Rights or Rhetoric? Breast reconstruction and the yet-to-be-tapped market of breast cancer survivors

I get public relations pitches every day about the latest breast cancer fill-in-the-blank. I usually delete them as soon as they come in, but last week I lingered on one longer than usual. The pitch said that Dr. Allen Gabriel and The Pink Lemonade Project, along with Alaska Airlines and Starbucks, were inviting me to learn about “[my] rights as a breast cancer survivor by joining BRAVE day (Breast Restoration AdVocacy Education).” I guess the publicist didn’t know I was never diagnosed with breast cancer.

In addition to flyers, the materials included a bookmark listing breast cancer survivors’s rights. They/we have the right:

  • to seek advice from trusted health care professionals,
  • to have insurance companies pay for mammograms,
  • to access reconstruction following surgery (which may be paid by insurance),
  • to hope, healing, and happiness during the breast cancer journey.

I thought about what was missing from the list. Evidence based information, safe treatment, access to medical records, second opinions, information about my condition and treatment options in a language I understand, financial assistance, employment rights, mechanisms of redress, survivorship plans, insurance coverage, that politically contested notion of affordable care. More rights would come to mind if I thought about it. But I don’t need to. The information and festivities for BRAVE day (food, entertainment, and pink swag) make it clear that one right, an unstated right, rules them all. The right of breast cancer survivors to be marketed to — by a doctor, a nonprofit organization, and two corporations.

Women Citizens/Pink Consumers

For more than 30 years feminist and women’s health advocates helped to transform the social and medical landscape for breast cancer. In addition to putting women’s health on the map, they helped to de-stigmatize the disease, promote solidarity among some groups of women, change medical protocols such as the drive-through mastectomy, increase federal funding and consumer input for breast cancer research, and elevate the social status of the survivor. Throughout this arduous process, they promoted the validity and proliferation of resources for self-help, mutual support, and patient advocacy.

Knowing one’s rights as a patient certainly falls within the advocacy framework. However as pink ribbon culture came to focus on the upbeat, life-changing aspects survivorship, it opened a new consumer market for survivors, supporters, and at-risk women. The empowerment/awareness context now easily commercializes almost every aspect of breast cancer (i.e., awareness, risk, prevention, diagnosis, treatment, survivorship, research, support, propped up with a seemingly endless plethora of pink products and a vast array of medical interventions. With the number of breast cancer survivors reaching nearly 3 million in the United States this year the market is large enough to absorb the marketing.

In addition to the personal and medical relevancy of cosmetic surgery, reconstruction services (framed as awareness, empowerment, well-being, or even rights) are a massive consumer market. Plastic surgeons conducted over 14.6 million procedures in 2012, up from only a few hundred thousand in the 1980s.

According to the BRAVE day publicist who sparked my interest last week, less than half of the patients diagnosed with breast cancer have reconstructive procedures. What she did not say is that the number of plastic surgery procedures increases 5 percent every year (up 98 percent since 2000), that the more than 96,000 breast reconstruction surgeries in 2011 represent a 22 percent increase from the 79,000 procedures done in 2000, and that women have 91 percent of all cosmetic procedures (with breast augmentation topping the list since 2006). The 232,340 new cases of invasive breast cancer plus the 64,640 new cases of noninvasive carcinoma in situ this year could mean record profits for an industry that relies on beauty ideals and women customers. 

According to an article in the Journal of Clinical Oncology about 42 percent of women diagnosed with breast cancer between 1998 and 2003 in the United States had unilateral or bilateral mastectomy. Most women having these procedures would have the option of breast reconstruction through implants or tissue transfer using one’s own body tissue to create a breast mound. The medical community has made strong claims about the psychological benefits of having such reconstructive surgeries. But some studies call this logic into question, finding no difference in psychosocial adjustment based on type of surgery, or learning that quality of life is more influenced by a woman’s age or exposure to adjuvant therapy. If reconstructive surgeries are not necessarily the key to psychosocial adjustment and quality of life after breast cancer, are some women feeling pressure to have these surgeries when they might otherwise want to opt out?

A study in the Psychology of Women Quarterly reported that sexual minority women face considerable pressure to have reconstruction, and those who decide not to have surgery often feel like they have to justify their choices to their doctors. The researchers argue that these women’s reasons for and against the surgeries highlight sexist and heterosexist assumptions within the medical management of breast cancer, and particularly mastectomy. As Naomi Wolf points out in The Beauty Myth such assumptions affect women in general. Wolf questions whether cosmetic surgery is really a choice in a society that reduces women to their sexual usefulness and appearance. For women diagnosed with breast cancer, societal expectations to look and act the part of the thriving breast cancer survivor/fearless warrior (while appealing to some) may add to these pressures in ways that are just as disempowering as those from decades ago that forced women to keep breast cancer hidden beneath a veil of secrecy.

