'Pinktober': What Breast Cancer Awareness Month means to patients

Hutch News

'Pinktober': What Breast Cancer Awareness Month means to patients, care providers and others

Some see it as invaluable for education and advocacy while others, including male breast cancer patients, may feel left out

Oct. 12, 2017
Crowd of pink

“Pinktober” has arrived and with it a bevy of walks, runs, rallies and other events to promote breast cancer awareness.

Photo by D.J. Peters / AP

Editor's note: In October 2014, we asked a few patients, researchers, caregivers and others to send us their thoughts regarding Breast Cancer Awareness Month. We've made a few updates to share their thoughts with you again today.  

It’s October and the traditional fall colors are everywhere. We’re not talking about red and orange, but various shades of pink, the color of Breast Cancer Awareness Month, or BCAM.

Founded in 1985 by the American Cancer Society and the pharmaceutical company now known as AstraZeneca (maker of several anti-breast cancer drugs), Breast Cancer Awareness Month and its accompanying pink ribbon are now synonymous with the month of October.

In fact, many people (including breast cancer survivors) refer to the month as “Pinktober,” some with affection, others with a dash (or more) of disdain.

The long-standing awareness campaign definitely means different things to different people. For some, it’s about celebrating strength and survival. For others, advocacy and a push to educate people about the realities of breast cancer, particularly metastatic disease. Researchers may think of the many donations that help to fund their invaluable work. Others are concerned about “pink profiteering.”

Curious what Breast Cancer Awareness Month means to those in the trenches with the disease, either fighting it, living with it, helping patients navigate it or tirelessly working towards its eradication? Read on:

Dr. Karen Syrjala

Fred Hutch clinical researcher and co-founder of the Survivorship Program, Dr. Karen Syrjala.

Fred Hutch file photo

There's no question that awareness of breast cancer survivors' concerns has grown exponentially in the past decade. Not only are survivors speaking out and using the power of their shared voices, but oncologists and other health care providers are listening and wanting to learn how to meet these needs. For myself there is nothing more rewarding than to see women who have gone through treatment sharing their stories and the paths that have worked for them, and hearing other women inspired with a new-found momentum and sense of community when they realize that other people really know what they're experiencing. I'm inspired by the breakthroughs we are making almost daily as we research the complications, causes and solutions to long-term problems after breast cancer treatment and see these translated into the lives of women we see  solutions to pain, fatigue, fear, sexual difficulties, cognitive problems, reclaiming the strength and health of their bodies. But frankly, we still have more work to do, and we need to be able to prevent these problems and treat those we can't prevent yet.

— Dr. Karen Syrjala
co-director of Fred Hutch’s Survivorship Program

While I truly believe that it's very personal how we survivors and warriors feel about the pink overload, this much is true: With every ribbon, every balloon, every slogan, I remind myself how lucky I am to be here still fighting, mouthing off and kicking ass. I will wear the “pink badge of honor” every day this month as I have for the past seven years.

—Jennifer Pellechio-Lukowiak
breast cancer survivor and author of “Does This Outfit Make Me Look Bald”

I’m a male breast cancer survivor and would love to see a man in blue in the sea of pink on national TV. It hurts me to see just pink this month. It isn’t just pink anymore. It is about finding a cure for all, whether it is pink or blue.

—Steve Del Gardo
male breast cancer survivor and blogger

It means that breast cancer is getting a lot of attention, which is a lot better than the days when people on the breast cancer walk couldn't use the words "breast" or "cancer" on their banners! But, frankly, as a breast cancer patient myself, it can also feel a bit patronizing and gimmicky.

Dr. Mindy Greenstein
clinical psychologist, breast cancer survivor and author of The House on Crash Corner

AnneMarie Ciccarella

Breast cancer survivor and advocate AnneMarie Ciccarella.

Photo courtesy of AnneMarie Ciccarella

We don't need awareness, we need education. We don't need pink parades, we need progress. Breast cancer is not the great success story it’s hyped to be. It’s just the one that’s been the best marketed.

