Steven Katz, an internist at the University Michigan, researches how medical decisions are made. Over the last dozen years, he has surveyed 10,000 patients and their doctors to better understand how they discuss a diagnosis and decide to proceed.
“Women have taught me a lot,” says Katz. Sorting out various options can be “very confusing and very tough.” He has distilled what he has learned and offers the following suggestions for women suddenly confronted with breast cancer. More than a quarter-million women in the United States are diagnosed with the disease every year.
Treatment decision-making is not a medical emergency.
Decision-making is complicated, all new, and you will be engaging different specialists you are meeting for the first time. Don’t make final decisions in the first visit with a new doctor. Go back at least one more time. Quick gut decisions are often not good decisions, especially when there is a lot on the line. They can put you on a track where you may not give sufficient thought to all the options that might be good for you. They can also motivate you to desire more extensive treatment than may be necessary.
Engage your doctors!
Patients need to realize that their understandably strong reactions to the threat of cancer can hinder their engagement with their doctors. Help doctors help you by engaging them to help you navigate the decisions. Five basic questions to ask are: What are my options? What are the benefits and risk of these options? How likely are the benefits and risks of each option? What do you recommend and why? What are the next steps?
Bring someone with you to your medical appointments.
It’s a great idea to bring someone with you to your appointments (whether a spouse, mother, sister, daughter, friend or church member). It’s impossible to think of all the questions you need to ask when you face the threat of cancer. It’s extremely helpful to have someone with you suggesting questions and taking notes.
Have your doctor summarize his or her recommendations.
Ask for this during each visit and record the discussion on your cellphone so you can replay it later if a detail seems confusing.
Expect close clinical follow-up and coordination.
The decision and treatment processes are complicated, and even doctors who become patients can be bewildered by the system. It’s critically important that patients are confident about next steps on planning and that the practice delivers with regard to follow-up.
Get a second opinion.
If you are uncertain about any aspects of your care, get a second opinion. Your doctors should encourage you to do so and even arrange it. Second opinions can confirm for you that you are on the right track.
Learn the best ways to manage treatment side effects.
Most women first diagnosed with breast cancer feel well, and then we doctors make them sick to make them better. That is hard. The inconvenience and side effects of chemotherapy, surgery and radiation exact a toll on patients in work and family life. Most women are working at the time of diagnosis. Most miss work during treatment, and many are at risk for long-term job loss after treatment. Talk to your doctors about convenience of scheduling, engage employers if you can about a potentially arduous treatment plan, find a support group that can help you weather this period in your life (doctors and practice staff can help with that). Your family needs to know about this and support you.