What do you know about the details of your tumor? One recent study of 500 women in Northern California found that fewer than 60% of patients could correctly identify the characteristics of their tumor although up to 82% of patients thought that they knew. Older women and those with lower educational levels exhibited less knowledge about their own disease. Minority women were also less likely to be aware of the details even if they were highly educated.
Why does this matter? I've heard plenty of women say they don't want to know the details. They just want the doctor to tell them what they need to do. It matters because women who understand why their doctors are prescribing a particular course of treatment are more likely to follow through with it. In this study, 86% of the women who knew they were hormone receptor positive received hormone treatment compared to 71% for those who didn't know their receptor status. I would imagine the rates of long-term compliance drop lower for women who don't understand why the drug that is giving them hot flashes or aching bones can reduce their chance of recurrence.
The California survey included women with cancer staged 0-III. A different survey conducted in 2014 by Novartis of women with metastatic breast cancer and their caretakers found that although they had higher levels of understanding, 20% of patients did not know their Her2 status and 16% did not know their hormone receptor status. While this is better than the women in the California survey, it isn't adequate because these women had so much more at stake. Many of the new drugs are targeted for tumors with specific characteristics, so it's important to understand why the drug that has been a miracle for your friend might not help you at all.
In some cases the problem is with the doctors. Some of them don't have good communication skills. Some of them make judgments about how much information a patient should know — judgments that might be different than yours. For example, 27% of the oncologists in the Novartis study said that they do not always explain that metastatic breast cancer is incurable, perhaps because they think specific patients can't handle that news. All doctors feel the pressure of time. But you can't solve the doctor part of the problem. Here are some things you can do on the patient end.
1. Write down questions ahead of time. The act of formulating questions helps you think through the issues that are important to you. Having the written list in your hand is a visual signal to the doctor that you have questions, and it insures that you won't leave with an important question unasked. When the doctor was about to dash out of the door, I learned to say, "Wait. Let me check my list of questions and make sure I've asked them all." That gave me time to not only look at my list, but to think about what had already been said so that I could ask follow-up questions.
2. Take someone with you to your appointments. Having an extra pair of ears to interpret what the doctor is saying is crucial. The patient is often too stressed to take in all the information, especially in those crucial first appointments right after diagnosis. The person who goes with you should let you be in charge of the appointment, but you should allow some time near the end for your relative or friend to ask clarifying questions that may not have occurred to you.
3. Ask for copies of all your pathology and lab reports and keep them in a file. Not all doctors will tell you what is in your reports probably because many of the details are not important, but having your own copies of records will help you compare changes over time. The language in these reports is designed for other doctors, not for patients, so you might read our Layperson's Guide to Understanding Your Pathology Report to help you. A good medical dictionary like the Medical Library Association's on-line medical dictionary can also be valuable.
4. Ask for informational brochures about your type of cancer and the treatments you will be receiving. Many drug companies provide free information written in simple language. Your doctor may have these in racks in the waiting room. The nurses can help you find the pamphlet that speaks to your specific needs. Read all the handouts and fine print you get from the doctor and add them to that file you started for your lab reports.
5. Be honest with your doctor about your concerns and your side effects. I was depressed after my pathology report showed 16 positive lymph nodes. I was sure they indicated my death was imminent. Eventually, I got up enough nerve to let the doctor know about my worries. He looked surprised and explained more about how the lymph node count affected my prognosis. He hadn't realized that I was so worried. I had to tell him. In the Novartis study 73% of the patients said they wanted more information about managing side effects, but 43% admitted that they don't always report side effect problems. Doctors can't read our minds. We have to do our part.
6. Be confident that you can learn what you need to know. All too often we assume that the doctor knows all and that we can't understand complicated medical concepts. Women without much education or scientific background may be especially hesitant to ask for more information. However, if you are persistent in asking questions and reading more about your type of breast cancer, you can learn the information that can save your life.