A free, easy-to-use app, Carcinoid NETs Health Storylines, is empowering patients to be proactive in tracking and staying on top of the many aspects of life with neuroendocrine tumors (NETs) and carcinoid syndrome. Says NETs patient and Self Care Ambassador Beth Leonard, the app “allows me to feel I have some semblance of control in a disease that’s not in my control.”
The app is a visually welcoming and intuitive one-stop place to store a patient’s full range of information and resources, offering clearly identifiable tool boxes into which the patient logs everything from nutrition information and symptoms to medication reminders and appointment trackers. Patients can also access supportive resources such as Zebra Tales – stories of others with NETs – and healing music (including music written and performed by NET patients).
As patients load their information each day, the app creates a summary of their health called “My Storylines.” As the data builds, the app can “talk back” to patients, providing reminders, for example, about when to take medications, which may help improve their ability to stick to a treatment plan or a routine. Over time, the way the app aggregates all the information into My Storylines helps patients see patterns and assess overall well-being.
An IT executive, Beth said, “I’m a data-driven person and I like that with the app I no longer have to guesstimate my answers to doctors’ questions because I’ve been collecting my data all along. It’s one thing to have the data in your head. It’s a lot easier to have it on the app. With the app, I can give my doctors more accurate information about my body.”
Her favorite features: “The Daily Mood, which helps me be cognizant and allows me to reflect on my mood and anxiety levels. The Stool Diary tool is also very easy to use. I use the journal. I use the Health Concerns tool to jot down questions I want to ask my doctors. And I use the routine builder – it gives me my water intake reminders.”
As a Self Care Ambassador, working with the Carcinoid Cancer Foundation and Self Care Catalysts, the patient intelligence company that developed the platform for the app, Beth encourages other patients on their journeys. “I want to make a difference and have a positive impact on people.” And indeed, she has. “One woman told me, ‘You’re the first person that gets me.’ She told me what she was experiencing and I was able to say these are the questions to ask your doctor. These are the tests you need.” One doctor told me, ” ‘You know more than I do.’ He said I could be a professor at this point and teach other doctors.”
Education, both of patients and health professionals, remains a barrier to effectively living with cancer and Beth sees the app as a tool that can help. “I encounter many people who don’t have information about their cancers. Many patients are older and from a generation that believes that what the doctor says is the law. Or they are told misinformation by doctors who are not familiar with NETs. I had a doctor accuse me of having psychological problems. Don’t let a doctor call you crazy; know your own body.”
“This cancer is often misdiagnosed,” says Beth. Doctors in training are taught a medical take on Occam’s razor – “When you hear hoof beats, think horses, not zebras.” In other words, think of common diseases when presented with common symptoms. “Occam’s Razor doesn’t apply to everyone,” says Beth. “Sometimes you’re the zebra.”
Beth’s message: “Take the time to use the app even if it’s just to log in your mood that day.” The data can put patients in a stronger position to make their case to doctors. “You have to be your own advocate,” Beth emphasizes. The app can also help impose a little order in the universe. “You’re not alone,” says Beth. “You may feel alone, like nobody is listening, but you are not alone. Use the app because it can help you gain perspective and allow you to live your day-to-day life as normally as possible.”
Access the on-line app here: https://healthstorylines.com/blog/?page_id=476. The mobile app is available through the Apple App Store and Google Play.
Read Beth Leonard’s story on the Carcinoid Cancer Foundation’s website at https://www.carcinoid.org/beth-leonard-living-neuroendocrine-cancer/. Visit her Facebook page, Living with Neuroendocrine Cancer, at https://www.facebook.com/pg/LIVEwithNETS.