanks Gayle, I am probably one of the few who is still in morning at this point, I suppose. Have just not made peace with the brutality of the whole process. That is why I advocate in any forum I can find. I had a nice email from breastcancer.org. They will be changing the name of one of their Xmas fund raisers to something other than. “Baubles for Boobs”. I had gotten an indication to that effect when I commented on the lack of good taste associated with that name after receiving an add for the event at Xmas. I recently sent a nice email to them again with a link to your “Sexualization of BC” pics and I think that sealed the deal. Thank you for the resources you are providing for my continued advocacy!

    I just downloaded my free sample of “After the Cure”. Appreciate the heads up.

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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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 **