In this captivating episode of "The Patient From Hell" podcast, Dr. Sydney Barned shares her unique perspective as both a practicing physician and a seven-and-a-half-year survivor of stage 4 non-small cell lung cancer (NSCLC). Dr. Barned offers invaluable insights into the challenges of navigating a cancer diagnosis, the importance of patient advocacy, and the gaps in understanding between doctors and patients. Her story highlights the need for better communication, education, and support in cancer care, while also shedding light on the personal struggles and triumphs of living with cancer. We also delve into the Patient-Centered Outcomes Research Institute (PCORI) funding study comparing the impact of using different types of material to understand palliative chemo for advanced cancer patients.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Debra Schragg, MD, MPH. Check out our Podcast Club with Bright Spot Network here.
About our guest
Dr. Sydney Barned, is a dedicated physician and lung cancer advocate committed to advancing research, raising awareness, and supporting policy initiatives in the field of oncology. Diagnosed with stage IV lung cancer at the age of 33, she brings a unique perspective to lung cancer advocacy, combining her firsthand experience with her medical expertise to drive positive change in the fight against cancer. With a background in Internal Medicine and a focus on hospital medicine as an internal medicine hospitalist, Dr. Barned is actively involved in community outreach and educational initiatives aimed at empowering patients and healthcare professionals alike.
Bellinda also has experience in industry and academia and has published over 70 peer-reviewed papers. She received her Bachelor of Social Science and Master of Science in applied statistics from Swinburne University of Technology in Melbourne, Australia, and her PhD in psychometrics from the Academic Medical Center in Amsterdam, Netherlands.
Key Moments
3 minutes:
"So I had to do a lot of compartmentalization and it was some a lot of the times it was tough especially when I got patients who were younger and you know they reminded me of myself.... I've diagnosed patients with cancer, treated the side effects of cancer, you know, had to have those difficult conversations where I'm like,’ look, treatment is not working. We need to switch to more comfort based measures.’ I've had to bring in hospice and, you know, I've even had to pronounce time of death. So I've seen the entire spectrum and I mean, one of the things that it definitely does make me, it makes me very grateful for the life that I have."
30 minutes:
"Most patients when you're going through a diagnosis of cancer, you are not necessarily understanding everything because the emotions that are tied to hearing you have cancer. So just hearing that in itself is a blow, much less hearing you have advanced disease. That's going to be another blow as well. And a lot of the times when doctors are talking to you after hearing those two statements, it kind of sounds like, again, I'm going to be aging myself, but you remember Charlie Brown? When the adult was talking... you didn't hear anything. And that's kind of what it's like when a patient is hearing all of this information from their doctors."
46 minutes:
"Best piece of advice is it's okay to cry, it's okay to let those emotions out, but it's better to not sit in that and wallow. Try to do as much as you can to educate yourself about it so that you can be an informed patient, so that you can advocate for yourself. You can do that by going online. You can do that by joining support groups that have other patients by asking them questions.”
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