Redefining Cancer Survivorship

June 2 is National Cancer Survivors Day. For Karen Shayne and Judy Pearson, co-founders of the Women Survivors Alliance, it is also an opportunity to galvanize others to their 365 days-a-year mission.

Shayne and Pearson have both survived cancer. They have joined forces to spearhead a global call to action, reframing the state of cancer “survivorship’ into a movement.

I spoke with each of them by telephone, to get the backstory on their goals, as they prepare to launch the first annual National Women’s Survivors Convention in Nashville, Tennessee (August 22 – August 24).

The tent will be large and inclusive. It will encompass women who have dealt with all types of cancers—without regard to where they are in the process. Partners, known as co-survivors, are encouraged to take part.

Like any conference, there will be keynote speeches and breakout panels. Included will be conversations about: Understanding Your Health Insurance Options and Healthcare Reform; Young Survivor Track; Balancing Work and Cancer, plus the too often overlooked subject—cancer’s impact on one’s sexuality.

A call has been gone out for women to submit a short essay expressing what they have learned from their cancer experience. All submitted entries will be displayed at the convention.

A list of celebrities is lined up to participate. Shannon Miller, Olympic Gold Medalist, is the Honorary Chairperson. In 2011, Miller was diagnosed with a “malignant germ cell tumor,” which is a form of Ovarian Cancer. She underwent nine weeks of chemotherapy treatment. In June of this year, she will be delivering a baby girl.

Shayne had been exploring the concept of a gathering for several years, based on her impression that most conventions were “medically-oriented” rather than “survivorship-oriented.” Having battled Ovarian and Uterine Cancers, Shayne believed that a holistic understanding of the cancer journey was missing.

Shayne met Pearson, and they connected on a visceral level. Pearson, who survived Triple Negative Breast Cancer—which is not fueled by hormones but “is very aggressive,” also wanted to become pro-active. Together, they have partnered on Women Survivors Alliance, nurturing what they refer to as the “Mothership.”

With the goal of “best supporting women survivors,” their plans are ambitious. They didn’t want to be limited to solely an annual event. They knew they had to “build something bigger” in order to deliver a full support network. They are launching a digital magazine, which will be unveiled during the Nashville event. It will feature articles one would expect to see in a women’s magazine—however, it will be delivered through the prism of a cancer survivor.

In addition, WSA will be involved in holding one-day events throughout the year at cancer care centers across the nation. Pearson explained to me that the Commission On Cancer (ACS) had issued a “mandate” stating that all of its 1500 accredited care facilities had to have “a survivor care program in place by 2014.” Pearson noted drily, “When you finish treatment, you are wished well and sent on your way. All of a sudden, you have post-treatment side effects.” Underscoring that not all oncologists offer the same level of compassion and support, she added, “Not everybody gets the help they need. Nobody told me that there would be long-term effects from my cancer drugs.”

Having served as a health care administrator for twenty-two years in both hospital and long-term care settings, Shayne reflected upon the singular insights she has been able to garner from her background. She said, “Because I was both an administrator and a survivor, I had the unique perspective of seeing the issues from both sides of the desk.”

A denizen of Nashville, which Shayne describes as a “friendly and loving town where it’s easy to connect with local stars,” she has received “a huge amount of support from country singers.” In partnership with the Grand Ole Opry, there will be a Salute to Survivors Concert, featuring Martina McBride.

People have signed up for the convention beyond the borders of America. Attendees will travel from Canada, England, Germany, and as far as Australia. The survivors will be part of a continuum from those newly diagnosed—to those who have been pronounced cancer free from breast, ovarian, cervical, uterine, lung, sarcoma, and colon cancers.

Pearson defined survivorship as follows: “It starts at the moment of diagnosis—because that is when you actively begin surviving cancer.”

“Education, motivation, and life application” is one of the team’s key mantras. Another is the takeaway of, “Owning survivorship and creating the best life that you can.”

I asked Shayne for her reaction to the recent public awareness brought to Breast Cancer by the actress Angelina Jolie. She responded, “I think she is an incredibly brave woman who is setting the stage for greater self-awareness for women about their health.”

When Olympic skater Scott Hamilton and country music personality Nan Kelley, both cancer survivors, host the closing concert, the Grand Ole Opry will be bathed in purple light.

Every cancer has a symbolic color.
Purple is the color of survivorship.

This article originally appeared on the women’s health website EmpowHER

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