For me, an AYA (adolescent and young adult) cancer advocate for the past 20 years, World Cancer Day conjures up feelings of passion, patience, persistence and perseverance.
Passion for all those AYA cancer awareness organizations and individual advocates around the world who have campaigned to have the voices of the AYA cancer community recognized, heard, acknowledged and sustained – from prevention education, through diagnosis, treatment, short and long term effects, metastic/advanced stages, palliative care, end-of-life and beyond.
As World Cancer Day 2017 approaches, I am grateful to be able to continue to call myself a survivor. So much progress has been made that makes it possible for me to be the healthy, happy young adult I am now. However, World Cancer Day also reminds me how uneven that progress has been. Scientific breakthroughs have led to better and better cancer treatments that gave back life to childhood, teenage, and young adult cancer survivors, like myself. Yet, that progress is hampered by the fact that every child, teenager and young adult successfully brought through treatment must also successfully transition back to normal life after treatment ends. I feel fortunate to have been provided many different forms of support from many different sources that have helped me with my own transitions, but none of that support was standard care. I personally know so many other survivors who are my age but struggling to build a life for themselves due to challenges they face related to the impact of their treatment. The transition back to normal life, no matter the age group, can be incredibly difficult without proper support and guidance.
by Kate Yglesias Houghton, President & CEO, Critical Mass: The Young Adult Cancer Alliance
Growing up my family spent time teaching us about the obligation to serve others. In their eyes, people of action and empathy were to be admired. In college, it was learning about our political process that made me realize that “service to others” was at the core of our government. Laws to effect change. Policies provide protection. A Thanksgiving basket was an act of service but it was not an act of change. By the time I was wrapping up my final courses I knew how I would serve others as a career: work in Washington, DC.
According to the National Cancer Institute, about 69,212 adolescents and young adults (AYAs) were diagnosed with cancer in 2011 – this is 6 times the number of cases diagnosed in kids who are 0-14 years old (National Cancer Institute, 2014). This makes it kind of obvious that it’s important to have cancer centers dedicated to providing quality care that meets the range of specific needs of AYA patients.
When cancer is diagnosed in younger patients, there are a number of unique issues that need to be considered that older patients do not face. Fertility is one of the most important concerns reported by adolescent and young adult (AYA) patients as many hope to survive their disease and go on to have children in the future. Research focused on fertility in AYA survivors has increased in recent years, but there remains a great unmet need for comprehensive reproductive health counseling at all stages of the cancer continuum; before treatment begins and in post-treatment survivorship care.
Research investigating the impact of cancer upon sexuality, both physically and psychologically, has for the most part focused on the needs of adults. For adolescents and young adults with cancer, however, understanding the impact of cancer upon their psychosexual well-being is incredibly important. A cancer diagnosis during the AYA years may come at a time when a young person is establishing their sense of identity, forming intimate relationships, and becoming autonomous.1 Cancer can make these milestones a little more difficult to reach.