Welcome to another special edition Live from AACR 2025 Chicago episode of Candidly with Carolyn! This time with Katie Coleman, software engineer, author of Too Young For Cancer and Rare Cancer Patient Advocate. Facing a cancer diagnosis especially as a young adult can be very lonely and isolating as it is. What happens when we are diagnosed with 1 of only 10 known stage 4 cases in the entire world - where information and resources are so limited?

Carolyn and Katie find a nook at the conference convention centre to chit chat, try to ignore hearing nearby event staff getting sassy with one another, discuss how their cancer experiences and facing mortality might have inspired how they move through life today, advocacy post-the Apple Cider Vinegar Netflix series, building systems that empower patients and clinicians alike, and of course - share laughs along the way. Come hang out with us. Enjoy!

Learn more about Katie Coleman's advocacy works at https://www.katiekickscancer.com/ and Contexlia at https://www.contexlia.com/

(01:08)-Welcome to this conversation! Come hang out with us.

(04:04)-Advocates tend to have this fierceness - an observation from Dr. Emil Lou

(07:00)-When advocate fierceness is nurtured by community

(09:13)-What inspired Katie to build Contexlia?

(11:50)-Advocates have a vested interest

(12:20)-When Katie and others showed up for another patient

(14:30)-Relentlessly moving the ball forward as advocates

(15:26)-Advocates with lived cancer experiences make great builders of things

(18:11)-You have stage 4, is there....a succession plan?

(21:50)-The biggest post-cancer challenge for Katie

(23:17)-The Apple Cider Vinegar Netflix series

(24:50)-What can sometimes feel icky

(27:17)-We're not - that - special.

(27:42)-The approach to data information management for Contexlia

(29:40)-The power of context and sentiment

(31:35)-Creating solutions that stick

(33:00)-A case for demonstrating what advocates know

(33:40)-Challenges with keeping track of medical records

(34:49)-"The Medical Assistant went from stressed to so excited"

(37:40)-"I got dismissed a lot in the medical system"

(38:50)-We have front and centre seats to breaks in the system

(40:30)-When we can see the passion re-emerge from clinicians

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The views and opinions expressed are solely those of the podcast author, or individuals participating in the podcast at the moment of recording. We are human and are constantly learning and evolving. They do not represent the opinions of any podcast partners. What is shared in these conversations is for consideration only. This podcast must not be in place of official professional research, medical advice, mental health advice, mental health counselling or therapy, or as imparting any health care recommendations at all. While those on the podcast might have lived and professional experiences with cancer, it is important to seek support from health professionals who can take the time to assess and analyze your specific circumstance.