Recently, our bloggers told us where they went for information following a cancer diagnosis. Now, two of our cancer doctors share their thoughts on the topic. Their biggest piece of advice? Talk to your cancer team.
June 24, 2015
Author: Dr. Clark Gamblin
Question: Where do you get your cancer information?
My patients often begin a conversation with, “We looked on the Internet prior to coming to see you, and we know how much trouble we are in.” I also clearly remember when patients began coming to see me years ago in Pittsburgh based on a “Google” search! This was during a time when we had no idea the impact Google would make on all of us.
I have always been amazed at the trust the public puts in the Internet. I typically direct patients with a new diagnosis to literature and websites our group either helps write or those we have extensively vetted. The Internet is filled with so much medical information about cancer, but many times it is inaccurate, dated or misguided.
Another source of information is neighbors and friends. Patients in my clinic have often contacted people they know that have been faced with cancer. These individuals help them form their opinions and often help craft a series of thoughtful questions regarding next steps. Some information may not apply to all forms of cancer, as there are distinct differences in chemotherapy or the specific recovery period. These personal connections may also help patients reflect and understand where to go for trustworthy information. It is not uncommon for a patient to comment that they have come to see me because of a former patient that they know well.
Several organizations provide incredible support and information to a newly diagnosed patient. For example, After Breast Cancer Diagnosis (ABCD), which was founded here in Milwaukee by broadcaster Melodie Wilson, provides paired mentorship for women across the United States diagnosed with breast cancer. Other organizations such as the American Cancer Society, the American Liver Foundation and PMP Pals (for patients with Pseudomyxoma peritonei) provide information and also opportunities to become involved nationally.
I am also surprised during an office visit that patients are hesitant to ask physicians all their questions. Sometimes they start off by saying, “I am sorry, but I have a few questions …” I cannot imagine a more appropriate person to ask questions to than your personal physician. This relationship is the most valuable resource to gain information. I even think patients should ask the doctor, “What else should I ask you?” Physicians are there to help patients navigate their course and teach them the medical terms that often feel like a foreign language.
The quality of the information obtained at diagnosis is vital to the patient’s mental health. It is difficult for patients to realize that the information they may have read earlier was not the “whole story,” and thus I would stress that Internet searches will sometimes help but are not always factual, and thus one should approach them cautiously.
Finally, I would encourage you to think about what you have learned about cancer if it has touched your life, and offer it to others with encouragement and positivity. This blog is such an opportunity – one allowing you to help someone, perhaps someone you may never even meet.
