The Breast Cancer Story Is Only Half Told: Help Us Shine a Spotlight on the Other Side

The mainstream breast cancer narrative is among the most hopeful public health stories the U.S. has ever seen.

Over the past 30 years, major advancements in early detection, research, treatment and patient empowerment have turned what was once a largely bleak narrative into a story marked by survivorship, transcendence and hope.

From the 2.8 million breast cancer survivors in the U.S. to the steady decline in death rates from the disease[1], there is certainly much to celebrate during Breast Cancer Awareness Month each October.

There’s just one problem with the breast cancer story held by the cultural collective: it’s incomplete.

 As powerful and as positive as the current breast cancer conversation may be, it doesn’t reflect the experiences of the estimated 150,000 to 250,000 people currently living with metastatic breast cancer in the U.S.[2]

That’s why Pfizer, along with five leading breast cancer advocacy organizations, this month expanded our Breast Cancer: A Story Half Told initiative to identify and address public misperceptions around the disease. Building on the efforts launched last year, our latest chapter provides a more personal perspective on the disease by using photography to chronicle the lives of women with the disease.

Metastatic, or stage 4, breast cancer is the most advanced stage of the disease and is diagnosed when the cancer has spread to other organs in the body. As the second-leading cause of cancer death among women, it is an incurable condition that comes with a tremendous emotional toll.

 Not only do women with metastatic cancer face a far different prognosis from women with breast cancer at other stages, they often feel like they’re battling their illness in isolation.

A Pfizer study conducted in 2009, for example, found that 53 percent of surveyed women with metastatic breast cancer reported that their condition received too little public attention. In addition, 38 percent said they were afraid to talk openly about their experience and 48 percent said their friends and family were uneasy talking about the disease. Unfortunately, these same stats still ring true today.

But there’s so much the public stands to learn from the thousands of stories from women who battle metastatic breast cancer every day.

As Jennifer Campisano, one of the women featured in A Story Half Told, said at an event for the initiative earlier this month, “Metastatic breast cancer affects women at all stages of life, from all backgrounds and ethnicities. Cancer does not discriminate. It is a terrifying, life-altering thing, to be told you have incurable cancer, that you’ll always be in treatment. But I want you to also see how each of us are living in spite of our illnesses. Most days, we are thriving instead of cowering. We allow ourselves the freedom to rest and recuperate when we need it, but then we get on with the business of life — caring for our children, grandchildren, communities, gardens, and ourselves.”

Her hope for this initiative – as well as ours – is to change the conversation around this disease so that women with metastatic breast cancer get more solace, support and resources.

Here’s how we can start:

1. Empower those living with metastatic breast cancer.

 Overwhelmed by new information and unfamiliar emotions, metastatic breast cancer patients and their caregivers too often hold back from asking healthcare professionals important questions or voicing concerns. But we must empower them with resources and tools that enable them to become proactive participants in their treatment.  

In the doctor's office, proper training for oncology staff can help promote patient confidence and conversation. And, at home, encouraging patients and caregivers to maintain "journals" that track treatment information and help prepare for appointments can also boost engagement.  

2. Create a new vocabulary for breast cancer.

 The only way to bring women with metastatic breast cancer into the current dialogue is to develop a more inclusive, universal breast cancer language. And to do that, we must start by listening.

More media stories should seek out the perspectives of people with metastatic breast cancer. And, in our personal relationships and communities, we must learn to confront our own discomfort and engage women with the most advanced forms of the disease.

Of equal importance, the clinical world must develop a more precise and accessible way of talking about the disease that engages patients without minimizing risk. Instead of interpreting silence as acceptance, clinicians must ask patients to repeat what they hear. And instead of using vague descriptions or technical jargon, they must learn to use description, provide context and employ compassion.

3. Dispel misperceptions.

Constructing a new conversation for breast cancer also means challenging assumptions and dispelling misperceptions. For example, many people think an early diagnosis can allow even breast cancer in the most advanced stages to be cured. But the reality is nearly 30 percent of women diagnosed with early breast cancer will eventually progress to metastatic disease. Some people also believe breast cancer progresses because patients did not take the appropriate treatments or preventative measures. But preventative steps like mastectomies and mammograms don’t necessarily stop a cancer from advancing.

Misperceptions not only steer conversations into problematic territory, they often stigmatize women when they need the most support. 

4. Foster workplace environments that support women with metastatic cancer.

Finally, we must all create workplaces that actively support women with stage 4 breast cancer.

A poll commissioned last year by Pfizer and Cancer and Careers found that 77 percent of working women with breast cancer, including those with metastatic cancer (70 percent) feel that working aids their recovery. Moreover, 92 percent of healthcare professionals polled in the survey expressed the same belief.

Yet the majority of women surveyed said they had not spoken to someone at work about job modifications, their legal rights or programs intended to help them cope.

Beyond staying on top of laws related to patient rights, discrimination and benefits, corporate executives and managers must identify strategies that enable compassionate and flexible office environments.

It’s not just our responsibility as business leaders, but our obligation as members of society.

To learn more about metastatic breast cancer and the inspiring stories of women living with this disease, please visit www.storyhalftold.com and follow the initiative on Facebook, Instagram and Twitter @storyhalftold.

[1] https://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-key-statistics

[2] https://www.advancedbc.org/node/26