Making cancer decisions

It likely was easier in the era when patients were expected to simply follow doctors' orders. Most of us would not want to return to those paternalistic days, but it can be weirdly comforting to be told what to do by a trusted authority figure. Now good doctors involve their patients in decision-making. While this approach creates a positive sense of involvement and empowerment, it can also cause some anxiety, uncertainty and pressure — especially if family members or friends have different ideas.

No one is thinking at her/his best at the time of a new cancer diagnosis or if there is progression or other issues that require treatment choices. As cancer care has become more sophisticated, there are often several decision points, each one bringing choices. We can only know retrospectively if we chose correctly, and, even then, we really don't know what has been responsible for our continuing good health.

Making treatment choices is an ongoing part of cancer care. In the beginning, there may be many decisions to be made. You may be faced with identifying the best doctors and/or treatment facility as well as considering surgery, radiation, and/or chemotherapy or other systemic treatment. Sometimes it is straightforward, and there is a single recommendation. Sometimes, however, there are several seemingly equally good choices, and you are asked to make a decision.

We are blessed in Boston to have a number of world-class hospitals and cancer centers. Although the medicine may be the same at each, the cultures and the care are a little different. At BIDMC's Cancer Center, we have always prided ourselves on being Harvard with a heart. We always try to think about you as an individual with a full life and priorities and dreams. 

For years, in the company of an experienced oncologist, I taught a course for our first year Hematology/Oncology Fellows. It was informally called: Everything you need to know about being an oncologist except the medicine. We knew they were learning about the science and cancer treatments from many others, and our goal was to educate them to think, too, about a person's life situation, family responsibilities, professional obligations, feelings and dreams.

This is the moment when many patients fall back on the question: What would you recommend to your spouse or child? While this isn't a bad question, there is no guarantee that you will receive an authentic answer. In addition to evading the question, the doctor may well just turn it around, saying something like: You need to make the choice that is best for you.

The following strategies can help you keep these decisions in perspective and ensure you are making choices on your own terms:

• Whatever the situation, create a list of pros and cons.
• Get as much information as you can. You can decide whether you want to immerse yourself in the medical literature or read very little. You can delegate the research to a friend or family member or ask your doctor to explain the options and make recommendations.
• Stick with reliable resources, such as the American Cancer Society, the National Cancer Institute or the American Society of Clinical Oncology’s patient website. Be careful not to do too much internet research, and stop reading if you start feeling anxious. For everyone, there is a moment of overload. Remind yourself that you are not able to learn everything, and that it is not necessary to do so.
• You almost always have time to consider your choices. Cancer is very rarely a medical emergency.
• Consider speaking to a few people who have a diagnosis similar to yours or who have considered the same surgical or treatment options. Do remember that everyone and every cancer is different.
• All of us have different priorities and worries, and identifying yours may make things more clear. For example, if you have small children, you may be most concerned about the recovery period and your ability to meet your responsibilities.
• Try not to obsess over statistics or worry that there is only one right choice. Statistics describe the experiences of large groups of people; no one knows what the outcome will be for any one person.
• Pay attention to your gut as well as your brain.
• It is critical that you respect and feel comfortable with your doctor. If you don't, find another one.
• Identify the worst possible outcome of a set of options and do your best to avoid it. This strategy can help you focus.
• Virtually none of these choices mean the difference between life and death. If they did, your doctor would be telling you what to do. For many people, the choices are among several good treatments and, in some cases, include clinical trials.
• As the patient, you always get the final say. This is your life, so trust your instincts.