When I was diagnosed with testicular cancer at the age of 28, it was 1998 and I was in the midst of my internship training in medicine. I will not forget the pit in my stomach when I found a mass in my testicle, or how I put off fellowship for a year waiting to see if my surveillance routine would steer me towards more therapy, or the stress of having inadequate life insurance with a wife and new family. And despite my medical training, I discovered important knowledge gaps that I shared with patients, providers, and cancer researchers.
I did not know that cancer was and is the #1 natural cause of death among young adults, and I had not considered that we may face unique types of cancer with unique biology compared to other age groups.
Despite high rates of survival, I did not know that unlike younger and older groups, there has been no real change in the rate of survival since the 1970?s, and that childhood cancer survival rates passed those of young adults during that time. There has been a lack of research efforts aimed at explaining these survival gaps.
I learned quickly that I had needs to find support for dealing with cancer as a young adult, from banking sperm to managing finances to finding other patients who had gone through this and could share my concerns and fears. There has been a lack of providers trained or centers structured around the unique needs of young adults (as there are for pediatric or geriatric cancer patients).
A decade later, I have immersed myself in tackling these gaps, through my career as a medical oncologist and director of the Adolescent and Young Adult (AYA) Oncology program at the Knight Cancer Institute at OHSU, and as the medical co-chair of the LIVESTRONG Young Adult Alliance. The Alliance task forces are aligned to strategically address these gaps.
Consider cancer is the message of the Awareness task force. Cancer occurs in young adults, and failing to recognize this simple fact can lead to delays in seeking care or in establishing a diagnosis. The 100+ member organizations of the LIVESTRONG Young Adult Alliance are changing this through efforts such as this National Young Adult Cancer Awareness Week.
Through the work of Science task force members and a partnership with the National Cancer Institute, the Alliance has published recommendations for stimulating scientific investigation in young adult cancers and this summer will convene a biology workshop to investigate the distinctive biology of AYA breast cancer, colon cancer, and acute lymphoblastic leukemia. Researchers are active in retrospective analysis of existing databases, and the Alliance is establishing six AYA biorepositories within the US to collect and catalog tumor specimens for new studies.
With over 100 member organizations in the Alliance, we are in a position to best understand the needs of AYA cancer patients and design the standards of care required to best serve them. The Standards task force has produced a position statement outlining training requirements for health professionals to achieve excellence in the care of young adults with cancer. Efforts are also focused on patients rights and on criteria of AYA cancer centers to establish AYA Oncology standards.
This is a great start and this week we celebrate these efforts. I?m excited to say that the partnerships fostered and works performed within the LIVESTRONG Young Adult Alliance are leading to a transformation in the way we approach all aspects of cancer in young adults. We are an inpatient group, and will continue to boldly move forward with the help and encouragement of the 70,000 young adults who will face a new cancer diagnosis in the US this year.