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.
“Good care is a shared responsibility,” she continues. “No doctor wants to be caught off-guard. To make it more likely you get all your questions answered, or your research discussed, go ahead and fax or email the material ahead of time. While it is certainly important to ask about something you’ve read, do make sure to listen to what your physician has to say as well.”
• Make the most of your appointment and prepare ahead of time.
Prioritize your questions, so you ask the most pressing issues first.
• Understand the difference between anecdote and evidence.
Tumor biology is complex. Your neighbor may have had the same type of cancer as yours yet be entirely different. It is best to examine the most informative studies (known as “best evidence”) for your specific situation.
• Take advantage of all the medical experts at your disposal and decision aids.
Although they may not be privy to your medical information, physicians’ assistants, nurses, medical librarian and medical workers can provide excellent education materials and resources and help answer general questions.
• Where available, utilize secure patient portals for more routine correspondence.
At the H. Lee Moffitt Cancer Center & Research Institute, some 22,000 patients currently use the center’s popular MyMoffitt web-based portal for accessing forms, viewing their electronic medical record, managing appointments or sending a secure message to their medical team.
• Discern the nature of your question.
When patients are concerned about the future, they sometimes bring information that is irrelevant to the current situation. “I try to get patients to focus on what we know right now, acknowledging that there are many unknowns. We have to go one step at a time,” says Deanna Attai, MD, a breast surgeon in Burbank, Calif. “I’m constantly pulling people back to the present reality, though I appreciate that treatment is frightening and scary.”
• Find a physician who you respect and can work with.
A cancer diagnosis is a life-changing event and the relationship with an oncologist extends for many years. Find a doctor you’re comfortable with and ask about how to best handle new information you find during your first visit. Good doctors encourage dialogue. And never forget the obvious and most basic question: “How are we going to work together to get rid of my cancer and live a healthy life?” That’s a perfect place to start.