If an inquisitive mind, thoughtful approach and concern for improving lives are prerequisites for a career as a medical researcher, then Catherine Benedict, PhD, is well-suited for her job. All of those traits are readily apparent when Dr. Benedict discusses her current research and relates one of the many patient stories that helped inspire it.
Like others in her situation, this woman was faced with the question of: Who am I post illness? “She did not have the tools necessary to help her answer that question in a satisfying way because the tools didn’t exist. What we are doing is creating them so that women who find themselves in this situation have a methodology that can begin to answer the many questions in a way that is right for them.”
A cancer diagnosis is always difficult but “it is a quite different perspective for young people who are just beginning their life’s journey, compared to older patients,” she said. “The track of my research looks at the quality of life of survivorship. How do couples deal with long-term effects on both the individual and a couple’s family planning when it occurs in a young woman?”
Among the many things cancer does is it: interrupts career development, leaves astronomical debt, has long-term career impact and leaves a life of survivorship that no longer links to one’s peers.
“There is no magic bullet when it comes to solving these issues," Dr. Benedict said. "Even though they’ve beaten cancer, survivorship is something new and foreign and the young cohort of survivors faces unique issues.”
The National Cancer Institute identified this group in particular as having needs that aren’t being met. Young adults face specific, age-related difficulties that older adult and pediatric patients don’t face. There is a clear need for age appropriate resources to address the unique needs of this cohort including support to address concerns about fertility and family building and to facilitate decision-making and planning.”
Dr. Benedict serves on two boards that look to address that specific issue and has informed much of her work: Stupid Cancer — the largest young adult (YA) cancer group in the world and The Samfund — which addresses the financial impact of the disease for young adults.
“Adolescent and YA cancer can be so isolating,” Dr. Benedict explained. “Stupid Cancer comes with a social media app that links people who are of the same age and sharing in this awful disease so they can connect. While at the same time, The Samfund is there trying to help survivors pay for basic necessities and manage medical debit. I think as a group, YAs may be hit the hardest by a cancer diagnosis."
To be sure, cancer in young adults and adolescents impacts education and career. There is greater medical debt and lower income as a result.
“Those are important factors that impact so many things,” Dr. Benedict said. “One of the things I began to focus on was how were survivors trying to have a family? How did they view fertility both before they began treatment and afterwards in survivorship?”
The goal of her research is to understand how fertility decision-making plays out in survivorship so that a resource tool can be created for those who are impacted that instructs them through various stages of post-cancer family planning. Dr. Benedict looks at patient’s life (and that of her family) from a number of perspectives:
“Our solution,” Dr. Benedict explained, “is to create a website that offers support with decision-making. It’s a long-term planning tool that helps survivors think through options, determine what is most important to them and prepare for the future. In doing so, we hope that survivors won’t miss their window of opportunity to have a child or experience undue strain during the process because they are unprepared medically, emotionally or financially. This generation is comfortable with web-based and smart technology and this affords an easy way to reach patients where they are, without having to return to the hospital as a first step.”
With all that has been learned, Dr. Benedict says: “The truth is survivors don’t go back to their old self and they often feel different from their peers. They describe having to learn a 'new normal.' Helping survivors discover what that means and how they relate to the world around them — especially when it comes to family planning — is our critical mission.”