Being told you have cancer is a devastating moment in your life, and my first reaction was probably typical of most patients‒fear. Fear of the unknown, fear of being isolated or in pain, fear of long stays in the hospital, and fear of leaving my family behind, among others. However, fear also triggered a desire to understand more about my disease and my options, and initiate treatment as quickly as possible. I am a physician by profession, but experiencing a cancer diagnosis is difficult for anyone.
When I was first diagnosed with Non-Hodgkin lymphoma ten years ago, I received radiation therapy. The primary side effect was fatigue, but I was able to work throughout treatment. I would walk about 20 minutes from my office to treatment, which was a nice way to compartmentalize my day, squeeze in some exercise and give me mental space.
I relapsed this past spring and had to receive several months of chemotherapy. I had a lot of the common chemo side effects, including hair loss, fatigue, nausea and a side effect that may increase infection risk, known as neutropenia. Neutropenia is when the body has very low levels of certain white blood cells called neutrophils that make it harder to fight off infections. None of these side effects were incapacitating, and I was able to continue most activities I was doing before treatment. I paid special attention to maintaining a healthy and balanced diet and achieving at least 30 minutes of exercise every day. And I’m thankful for my family and friends; they were critical to supporting my mental health, progress and needs.
One of my main concerns as a cancer patient was the risk of infection during treatment. Over the course of my medical career, I cared for many cancer patients who had fever and infection due to neutropenia. Patients can die from infection and sepsis. As a result of this experience, I was very concerned about getting an infection.
To prevent infection during my treatment, I either avoided certain activities or took precautions when doing anything that could expose me to bacteria and fungus. For example, I limited my exposure to people who may be ill. So, my family did the shopping and we planned for activities at home instead of going out, like movie nights. And we all got flu shots when the vaccine became available. My family also regularly cleaned high-touch surfaces like doorknobs, TV remotes, phones, and countertops with disinfecting wipes. And we all washed our hands or used alcohol-based gels constantly!
To help cancer patients prevent infection, the CDC Foundation recently launched TINA, the first educational tool using virtual human technology to improve patient-provider conversations about neutropenia. This innovative new resource is part of the Preventing Infections in Cancer Patients (PICP) program, which has been led by the Centers for Disease Control and Prevention (CDC) and the CDC Foundation since 2009, with support from Amgen.
Available as a free mobile app and on PreventCancerInfections.org, TINA features two separate conversations in which providers and patients interact with and learn from fully articulated and emotionally responsive virtual humans:
TINA for Providers offers providers a safe and realistic training environment to practice meaningful and appropriate conversations with cancer patients about neutropenia;
TINA for Patients introduces patients to a virtual provider, TINA, who will answer their questions about infection risk and the steps they can take to protect themselves.
The TINA tool would have been very helpful during my treatment. Although a medical team’s goal is to explain issues thoroughly and answer all questions, patients can forget details or can generate new questions after a visit. The easy next step is for patients to seek out answers online, but this can be very challenging as there is a significant amount of inaccurate information and outdated material on the web. Cancer patients and their families need accurate, understandable advice from a reputable source.
This is where TINA can be a great help, as it provides a thorough, easy to access and reputable resource. Also, TINA has an interactive logic that answers my questions while also giving me information on a host of topics. Moreover, I like the interface because it feels like I am working with a personal and caring medical assistant—one that can also offer links to the science and other reference material when I want to learn more.
I hope the TINA tool can be a useful resource for anyone facing a cancer diagnosis.