Assisting cancer survivors with family planning

Catherine Benedict, PhD, is leading an initiative to develop a long-term digital planning tool to help cancer survivors think through important fertility decisions.

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.

“When I was in graduate school, I worked with a 32-year-old career-driven woman. She was a devout Catholic, who had a 3-year-old daughter,” Dr. Benedict said. “Ten days after finding out she was pregnant with her second child, she received a breast cancer diagnosis.”

To treat her illness, the woman terminated her pregnancy, had a double mastectomy and cancer treatment that left her out of commission for a full two years.

“Two years into her survivorship, she was dealing with the guilt of ending the pregnancy, being an absentee mother and wife, body image issues, and adjusting to both a husband who had stepped into the role as their daughter’s primary caregiver and a daughter who had grown accustomed to that,” Dr. Benedict said.

Those issues may seem more than a little daunting but Dr. Benedict said they only scratch the surface when it comes to family planning for cancer survivors. “It’s like peeling back an onion,” Dr. Benedict explained. “There are so many layers that need to be addressed. It is a complicated and emotionally charged period of a patient’s life.” It is why developing a family planning decision-aid for adolescent and young adult female cancer survivors has consumed so much of Dr. Benedict’s research.

In this specific case, she said the patient’s work life had to be put on hold, negatively impacting both the family’s finances and her career aspirations.

“The family still needed her income (now more than ever) but she was unable to be the same person on the job that she was prior to her illness," Dr. Benedict said. "She wanted to go back to her normal self but every aspect of her life had changed. There was no going back.”

Coping with cancer diagnosis and survivorship

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."

Understanding fertility post-cancer

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:

  • Physically: Have patients visited the appropriate doctors to see how they are doing physically and evaluate their reproductive health? What are their options for having a child using reproductive medicine — including in vitro fertilization (IVF) or surrogacy — or adoption?
  • Emotionally: How are patients coping with infertility risks and how informed are they about their options for having a child? Are there any unresolved emotional issues related to their cancer causing additional distress?
  • Financially: Based on patients’ (and partners’) values and priorities, what are the options and costs? Are patients equipped financially to plan for and manage the costs amidst other financial pressures they may have?
  • Socially: How do patients handle these issues with their partner? Peers? Family and friends? How is this impacting their emotional well-being and how they manage fertility and family building issues?

“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.”

Northwell houses Long Island's longest standing fertility center.

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