I was diagnosed with Stage IIB Nonseminoma Testicular cancer in November 2016, at the ripe old age of 25. Along with surgery and chemo, I encountered the burden of the emotional journey that a cancer diagnosis includes.
Much to my wife’s chagrin, I’ve never been one to talk about my emotions. Blame it on society, my own stubbornness, or whatever other factor you want to point fingers at, but when it comes to my feelings, you’re not going to get much from me beyond “I’m fine.”
A cancer diagnosis, the treatment process, and the transition from cancer patient to cancer survivor brings a host of challenging changes with which AYAs need to deal. In the midst of these challenging changes, AYAs are trying to grow up. This combination of changes and transitions makes it critical for parents and guardians to be aware of how important communication is, and how necessary it is to consider the needs of AYAs, as well as what will be most beneficial to AYAs’ development, when communicating.
Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood. Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families. Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship. His goal is simple: to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.
Over the past few months, I have been working as a health coach in a program for Adolescent and Young Adults (AYAs) with chronic illness, including AYA cancer patients and survivors. My job has been to help them work through limitations imposed by their illnesses, as they try to reach important goals they have set out for themselves. After a few weeks of coaching, I and the other coaches I work with, noticed a trend: every single one of the patients being coached through the program felt uncertain or confused about how to communicate with their health care providers (HCPs). This made them frustrated or nervous on more than one occasion, and those communication struggles often left them feeling like they did not have full control over their care.
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.