AnneMarie Ciccarella
breast cancer survivor, blogger and advocate

When I worked as a primary care provider, Breast Cancer Awareness Month meant a flurry of appointments for breast lumps found on first breast self-exams. I also had many phone requests for mammogram prescriptions from women who had been putting that mammogram off but now had a media reminder to schedule. Both types of request provided an opportunity for dialogue and education: What are “normal” breast nodules? How often should a woman get a mammogram?  Has anyone in the family been diagnosed with a cancer in the recent past? When is your well physical due? Now that I work in Cancer Survivorship, I see the gratitude women have for detecting their breast cancers early with those self-exams and mammograms. I hear them encourage other women to get their breast screening done in a timely manner. Increased awareness and being proactive for wellness is a good thing, even if your favorite color may not be pink.

Leslie Heron
nurse practitioner with Fred Hutch’s Survivorship Program

October is here. Stand tall, educate about breast cancer anywhere you can. Tell your story. And remember this: The important thing is not to let ridiculous awareness campaigns distract from the conversation we need to have. Pink is only a color and cure is an illusion. We desperately need more research to turn breast cancer into a manageable disease for all women, not just some. To this day some 30 percent of ALL breast cancer patients will go on to develop metastatic, or incurable disease. That’s what’s important.

—Jody Schoger
co-founder of #BCSM, breast cancer social media and patient advocate

(Editor's note: Jody died of metastatic breast cancer in May 2016)

Kiranjit Dhillon

Breast cancer survivor, former Fred Hutch researcher and director of scientific programs at the Rivkin Center for Ovarian Cancer, Dr. Kiran Dhillon.

Photo by Bo Jungmayer / Fred Hutch News Service

I think that one of the key things for people to understand is that we’ve made a lot of progress but there’s a lot more work that still needs to be done. I work in the area of chemo resistance and work with the bad types of cancer, the stuff that won’t go away, the drug-resistant cancers. We need the support from the community to be able to do that work. When we see people come out for marches or walks and we see all those survivors, we know that they are huge advocates and research has made such leaps and bounds because of support of these patient advocates. Also, I probably throw around the words breast cancer or cancer a hundred times a day in the lab. But you don’t see the people on the other side. We don’t see patients the way clinicians do. Seeing those patients, hearing their stories, really helps keep us on target. It helps us know what it is and why it is we’re doing what we’re doing. Everyone has someone in their family who’s been affected by this. Even me.

Dr. Kiran Dhillon
breast cancer survivor and former clinical researcher at Fred Hutch

Breast Cancer Awareness Month has done an enormous job of kickstarting fundraising for breast cancer, which has in turn fueled research and awareness for breast cancer. As a colon cancer survivor, I’d love to know how to harness similar energy for colorectal cancers, which may not be as sexy, but kill more people than breast cancer. I’m sure patients and survivors of other cancers feel similarly. As a fundraiser, I think BCAM is a great opportunity to let donors know that they can have the biggest impact by giving locally. More of their contribution will be used for research when given directly to research centers like Fred Hutch, instead of through granting agencies. I also think that while the history of BCAM may be controversial, it’s opened a dialogue about how best to “do” philanthropy. If the public becomes educated on where their dollars go, they make investments that more closely align with their passions, and that’s always a good thing.

Dr. Elizabeth Prescott
colon cancer survivor and director, corporate and foundation relations at Fred Hutch

As we transition into Pinktober, I would like to urge people to please use discretion with regard to pink ribbon marketing campaigns touting breast cancer support (verify where proceeds go) and to scrutinize products, as many are actually harmful contributors to breast cancer, such as hormone interrupters. And as a reminder, there is NO cure for stage 4 breast cancer (the type that kills) and less than 2 percent raised by all breast cancer organizations in North America go towards this cause.

Summar Breeze Ruelle
metastatic breast cancer patient and advocate
(Editor's note: Summar died of metastatic breast cancer in October 2016)

What Breast Cancer Awareness month means to me is a heightened thought process of “Cancer is real.” And that we need to continue advocating for ourselves as community members, we need to continue to work with research centers like Fred Hutch, we need to continue to empower organizations like Cierra Sisters and we need to make sure that we know our bodies in a way that when we feel a difference, we make the doctors take notice and take action. If it happens to be breast cancer, we’re able to find it at an earlier stage and that gives us a greater opportunity to continue to live and take care of our families and take care of ourselves.

Bridgette Hempstead
breast cancer patient, advocate and founder of Cierra Sisters

Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at dmapes@fredhutch.org.

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