How to Talk to Your Doctor About What You Find on the Internet

You can get the most out of your doctor's appointment if you plan ahead.

When Lani Horn, 40, of Nashville, Tennessee, was deciding whether to have a single or double mastectomy, an online article in the Los Angeles Times ultimately helped her make that difficult decision.

The clinical oncologists she consulted recommended a double mastectomy, while the surgeons she consulted recommended the removal of one breast.

"It was agonizing," says Horn, who chronicles her cancer experience on the blog Chemobabe. "When I was sorting this out I saw a study that said that for women like me with hormone-negative breast cancer a double mastectomy offered a 4.8 percentage point improvement in overall survival. That may sound small, but I wanted every possible advantage.”

For cancer patients, the question isn't whether to go online for health information, but how to discuss information they’ve found with their oncologist. According to data from the Pew Internet Project and the California Healthcare Foundation, some 59 percent of all U.S. adults look for health information online, be it about a particular disease or health problem.

Making the most of your doctor’s expertise takes thought, organization and planning, health professionals say. Studies show that patients engaged in the medical decision-making process had a better idea of treatment options and perception of risk factors when their physicians offered decision aids. Patient-centered care, a term coined in l988, actually enlists the engagement of patients and their families in shared decision-making. And with that engagement comes the need for information and context from a professional who knows your diagnosis and medical history.

Be honest with yourself. Not everyone wants to become an expert in genomic health. However, it’s critical that you understand your diagnosis, recommended treatments and potential side effects if you want to be engaged in your medical treatment. At the very least, this requires an understanding of medical terminology and how to make the best choice given your preferences, lifestyle and current health.

The goal for anyone with a cancer diagnosis, says author, physician and survivor Wendy Harpham, MD, is to learn enough to get good care. “What’s essential about sharing any information with your doctor, whether it comes from PubMed [a database of medical abstracts and articles], a cereal box, a neighbor or the hospital library, is discovering how that information applies to you and your particular medical situation. Your doctor is the best person to interpret information in the context of your particular illness.”

When she was diagnosed recurrent non-Hodgkin lymphoma, Harpham used her experience and knowledge of internal medicine to discuss studies and share her treatment preferences with her oncologist. But as a patient, she says, she ultimately trusted and followed her physician’s final recommendations.

Patient advocate and navigator Elisabeth Schuler Russell, founder of Patient Navigator LLC, a private company that provides research and navigation services, suggests that those first learning about cancer go straight to credible sources of cancer information first instead of running a search for “colon cancer” or “breast cancer” on Google.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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