Ideally, medical decisions would be grounded in a clear body of evidence, access to quality care, and respect for patients’ personal values and preferences. I know women who have had reconstruction after breast cancer and women who have opted out. Is one group braver? More aware? More empowered than the other? No. Is one group more valued than the other? In this historical moment…yes.

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Originally published March 31, 2013 at Psychology Today »

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5 comments to Rights or Rhetoric? Breast reconstruction and the yet-to-be-tapped market of breast cancer survivors

  • Mary

    I, personally, decided on reconstruction with the caveat that all be done to keep me small breasted as I was unused to wearing a bra and didn’t want to start. I do not regret doing it. Frankly it is a convenience. It does not make me feel “more whole”. I still went through the trauma of having a breast amputated. Reconstruction can never make that OK as far as I am concerned. I do not consider myself a “warrior, survivor, thrivor” or any of the other euphoniums foisted on me by the “pink society”. At my last appointment my oncologist congratulated me on being a survivor. I told her that I can’t realistically use that term until I die of something else. My answer was not well received. What an ingrate I am!

    I do the best I can. I volunteer at a nursing home, lead an active social life, aid a husband with Parkinson’s and enjoy 2 grandkiddies and my wonderful healing vegetable gardens. That is the life of one who lives with the specter of cancer every day, much the same as the lives of many people. However, breast cancer has not made me a better more courageous women. I was those things long before breast cancer and I am definitely not grateful for the experience. No it has not made me better it has caused me considerable pain and humiliation because of the barbaric treatment still used to “cure?” it. If I sound bitter it is because I am, bitter at the constant celebration of a disease that causes so much suffering.

    Forget the accolades, the “pink” everything and especially the “pink frosted” doughnut in Dr. Bruner’s add. Good lord looks like a pink breast with a hole in the middle.

    Thank you, Gail, for continuing to lend the voice of reason to breast cancer and forcing a look at its true meaning, consequences and the needs of patients. There is just no way we can put “frosting” on this cake!

  • “Ideally, medical decisions would be grounded in a clear body of evidence, access to quality care, and respect for patients’ personal values and preferences. I know women who have had reconstruction after breast cancer and women who have opted out. Is one group braver? More aware? More empowered than the other? No. Is one group more valued than the other? In this historical moment…yes.”
    Gayle, this last paragraph says so much. Sadly, some medical professionals and marketers seem to be more about drumming up business than helping a unique individual arrive at a decision that best fits her. I appreciate that my surgeons weren’t pushy when it came to discussing reconstruction options. But I know others who had a different experience. No one wants to lose a breast (or 2) to cancer. But more importantly, no one wants to lose a life to cancer. Lives matter more than breasts. How long will we need to keep pointing this out?
    Thanks for your continuing efforts!

  • Gayle,
    I had not heard of this particular campaign. Guess I’m glad I missed it. And yes, their list is pretty incomplete isn’t it? I agree with Lisa’s comment about women who opt out feeling as if they must justify their decisions. Frankly, I find the image of the doughnut covered with pink icing and the mission statement – “Our mission is to make you whole again,” demeaning and perhaps even offensive.

  • Thanks so much for your comments. The advertising to entice customers with pretend accolades and pink icing is very disturbing. And the suggestion that one will NOT be whole, or empowered, or smart, or brave if she chooses a different option is the OPPOSITE of what health activists fought for. We must raise our expectations and demand more. No doubt.

  • Elizabeth

    I plan to have reconstruction. My shoulder hurts from the bra strap with the form, my back from the lopsided weight when I go without it. Not everyone has those problems. I will not be able to have an implant due to radiation damage to skin and muscles, so reconstruction will add more scars. I am also hoping to be able to wear normal bras, sleeveless clothes, and modest scoop necks again. I am quite aware the new “breast” will still have scars and will not have feeling.
    Reconstruction will not make me “whole.” It may make some things easier to deal with, but it will do nothing for the ongoing neuropathy from chemo, the side effects of AIs, the fatigue, the lymphedema. It won’t restore my interrupted career. It won’t change that I have bone mets. Nor is it likely to move my husband out of the guestroom and back into the bedroom where he belongs. He’s gotten a lot of mileage from friends and family on how he has stood by me like some long-suffering saint, but gets quite angry if I leak his secret that he sleeps in another room and refuses to give me any affection.
    Reconstruction can be good, but it cannot make you whole and it certainly cannot give your life back.

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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

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