Andrew McMahon wrote ...
"You have cancer." Those three little, loaded words. There is nothing to prepare you for the moment they're delivered or for the moments that follow. You just dive in. I was 22 years old when I first heard those words. I am 33 now, and I would be lying to say it didn't take the better part of the last decade to wrap my head around the disease and its effects. When cancer found me, I was carving my path in the world as a singer-songwriter. I had launched one successful band and was in the midst of preparing a solo record that was receiving early buzz. No one plans for illness, and I was no exception. You learn quickly that cancer is an inhospitable house guest: It shows up when you're least prepared and leaves your place ransacked with no money for a maid. Still, I am one of the lucky ones. I made it out alive when so many do not. I had excellent insurance, which gave me access to the best doctors, and my status as a public figure was helpful when navigating the bureaucracies of a flawed health care system. In addition, my family and friends were intelligent, laser-focused advocates on my behalf, shouldering much of the stress associated with organizing and understanding the laundry list of therapies, appointments and clinical trials that would become my life as a leukemia patient.

For many people my age, these resources are not so readily available. In fact, adolescent and young adult cancer patients (ages 15 to 39) are part of a lost generation. Over a 30-year period, AYAs have seen the least improvement in their survival ratings compared to all other demographics of cancer patients. This, despite the fact that cancer is the number one disease killer of people ages 15 to 39. AYAs also face unique challenges that hospitals and care providers have been slow to address. For instance, as a 22-year-old with a leukemia diagnosis, I was shocked to find myself in the middle of a raging medical debate over whether to be treated with protocols built for children much younger than I was or be treated with protocols designed for adults well beyond my years. Systemically speaking, there are relatively few hospitals with programs and environments that cater to the needs of this lost generation, which can lead to patient alienation and poorer health outcomes.

Time and time again, I hear AYA patients and survivors talk about feeling ill-prepared and overlooked by the establishments charged with their care. This is not to indict the hard-working medical professionals who fight alongside these patients, but to highlight that there is an undeniable need for more tailored therapies and care of adolescents and young adults. Often, patients in their teens and early 20s are treated in pediatric wards with babies and young children, while those in their mid-20s and 30s are treated in wards with much older patients. For the majority of my time in the hospital, I was the youngest patient on my floor by nearly 20 years. I cannot stress enough the psychological impact of feeling like an outlier when you are already at your most vulnerable. Furthermore, while there are support groups available for young people in treatment and recovery, it has been my experience that AYAs are less inclined toward the traditional support models popular with older patients. This creates an even more serious need for facilities that centralize AYA patients so they may be treated among their peers, providing opportunities for more organic interaction.

In addition to environmental concerns, the unique needs and priorities of adolescents and young adults include fertility, health insurance, impacts on school and career trajectories, as well as the difficulties posed by reintegrating into society post-cancer. I personally battled depression, post-traumatic stress disorder and drug and alcohol dependencies for years following my treatment. While difficult to admit, I feel it is important that people are aware that a clean bill of physical health is often just the beginning of a protracted psychological battle. Young adult cancer survivors re-enter the world having experienced something few people their age understand. In the wake of trauma, sure footing can be hard to find. AYA survivors, surrounded by peers who are characteristically fearless, are regularly reminded of this point. There is also the assumption that cancer survivors are wiser for their experience and carry with them a new and deeper appreciation of life. While these notions aren't unfounded, they only tell half of the story. In reality, survivor's guilt, indecision and the search for meaning post-cancer can often disrupt one's forward movement. When paired with external perceptions, these feelings can mire an individual's early survivorship in confusion and even shame. For young people with a weaker support structure, these effects can be even more debilitating.

In the years since my diagnosis and remission, awareness of the difficulties facing the AYA population has grown considerably, but there is still a long way to go. Despite the scope and scale of the deficits we face, I can say with great certainty that this generation is resilient, undeterred and will, in my lifetime, generate the research, awareness and support that leads to the improved outcomes we so desperately deserve. Every day, I encounter examples of this determination, and it gives me great hope. I recently met a young woman who was diagnosed in the middle of her pregnancy and forced to deliver early so she could begin chemotherapy. She fearlessly proceeded and received her life-saving therapy all the while caring for her newborn baby. I also have a dear friend who was diagnosed in the middle of medical school. After treatment, she changed her focus to oncology, and is now cancer-free and practicing at the Mayo Clinic.

Over the years, I've visited hospital rooms all over the country where courageous young men and women who have run out of options still speak to me with hope and positivity as they begin their journey into lands unknown. And, through philanthropy, I've met countless individuals whose personal experiences have driven them to create organizations that aim to turn the tide for the newly-diagnosed.

This is not a generation in search of pity; we are searching for action. We seek health care that is tailored to our needs and the kind of focused research that made it possible to close the gap on childhood leukemia, raising five-year survival rates from 10 percent in the 1960s to 90 percent, less than 40 years later. We want to be treated in facilities with people our age and build communities who support and understand us. We want protocols intended for our bodies that tackle the countless unique aspects of the cancers we face. We want to be told the truth about the anxiety, depression and post-traumatic stress that can linger for years after being told we're well again. We want programs that help us to rejoin the world after being sidelined in ways that can leave us trailing behind our healthy peers. We want the troubling statistics of this generation to improve so that more of us can get back to school, work, our families, friends and lives.

We have so much to offer this world, and we are ready for the world to meet us on our journeys through treatment, recovery and survival. We are many, we are gathering and the time has come for our voices to be heard.