by Heidi Adams
The importance of National Young Adult Cancer Awareness Week was brought home to me in the most personal and painful of ways this week. On Wednesday, I attended a memorial gathering in honor of a young woman named Lindsay, whom I had the pleasure and privilege of meeting last year, about a month before she died.
After Lindsay was diagnosed, her friends and co-workers in the country music world rallied behind the (best ever!) slogan, “FTL: For The Linds,” to show their support for her. Since her death, they have continued to rally, turning the slogan into an organization called FTLSarcomaFund.org that has raised thousands of dollars for sarcoma research in her name.
They have found a fitting way to honor her name and spirit, but that doesn’t make any of us feel less hollow, less sad or less cheated for having lost her. And for those of us who work in the field of young adult cancer, Lindsay’s story brings almost overwhelming frustration because she ran up hard against almost every single challenge that we know faces young adults with cancer.
Being a busy, active and invincible young person, she delayed seeing a doctor when she first had unexplained pain and was misdiagnosed even after she finally went. Her eventual sarcoma diagnosis was complicated and never completely confirmed (not unusual in this rare disease that usually occurs in children—not 28-year-old women). There was conflicting treatment advice. She was a relatively new resident in a city far from her established support network, but she was determined to stay there and hang on to her independence as long as she could. She worried about whether she could afford the care she needed as a young person in a young career. She endured a fire hose of information that earned her an overnight PhD in “How to Navigate the Health Care System,” because what 20-something already knows about second opinions, health insurance filings and palliative care? And the list goes on….
Lindsay was special. She still IS special, to many, many people. But her experience as a young person with cancer was not unique, and that is simply not acceptable.
At Critical Mass, we are working fiercely every day to aggregate resources, patients and data so that we can both help and learn from people like Lindsay. We’re building a patient resource platform to capture all the amazing services and resources in our young adult community in one place, and to make it easier for tired, overwhelmed patients to find them.
We’re also advancing the concept of a National Young Adult Cancer Registry to capture young adult patient data in a single place. We think that a population of 70,000 cases a year warrants a closer look at what makes 15-39 year olds different from older or younger patients—everything from their fertility status to their molecular makeup—so that we know, based on evidence, how to best treat and care for them, learn how our system failed them and understand why young adult survival rates have remained flat for the last four decades.
It’s a big, bold vision, but fitting for an organization like ours that incubated at the LIVESTRONG Foundation, where “big” and “bold” happens every day before breakfast. The LIVESTRONG Young Adult Alliance (now Critical Mass) was created in 2006 under the umbrella of the Foundation, marking the launch of the field of adolescent/young adult (AYA) oncology, and imbuing it from the very beginning with the philosophy: “Unity is strength.”
But coming together as a community is just the first step towards radically changing a system that sees young adults as an anomaly in the waiting room. Truly uniting means building bridges, collaborating, sharing information, reaching across the divides of pediatric /adult, community/academic, this cancer / that cancer and focusing on the simple question, “What is the best solution for the young adult patient?”— not as an afterthought but, instead, as the only thought.
Just because the week is over, it doesn’t mean the work is done. But to keep it going is as insanely simple as it is difficult. We have to keep young adults in the front of our minds when it comes to all things cancer. We have to work together on every front. And we have to keep moving forward even when National Young Adult Cancer Awareness Week is far behind us.