Silent No More: Women with Metastatic Breast Cancer Surveyed

By Musa Mayer

What have you heard lately about breast cancer?

Maybe you’ve participated in one of the many breast cancer walks and runs, or you’ve heard an upbeat spin on recent medical research, or you’ve picked up a brochure from one of the hundreds of organizations that offer information and support to breast cancer patients, seek research funding, and fund mammography screening. Maybe you’ve even written a check to one of them this past year. Or maybe you yourself are a survivor.

Chances are, despite all the information out there on breast cancer, there is one group of patients you have not heard much about: women (and some men) who live with metastatic breast cancer.

Living with Metastatic Cancer

Until recently, women living with metastatic disease have remained largely silent and isolated, rarely speaking out publicly. Many have found that talking openly about what they are facing makes people uncomfortable. They worry about frightening other survivors who live in fear of recurrence and whose needs and concerns are different.

“People tend to shy away from me when they find out about my disease,” May Terry reports. “I like to be charitable and assume it’s because the thought of it scares them, but sometimes I think they believe I must have done something wrong to ‘deserve’ it.”

And let’s face it: metastatic breast cancer is scary—especially because it’s an eventual reality for 30 percent of women diagnosed with early-stage breast cancer.

All but a very few patients will suffer progression as metastatic disease spreads and will ultimately die of the disease. Yet there is another side to the story: although metastatic breast cancer is not currently curable, it is treatable. According to Fatima Cardoso, MD, co-organizer of ABC1, the First Advanced Breast Cancer International Consensus Conference, to be held later this year, multiple lines of treatment have increased median survival from two to three years in the past decade.1 What this sobering statistic actually means is that half of all patients diagnosed with metastatic breast cancer will live longer, often for many years, if the cancers happen to be slow growing and responsive to treatment. During much of this time, despite having to manage side effects of treatment, those diagnosed with metastatic breast cancer manage to live fairly normal lives. But the disease clearly takes its toll, as they and their families are burdened with tremendous emotional, social, and spiritual challenges.

Women Share Their Stories

In an effort to learn more about the challenges facing women living with metastatic breast cancer and to better serve the survivor population, two surveys asked women to describe their needs and experiences. I served as co-author of both surveys.

First, in 2005, Living Beyond Breast Cancer (LBBC), a support organization based near Philadelphia, Pennsylvania, secured funding to conduct a needs assessment to guide an expansion of its services. The resulting report, Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources, reflects the voices of 618 women living with Stage IV breast cancer who filled out an online questionnaire. Here are some of the key findings:

  • As might be expected, these women were highly motivated to seek information about the disease and its treatments.
  • Although they were Internet users, one-third reported difficulty finding the information they sought and were unaware of existing programs.
  • Information seeking played a crucial role in managing the disease and directly correlated with lowered levels of depression, anxiety, pain, and sexual difficulties.
  • As evidence of their coping skills, despite many symptoms and side effects fewer than 20 percent found it difficult to maintain daily routines and activities.
  • Reporting high levels of emotional support from family, community, and their medical teams, these women particularly valued their contacts with other women living with metastatic breast cancer, whether in online communities, as “chemo buddies,” or in support groups.

Though the LBBC report offered valuable information about the experiences of women living with metastatic disease, the findings were limited by the relatively narrow population of women who took the survey. The demographic information collected about participants confirmed that these Internet users were not ethnically or racially diverse. Compared with women in the population as a whole, they tended to be younger and more affluent, highly educated, and likely to be insured.

Knowing that it was essential to sample a broader population, with the support of Pfizer and the assistance of Harris International, we next undertook a global survey of women with metastatic breast cancer. In 2009 the BRIDGE (Bridging Gaps, Expanding Outreach) survey studied women with metastatic breast cancer from Australia and 13 countries in Europe, North Africa, and North and Latin America. All were referred by their doctors, and, to ensure diversity, no doctor could refer more than five patients. Overall 1,342 women were interviewed for the survey. Key findings from this broader study include:

  • Accurate, easily accessible information was strongly valued by BRIDGE survey participants, most of whom played active roles in their treatment.
  • Stigma associated with the diagnosis was suggested by the relative lack of public attention metastatic breast cancer received. In all but Egypt, Mexico, and Venezuela, women told us that early breast cancer got far more attention; this was especially true in the United States.
  • While most felt supported by at least one person in their “inner circle” of family and friends, 38 percent were fearful about talking openly about the disease, and nearly half said their friends and family were uneasy discussing it.
  • On learning that the breast cancer had spread, most of these women said they felt scared, confused, depressed, angry, and alone.
  • Maintaining good quality of life and coping with side effects and symptoms mattered to them.
  • They worried that they would not be able to take care of their families, about care at the end of their lives, and about dying.
  • While 59 percent acknowledged the profound negative impact of the disease on their lives, 74 percent said they were still able to enjoy life.
  • As in the LBBC survey, these women showed remarkable resilience.

A Meaningful Life Is Still Possible

Information gathered from these two surveys is already being used to provide necessary resources for women living with metastatic breast cancer, supporting them in living full lives despite the disease.

Knowing that a meaningful life is still possible after a metastatic diagnosis can help ease survivors’ fears of recurrence. It did so for me when I began advocating for women with metastatic breast cancer five years after my own Stage II diagnosis. In the 17 years since, I have continually been inspired by the strength and the adaptability displayed by women living with metastatic disease.

In the United States at least, the stigma surrounding metastatic breast cancer is beginning to recede as more organizations offer dedicated services. Thanks to patient-driven organizations like the Metastatic Breast Cancer Network (www.mbcnetwork.org) and METAvivor (www.metavivor.org), women living with metastatic disease are increasingly making their voices heard, gathering at conferences, advocating for research specifically focused on metastasis, and supporting one another in online communities like BCMets.org. Even “Pinktober,” as some refer to the annual fall blitz of breast cancer awareness, is beginning to change. Last year October 13 was declared National Metastatic Breast Cancer Awareness Day.

references

1. Beishon M. Where are the consensus guidelines for women with metastatic disease? Cancer World. Available at: http://www.cancerworld.org/Articles/Issues_41/Spotlight_on%A7%A7%A7/Where_are_the_consensus_guidelines_for_women_with_metastatic_disease%3F.html. Accessed June 17, 2011.