 has become an advocate for other cancer patients, working closely with the American Society of Clinical Oncology, the Colon Cancer Alliance, Gilda’s Club, the Lance Armstrong Foundation, and the Lurie Cancer Center. We asked Katarina about sharing her experience as an “exception to the rule” to educate physicians-in-training, and advice she has for people facing a cancer diagnosis.
You were diagnosed in your mid-thirties, well below the age range for which doctors recommend regular colon-cancer screenings. How does this aspect of your experience influence your advocacy?
Despite having had all of the symptoms of colon cancer and having pursued medical intervention for quite some time, even I was shocked at my diagnosis, given my age and lifestyle. By virtue of my age, I became an advocate every time I told someone my story.
Currently, I am a member of the Lurie Patient Advisory Board, in part because of my commitment to Northwestern for the quality of care they’ve given me, but also because it is important to have a voice for younger people on the panel. [Younger people] can give a different perspective to the issues that all cancer patients face.
You’ve spoken to Northwestern Medicine physicians-in-training through the Lurie Cancer Center as well. What’s your key message for them?
I want to instill the importance of the exception to the rule. Colon cancer is typically associated with the aging population. When I speak to the residents, they can see my face – I’m a young person. Throughout their careers they’ll get patients who don’t fit the bill, and if they can diagnose the one young person with cancer, they’ve more than done their job. Because it is not just one person they’ve affected – it is that individual, their whole family, and their entire community.
If a physician had been willing to imagine early on that I might have colon cancer despite the fact that I had no risk factors, I never would have been a cancer patient. I would have been treated for pre-cancerous polyps. Unfortunately, that is the shame of it all for most of us under the age of fifty when we’re finally diagnosed.
What advice do you have for patients facing a cancer diagnosis?
First, you need to compartmentalize your journey—your own journey, your family’s, and your various communities’. These all have their own compartments—emotional, physical, psycho-social, medical, insurance, financial, logistics and even the stigma of having cancer. You need to take this all in and then break it down.
Of course there is always the element of sorrow and self-pity. Sure, you can feel sorry for yourself – it is even ok to never stop feeling sorry for yourself. But you need to do so in a compartmentalized space, and then get back to the business of staying on top of your health and living your life. Live each moment with gratitude, grace and passion. Allow yourself to feel the power of life and live in the moment.
You also need to own your own care – be your own account manager. Be proactive – understand your disease. Know what your doctor expects from you, and what you expect from your doctor. It’s critical to choose a doctor who is hearing you. My doctors and nurses made me feel like they really cared about me—and what was important to me—when they were caring for me. It’s important to find a place to give you that.
Finally, I can’t say enough about the community that has embraced me as a cancer survivor. They say it takes a community to raise a child—it also takes a community to get a survivor through the journey. And I haven’t found a more caring community than this one I’ve been forced to belong to because of cancer.
For example, places like Gilda’s Club (a community for cancer survivors, family and friends) can become a home, and it definitely became ours. There is strength in knowing others who are feeling what you’re feeling. You can connect with others and validate frustration, or talk about what’s right about your doctor or your care – it’s empowering. You can turn to these individuals when you feel like the burden you have placed on your family just fro