Getting any type of cancer diagnosis can be terrifying, but it’s even worse when you don’t really understand what’s happening. On this episode of WE Have Cancer, Lee talks with Carly Flumer about her experiences -- from getting a thyroid cancer diagnosis herself to now advocating for medical professionals to use health literacy concepts to improve patient compliance.
Carly Flumer received a thyroid cancer diagnosis at 27 years old and found the journey confusing, frustrating, and even offensive at times. All it took was one doctor drawing a picture to better explain her condition and it all made sense. Carly now works for the National Cancer Institute and as an independent advocate for improving how doctors inform patients.
Table of contents:
Thyroid cancer diagnosis
At an annual physical, a doctor found a lump in her throat. Though an ultrasound proved the lump wasn’t actually cancer, they did find something else they wanted to get a little closer look at. A biopsy later and Carly had her thyroid cancer diagnosis.
With metastasis, Carly ended up needing further treatment, including a total thyroidectomy.
“The good cancer”
Throughout her journey, Carly heard she had “the good cancer” as a way of helping try to ease fears. But Carly found the term to be offensive and believes it doesn’t make things any less stressful or difficult.
Advocacy through experience
Having found her journey with thyroid cancer to be confusing and difficult. From people downplaying her experiences to doctors failing to explain things properly, Carly shares what she feels is a common problem that can make all the difference for non-compliant patients.
Compliance vs. Non-compliance
Carly breaks down what she feels is non-compliance from a patient perspective and how she believes the doctor plays a big part in a patient’s success. From lapses in medication to getting scans and bloodwork done on time.
Working at the National Cancer Institute
Carly talks about how she came to work at the National Cancer Institute during her journey with thyroid cancer. She discusses how her job helps other patients learn about new and emerging cancer treatments through clinical trials.
Clinical trials for cancer
Through her own experience going through clinical trials, Carly explains what clinical trials offer to patients. She also breaks down how clinical trials can differ -- from trying new treatments to finding specific tumor markers.
Why and when should patients look at clinical trials?
Beyond what clinical trials are at a base level, Lee and Carly talk about why someone might want to participate in a clinical trial and when they should begin looking for one.
Phases of clinical trials
Carly explains the different phases of a clinical trial and what each phase might offer to both patients, doctors, and researchers alike.
Advocating for improving patient education
With the experience of her doctors struggling to really teach her about her cancer or the support systems available, Carly is taking up the charge instead. She talks about how she’s been an advocate for improving patient education by sharing her story with others, and how it’s given her a sense of empowerment along the way.
Twitter chats and advocacy
Carly found Twitter chats during grad school and has begun using the social media format as a part of her advocacy. She’s helped not only other patients but other advocates, doctors, nurses, and even executives of healthcare companies.