MyOncofertility.org: A Web-Based Patient Education Resource Supporting Decision Making Under Severe Emotional and Cognitive Overload

Abstract

As these scenarios illustrate, cancer patients and their families face a crucible of high-stake decisions during a time of extreme stress. They must cope with the shock and fear that attends a cancer diagnosis and navigate a complex set of treatment options. Then there is the often neglected issue of fertility preservation (FP) for those of reproductive age. Many cancer treatments, including surgery, radiation, and chemotherapy, carry significant risks of irreversibly compromising a patient’s fertility. Patients are often unaware of these risks and in far too many cases, their health-care providers (HCPs) do not adequately inform them of these risks or available fertility preserving or sparing options.

Kristin, a 38-year-old female with breast cancer, was scheduled to begin treatment a week after receiving her diagnosis. Although she was in a four-year-long relationship, she had never thought about having kids. Kristin was told that embryo banking (IVF) was the best option for fertility preservation, and she had to decide immediately if she wanted biological children in order to start an egg-retrieval cycle. Because no other options were provided and she was uncertain about freezing embryos with her current partner, she ended up foregoing fertility preservation prior to the treatments that ultimately left her infertile.

Ethan, a 19-year-old male, was in the hospital for four days awaiting surgery to remove a pelvic sarcoma. The surgery required removal of his testes rendering him infertile. During those four days, no one talked to him or his family about sperm banking, even though it could have been accomplished in a matter of minutes.