“I was in this really unique space of being 19. So I’m over the 18 cut-off of peds but diagnosed with Ewing sarcoma, but I was an adult. I was able and supposed to be making my own decisions but treated in a pediatric setting. And not everybody in that setting is expecting to talk to someone who is educated and understands what's going on,” Alec Kupelian, a cancer survivor and operations and program development specialist at Teen Cancer America in Los Angeles, CA, told Jaime Weimer, MSN, RN, AGCNS-BS, AOCNS®, manager of oncology nursing practice at ONS, during a conversation about advocacy for adolescents and young adults (AYAs) with cancer and his own cancer journey.

Music Credit: “Fireflies and Stardust” by Kevin MacLeod

Licensed under Creative Commons by Attribution 3.0 

The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of NCPD by the American Nurses Credentialing Center’s Commission on Accreditation.

Learning outcome: Learners will report an increase in knowledge related to the experience of AYA patients with cancer.

Episode Notes 

• The NCPD activity for this episode has expired, but you can still earn NCPD through many other ONS Podcast episodes. Find a full list of opportunities.
• Oncology Nursing Podcast episodes:
  • Episode 307: AYAs With Cancer: Financial Toxicity
  • Episode 300: AYAs With Cancer: End-of-Life Care Planning
  • Episode 9: How to Support Adolescent and Young Adult Patients With Cancer
• ONS Voice articles:
  • AYA Cancer Survivorship: Younger Survivors Face Different Challenges and Prefer More Casual Support Programs
  • Nursing Considerations for Adolescent and Young Adult Cancer Survivorship Care
  • Have Meaningful Conversations With Pediatric, Adolescent, and Young Adult Patients and Their Families
  • AYA Champions Clinic Fills Gaps in Care and Addresses Unmet Needs
• ONS book: Oncology Nurse Navigation: Delivering Patient-Centered Care Across the Continuum (second edition)
• ONS course: Advocacy 101: Making a Difference
• Clinical Journal of Oncology Nursing articles:
  • Adolescent and Young Adult Cancer Survivors: Development of an Interprofessional Survivorship Clinic
  • Two Case Reports on Financial Toxicity and Healthcare Transitions in Adolescent and Young Adult Cancer Survivors
  • Sexual Health: A Nursing Approach to Supporting the Needs of Young Adult Cancer Survivors
• Oncology Nursing Forum articles:
  • Integrative Literature Review on Psychological Distress and Coping Strategies Among Survivors of Adolescent Cancer
  • Physical Activity in Young Adult Cancer Survivors: A Scoping Review
• ONS Huddle Cards:
  • Coping
  • Fertility Preservation
  • Sexuality
• ONS Learning Libraries:
  • Inclusive Care
  • Survivorship
• Teen Cancer America
  • The Monthly Drip
  • AYA Oncology Healthcare Professionals Program Advisory Group
• Stupid Cancer
• Adolescent and Young Adult Cancer Congress
• 988 Suicide and Crisis Lifeline
• Supportive Care in Cancer article: An Actionable Needs Assessment for Adolescents and Young Adults With Cancer: The AYA Needs Assessment and Service Bridge (NA-SB)
• To discuss the information in this episode with other oncology nurses, visit the ONS Communities.

To find resources for creating an ONS Podcast Club in your chapter or nursing community, visit the ONS Podcast Library.

To provide feedback or otherwise reach ONS about the podcast, email [email protected].

Highlights From This Episode

“I joke a lot of the times that cancer was actually one of the best years of my life, and that’s not because it was good necessarily. It’s because that next year, after cancer, was probably the worst year of my life, and that drop-off into that early survivorship was a really brutal experience for me, and from talking to other cancer survivors, for them as well.” TS 3:25

“I talk to a lot of clinicians and a lot of young adult cancer survivors, and the more that I hear other people’s stories, the more clear it is to me that you never know who a patient is going to disclose information to. A lot of those symptoms or side effects or secondary issues that come about from cancer, which complicate every part of your life, it may not come to the [physician]. I was most comfortable with my nurses because I spent time with them.” TS 9:15

“You put your nose to the grindstone, and there’s a good guy, which is you, and a bad guy, which is cancer, and you just get through it. It’s very clear. And you have so much attention and dedicated support. And then when treatment’s over, everybody pats your back, dusts their shoulders, and says, ‘Congrats, go get out there.’ And all that structure goes away, and you are left floundering, trying to reconnect to what you were before and what life looked like. And it’s not always the same. … Most AYA patients would say treatment was the easy part. And those first two years after treatment were the hardest part of cancer—that reintegrating into life, that trying to contend with what just happened when you’re no longer in survival mode.” TS 26:14

“An AYA patient may have another 50 years of life after that. How does survivorship work for that? What is sexual health? Fertility? What is palliative care? … What does end-of-life care look for a patient who hasn’t gotten a chance to live their whole life? It’s really important stuff, and that is too much to ask any one person to figure out. And so Teen Cancer America wants to provide some of that framework.” TS 31:03

“Allowing nurses to say that, ‘There is going to be stuff that I don’t know, and that isn’t a failing on my part. Saying I don’t know something helps my patient have more confidence in me.’ I hear all the time clinicians are like, ‘I don’t bring up sexual health because I don’t know what to say, and I don’t want them to lose confidence in me.’ They don’t. They don’t lose confidence in you because you don’t know something. You’re a human, also. They lose confidence in you when you stop caring about them.” TS 43:44