Before I was diagnosed with inflammatory breast cancer, I was a rather passive patient. I went to the doctor, explained a problem, and then did whatever the doctor recommended. I did ask a lot of questions, but it never occurred to me that I might have a choice about treatments. Fortunately I was mostly healthy for the first fifty years of my life, so there weren’t many occasions when I needed to make a medical decision.
Then in April of 1998, I entered the world of breast cancer. Should I ask for a second opinion? Should I enter a clinical trial? Should I opt for a more invasive treatment at a hospital three hours away or should I stay with what my local hospital could provide?
Finding the right balance in decision making
As I talk with others in the breast cancer community, I hear stories from people who feel overwhelmed by choices their physicians ask them to make. Often they feel that the doctor has turned a complicated medical decision over to them without giving them enough information. Here at HealthCentral, we frequently hear from women whose doctors have asked them to decide between a lumpectomy or mastectomy, between surgery alone or chemotherapy. They feel unprepared to make a decision when even their trained doctor doesn’t know what is best.
I also hear from many women who are angry that their doctors are not including them in choices. Sometimes they have asked their doctor for a specific drug or treatment and been told no. This seems to happen often to women who would like both breasts removed instead of a single mastectomy. These women think they have done enough reading and research to know what is best for their own body and don’t accept their doctor’s recommendation.
‘Patient involvement’ is a new buzzworthy term in the medical community. Doctors realize that the old paradigm of “doctor knows best” has shifted. Understanding the best ways to involve patients is still a work in progress. One study led by Dr. Jasvinder Singh looked at cancer patients in six different trials to find what type of doctor-patient relationship they preferred and whether their actual experience matched their preference. About half of the patients wanted a “collaborative relationship with physicians in treatment decision making.” The other half were equally divided between a desire for active and passive roles. More than half had the relationship they wanted, but a large minority of forty per cent did not.
Four ways to build the relationship you want with your doctor.
What does this mean to you? How can you build the kind of relationship you want with your doctor?
1. Find the right doctor
I have learned when I am looking for a doctor to state up front what I want. I let the person scheduling the appointment know that I would like a doctor who is good at answering my questions and who will respect my ability to understand medical information. Since I began doing that, I usually get a physician who fits my preferred style of communication. Of course, that isn’t always possible. In a small community there might be only one choice. Sometimes a specialist with experience in your particular problem is better than someone with a comforting bedside manner.
2. Tell the doctor what you expect
Medical professionals today are being trained to offer more information and choices to patients. But not everyone wants that information. Some patients prefer a passive role. The doctor can’t read your mind. The first time you meet a new doctor, it can be helpful to let him or her know a bit about your background in making medical decisions and how involved you want to be.
3. Know what you don’t know
Unless you are an oncologist or breast surgeon yourself, your doctor knows more about your medical condition and the treatments available than you do. The internet is full of misinformation, and even information from credible sources may not be applicable to your situation. Often when I ask my physician about a new treatment I have read about in the news, she is able to explain why that treatment is not right for me. It’s good to ask while respecting your doctor’s expertise.
4. Be confident in your ability to learn complicated medical information
Even if you don’t want your oncologist or surgeon to turn medical decisions over to you, it is important that you learn as much as you can about your breast cancer. There are many different types of breast cancer, and you will find it puzzling that your friend received a different treatment if you don’t understand that hers is a different form. If you experience unpleasant side effects from a hormonal treatment, you will be more likely to stick with it if you know how it works and the extent to which it can reduce your chance for recurrence. Conversely, if you had a type of breast cancer with a low chance of recurrence, you might make an informed decision to discontinue the drug.
If you don’t have a background that helps you understand the doctor’s big words, ask the nurse for informational brochures in simple language. I found that when I was in the doctor’s office, I often couldn’t absorb information. The handouts from the nurse helped me learn the information in my own way later. Don’t be afraid to ask for an explanation of something you don’t understand, especially information about how to take a medicine or when to call if you have side effects later.
Sometimes the patient knows best!
There really are medical decisions that you are qualified to make. You know your body best, so you are the person best qualified to decide whether you want reconstruction. Of course, you will need information from the doctor about the risks and benefits of that surgery for you. Often in breast cancer treatment there are options, each of which comes with its own set of advantages and disadvantages. You are the person who has to live with those decisions, so when those options arise, use your doctors’ expertise to help you. Then make your decision with confidence.
For Further Reading:
Brazier, Y. Patient Involvement: what is it and why does it matter? Medical News Today. January 28, 2016. Accessed from https://www.medicalnewstoday.com/articles/305702.php?tw February 24, 2016.
Singh, J. Preferred Roles in Treatment Decision Making Among Patients With Cancer: A Pooled Analysis of Studies Using the Control Preferences Scale. Am J Manag Care. 2010 Sep; 16(9): 688–696. Accessed from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3020073/ February 24, 2016.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.