Tips for Cancer Patients: Dealing with Information Overload
A cancer diagnosis often comes with a huge amount of information for patients to review and remember. Between appointments, meetings with various doctors and clinicians, and absorbing information about treatment and nutrition, it can be difficult to keep track of everything. There is a lot to focus on while you are dealing with an experience that may have turned your life upside down.
“From the beginning, patients are informed about their diagnosis, treatment, and services,” says Eileen Smith, a mind-body therapist at our hospital outside Atlanta. “Ultimately, I think patients are likely to lose some information.”
Many patients describe their initial meetings as vague, with doctors bombarding them with details while all they remember hearing is the word cancer. Studies show that many cancer patients do not fully understand their disease, treatment options, or prognosis. In some cases, patients are too tired to absorb information. That’s because cancer is complicated. The whole experience can feel like you have to learn a new language in a matter of days.
Newly diagnosed patients have a lot to learn and a lot of information to decipher. The Internet can be a great resource, but it is difficult to sort through the vast amount of information about cancer treatment, including disguised misinformation in the form of facts. Well-meaning loved ones can try to help by sharing studies, ads, and other statements that are full of inaccurate and misleading statements. Trying to separate fact from fiction can take a long time, if you let it.
Add to those feelings of anxiety and confusion, and it can be hard to absorb everything. But amid the haze of a cancer diagnosis, you can take important steps to make it easier to tackle this difficult time, especially if you’re proactive in your care. Learn about your disease and develop a strong support system.
“It’s important to have a caregiver with you to act as your proactive agent,” Smith says. “This person should not only listen to what their medical team says, they should record it. It should help your doctor keep a record of all the details about your care when writing the information. This will help both of you to understand your treatment plan.”
Be prepared for questions
Having a practical and understanding caregiver is an important first step. Patients who take an active role in their own care may also find that it helps them regain control during a period of uncertainty.
“You’re allowed to ask questions,” Smith says. “As a patient, you are not only there to provide information, you are also there to get information. If you don’t understand what the doctor is saying, ask questions. When patients ask me they ask, I get excited, because I see them as being proactive and encourage them to do so. Some patients may hesitate to Asking questions, for fear of offending someone they admire as an authority figure, but being proactive is very important to their health. Patients need to understand that they are the reason doctors and doctors are there.”
It may be helpful to prepare a list of questions for your doctor before your appointment. Call your medical team and tell them how much information you want. Some patients like to have a lot of information about their disease. Others prefer hearing only what is necessary to make informed treatment decisions.
Smith says it’s okay to tell your doctors if you’re feeling overwhelmed, too. “Tell them, let’s slow down for a minute and get your thoughts in order,” he advises. “During some doctor visits, patients can hear factual information, but they have an emotional reaction. That emotional reaction is fear and anxiety and what if… Tell your medical team if you are overburdened with information and ask for clarification.”