A few weeks ago, I was reviewing emails, and one from the Sylvester Comprehensive Cancer Center caught my eye. I read the email and realized it was an invitation to the Stupid Cancer Summit. The name made me curious, so I clicked into the email and read about the Stupid Cancer Summit. As I read about the Summit, the information piqued my interest so I called the organizer and asked if I could attend. I was given the go-ahead so on Saturday, February 9th I ordered my new mode of transportation, UBER, and made my way down to Miami bright and early.
I got there early, so I took the time to meet the staff and volunteers. I talked to the Executive Director of the Stupid Cancer Organization, Allie Ward. Allie gave an overview of the event and shared that Stupid Cancer was a national nonprofit organization and a leader in young adult cancer advocacy, research, and support. Their goal is to create shared experiences by producing life-changing live events and digital content that end isolation, build community, provide education, and foster meaningful relationships that last a lifetime. The mission is to empower, support, and improve health outcomes for the young adult cancer community.
As I walked around waiting for the event to start, I talk to a few of the volunteers. One young woman told me that she was a cancer survivor of 10 years. She found that the Stupid Cancer Organization gave her a way to communicate with others who had cancer who was in her age group. This was important to her, as it helped her cope and had support from her peers who understood the challenges she was experiencing. Discussing survivorship with her was interesting. Even though we were 40 years apart in age, we shared a common bond that we both felt instantly.
The conference started around 10 am. The first speaker, Dr. Julio Barredo who set the stage for the event. He talked about the need for AYAs to have a community where they could network with people their own ages and work through issues and challenges they face as cancer patients.
I was not familiar with the term AYA, so I googled it and learned that it stands for Adolescents and Young Adults with Cancer. I learned that about 70,000 young people (ages 15-39) are diagnosed with cancer each year in the United States—accounting for about 5 percent of cancer diagnoses in the United States. This is about six times the number of cancers diagnosed in children ages 0-14.
Young adults are more likely than either younger children or older adults to be diagnosed with certain cancers, such as Hodgkin lymphoma, testicular cancer, and sarcomas. However, the incidence of specific cancer types varies according to age. Leukemia, lymphoma, testicular cancer, and thyroid cancer are the most common cancers among 15-24-year-olds. Among 25-39-year-olds, breast cancer and melanoma are the most common. Cancer is the leading cause of disease-related death in the AYA population. Among AYAs, only accidents, suicide, and homicide claimed more lives than cancer.
The challenges for oncology teams in helping this population assisting them to:
- Deal with their diagnosis
- Understand their treatment options
- Live with their cancer diagnosis
- Prepare for the future
- Navigate the treatment process
- Move beyond treatment
As I listened, I realized why an organization like Stupid Cancer was needed and the value it could bring to this population. I only worked in pediatrics for a few years. I remembered a nursing colleague of mine saying that pediatrics is a practice that focuses on children of all ages. She also said that children are not ‘little adults’ and that we had to find ways to work with them that were age appropriate.
Stupid Cancer provides a resource for the AYA community and a useful tool for healthcare professionals who work with this age group when they are diagnosed with cancer.
The agenda was full of fun things that the AYA community could relate to. The sessions included the Benefits of Arts in Medicine, Managing Relationships, the Benefits of Massage Therapy, the importance of nutrition. There was also a presentation on coping with long term side effects and a session on Music Therapy. The last session of the day was a moving panel discussion of AYA Survivors and the medical team. To end the day, there was an After Party on the Terrace that all could take part it. It was fun watching the kids talk, laugh and have fun.
It was a great day and reinforced to me the importance of meeting the patient where they are and not thinking that one size fits all. We each have our own personal goals that we are trying to achieve even in the throes of severe illness like cancer.
If you are an adolescent or young adult with cancer or work with this population, check out the Stupid Cancer website as a wealth of information that you can use. If you are a caregiver or a healthcare professional Stupid Cancer has information that to share with your patients.
Have a good week and thanks for reading Nurse Advocate.