Karen Shayne and Judy Pearson, two women cancer survivors living in different states, who had had different types of cancer, as well as different careers, have come together to create the Women Survivors Alliance for all women who have battled cancer.
Healthline sat down with Shayne and Pearson to find out what makes women's experiences with cancer unique, as well as what kind of support women cancer survivors need.
Shayne is a healthcare administrator and a 26-year cancer survivor. At age 20, she was diagnosed with uterine cancer, which spread to her ovaries. Pearson, a published author and freelance writer, is a three-year survivor of triple negative breast cancer.
Pointing out that she lives in Nashville, Tenn., and grew up in northeast Georgia, Shayne said, “Judy was raised in southwest Michigan. She and her husband live in Chicago. We have two incredibly different lives that came together because of survivorship. The common denominator that brought us together was getting cancer and navigating through the murky waters of survivorship.”
A Meeting That Changed Their Lives (and Others) Forever
Pearson told Healthline that in 2012, she was experiencing many survivorship issues and decided it was an interesting topic for a magazine article. “I was interviewing a doctor in California who said she’d heard about a woman who was planning a survivorship event for women. She gave me the name of the event. I Googled it and found Karen,” said Pearson.
With a total of three different types of cancer between them, Shayne said, “The reason the alliance was created was to deliver educational materials, life application, and motivation to women of all cancers, not just one cancer specifically. There are so many silo cancer organizations, and understandably so, because many of the foundations are connected to research. I wanted to create a place for women to go, no matter what kind of cancers they have, to celebrate survivorship, and try to transform survivorship into a movement.”
Emphasizing that cancer doesn't end when treatment ends, Pearson said, “You are forever changed by that cancer diagnosis. It’s like a line in the sand of your life. Many women go home from treatment and just sit on the bed and think, oh my gosh, what am I supposed to do now? What if it comes back? What do I do with all these physical and emotional issues I'm facing that my diagnosis and treatment has brought up?”
As a healthcare administrator, Shayne understands the difficulty of funding survivorship programs through hospitals or other organizations. “There’s no profit margin, so from a hospital perspective it’s hard to create a good survivorship program. Most of them that are in existence are geared specifically to breast cancer. We’re trying to give a voice to women survivors for all cancers,” said Shayne.
Let the Convention Begin
Last year, Women Survivors Alliance kicked off its inaugural annual convention, which drew 847 attendees who had 26 types of cancer. Participants hailed from 49 states and five countries. The second annual Women Survivors Alliance convention is slated to run July 31 to August 2, 2014, in Nashville.
“The definition of a survivor is from the point of diagnosis. We consider everyone, from those newly diagnosed, those still in treatment, those living with metastatic disease, as well as those who are decades out of treatment, as survivors. We had all of those people last year at the convention,” said Pearson.
Armed with the motto, “Education, Motivation, and Life Application,” the convention featured empowerment sessions and practical instruction on all aspects of survivorship. “We talk about nutrition, exercise, fear of recurrence, financial, and legal issues. We also celebrate. No matter how much time you have, whether you have cancer or not, you have a finite amount of time. We want to make sure women have fun. We started the event with a pajama party,” said Pearson.
How Are Women Cancer Survivors Unique?
Shayne said she has seen that women tend to heal through community. “We are not afraid to ask questions. We are not afraid to demand answers. When women are empowered to do that, they end up solving their own problems. They develop their own care plan. It’s not the same with men. We figure out the issues we face,” said Shayne.
Shayne continued, “Women face incredibly different issues from men, from a physical, psychosocial, mental, and sexual standpoint. We have issues that men typically don’t have. Judy and I have two different kinds of cancers, at two different times of our lives, yet we have the very same issues. We realized at the convention, that once women begin networking and talking, they have figured out how to navigate and create their own survivorship program moving forward.”
One of the unique challenges women cancer survivors face is dealing with their self-image. Pearson said, “If you had a cancer requiring surgery, your body landscaping changes considerably, whether it’s a mastectomy or scars from abdominal cancers. Women are far more willing to discuss that in the open with strangers than men are. We communicate. We heal through community, but we also are very much in tune to communicating to solve problems.”
Financial worries are also a burden for women cancer survivors. “All diseases are expensive. Cancer is no different. If you have great insurance that pays for your treatment that is wonderful, but it’s not everyone’s case. The treatment often causes cognitive difficulties, such as Post Traumatic Stress Disorder (PTSD) symptoms, chemo brain, fogginess from the chemicals, and fatigue, which carry forth long after the treatment is over. Those things impact employment and the ability to earn a living, and women are paid less than men, so it impacts their ability to support themselves and their families. There are lots of single moms who are cancer survivors, who often have to make the choice between treatment and buying food,” said Pearson.
Shayne added, “Women have to continue to be mom. They have to continue to be daughter. They are the ultimate caregivers. When they have to have someone take care of them, they still have to make sure the kids are fed and get to the soccer game, that mom is taken care of in the nursing home, and that their husband has what he needs. It is incredibly difficult and is something else women are left to juggle in a time of their life when they don’t need to be juggling it.”
Three Purple Ribbons to Cheer For
The alliance’s co-founders have three venues that offer women cancer survivors help with these issues. Dubbing them three ribbons of support, the first is the convention. The second is a digital magazine called theplum.org, which features articles on nutrition, exercise, finances, skin care, sex, and motivation. The third is called, My 2nd Act, which invites women to upload essays on www.survivorssecondact.com, about their life after cancer. In 2015, My 2nd Act Stories from the Stage, a fundraiser, will feature women in different cities presenting their five-minute essays.
Having connected with numerous cancer survivors, Healthline asked what advice Shayne and Pearson have for survivors going forward.
Shayne advised, “Don’t rely on your doctor or healthcare professional. Sometimes, unfortunately, they could be difficult decisions you have to make for your own life. Create your own care plan and your own second act.”
Pearson offered these words, “Don’t feel like you are alone. So many women feel their issues are unique and they feel isolated. That is so not true. Women said over and over to us at the convention, this is a place where I can belong. It’s an instant sisterhood.”
It’s apparent that Shayne and Pearson practice what they preach. In their second act they have put their careers on hold to help others. Shayne said, “Judy and I have the similar experience of going home when treatment was over and saying, who am I? It’s at that pivotal point in their life that women come to conclusions as to what they need to do with their lives and how they can make their lives better. We see a great opportunity. Both of us have put our lives and careers on hold in order to create this entity. We are an all-volunteer organization. We really believe in what we are doing.”