Episode 28: Self-advocacy in action - Inspiration from TikTok influencer KatieKicksCancer, rare cancer patient and advocate Katie Coleman
The power of social media and storytelling for rare cancer patients
The value of second opinions and shared decision making with your doctors
The importance of asking questions and self advocacy
About our guest
Katie Coleman is a patient advocate who was diagnosed with a rare stage IV kidney cancer in Dec 2020, at the age of 29. She has shared her diagnosis publicly on social media to spread awareness and to advocate for others with kidney cancer and rare diseases. Since being diagnosed, she has also founded a non-profit, started a podcast and is currently writing a memoir. You can read more about Katie on her website at www.katiekickscancer.com.
Watch the video of our episode on YouTube
On Katie's initial diagnosis and sharing her story on social media.
Right when I was first diagnosed I started sharing on Instagram. I started sharing every day because I was diagnosed at 29 with a rare Stage IV kidney cancer. At the time I knew nothing about cancer, healthcare or really anything medically related. And so I was terrified. All I had to go on was the things I’d seen in books, TV shows and movies about what Stage IV looks like, so I was petrified. I kept hearing from other people that you can live with cancer, and there’s so much life to live. So I started sharing to document the process. And if anybody else came and found themselves in my shoes one day and was also scared, they could look at my story and see what to expect.
On shared decision making between patient and doctor.
For me as a patient, I had to decide which route I wanted to take. Do I want to continue with this treatment that is actually working for me? Do I want to stick with the standard of care? Or do I want to take a risk on this surgery, which has the intent to cure, so a much bigger reward, but obviously has a much higher risk because there was a whole lot of things that could go wrong? I think that’s where rapport with your physician really comes into play, being able to sit across from each other and have those conversations, to let them know: these are my goals, and these are the options. Where should we fall in between there? And making that decision with them versus having to do it alone or having them make the decision for you.
Katie's advice for fellow cancer patients.
My biggest piece of advice for other patients is to ask questions and advocate for yourself. For more common types of cancers, there are more options and guidelines to follow, but especially the further down the treatment path you get or the more rare type of cancer you have, the more your plan becomes a discussion with your physician. So learning as much about your disease as you can, and then advocating and asking questions is important. You have to ask questions to learn.
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