Patients increasingly are more involved in the decisions they make with their physicians. As vice president and program director for the Bay Area affiliate of Cancer Support Community in Walnut Creek, Calif., Margaret Stauffer trains counselors for a new program called Open to Options, which helps patients express their concerns to their doctors and assists them in formulating questions. Stauffer, also a licensed marriage and family counselor, has helped many patients navigate their options.
Q. When patients are first diagnosed, do they typically want to go the aggressive route?
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A. There are a variety of reactions. Many people, particularly if they're young, want to do everything they can to combat the illness as aggressively as possible. Where I sometimes see people wanting to consider whether or not to do treatment, it is usually if they are quite a bit older and want to preserve their quality of life they have or if they are people who are a little bit reluctant to do Western medicine.
Q. How does "active surveillance" -- or monitoring the disease -- come into the conversation?
A. For most of the people I've seen with (chronic lymphocytic leukemia), it comes from the doctor. The impression that those physicians convey to their patients is that it's really in their best interest to wait to a certain level because treatment may only be effective for so long. Certainly for that disease, there would be a strong protocol for active surveillance.
With prostate cancer, it's a little bit more mixed. That's where there have been a lot of conversations in prostate cancer support groups about what works best for which people. For some, it's active surveillance. But for others, they want to throw everything they can at it.
Q. Are some personality types more suited to this approach than others?
A. Certainly, somebody has to be more comfortable perhaps with ambiguity. If somebody wants to take action right away, they're probably not going to want to opt for something that is less aggressive. Some people just find that so difficult to live with -- the fact they know they have cancer but are not doing anything in terms of Western medicine to treat it.
Q. What can a patient do to help reduce anxiety?
A. Having some form of stress reduction such as mindfulness meditation or guided imagery can certainly be helpful. Doing things like exercise, which we know as having an impact on the immune system, being mindful of what they're eating -- a high nutrient diet with cancer-reducing properties -- all of those things are things they can do to feel they are actively doing as much as possible while they're in the limbo mode.
People should also seek support. Mobilizing their support system -- whether as part of a support group or within their own social system -- that's really important for people when they're fighting something like this.
Q. What kinds of questions should they ask?
A. With Open to Options, we're really trying to elicit from them what their situation and concerns and priorities are. If they've had active surveillance suggested as possible treatment, we can discuss that, but we're really trying to stay as neutral as possible so they can arrive at the point where they can discuss it with their medical team.
But it's always good for people to ask the questions of their doctor: What's the benefit of waiting and what's the cost of waiting in terms of health? Whether they have a cancer that has active surveillance as a protocol or one that does not, sometimes people feel rushed into a making a decision when maybe they do not need to be rushed. So people need to ask whether it really makes a difference to wait a month or two months.