You and your doctor should agree about your care. This is very important. "Patients seem to carry two signs," says Dr. Larry Norton of Memorial Sloan-Kettering Cancer Center. "One says 'Cure me,' and the other says 'Don't hurt me.' " You and your doctor need to work out these issues. Let your doctor know how aggressive or laid back you want to be. Even if your attitude is very different from that of your doctor, he or she should respect your wishes.
For example, what if your doctor recommends aggressive treatment, but you want supportive care only? You need to listen carefully to each other. But if you don't agree, your doctor should honor your decision. And if you choose complementary treatments that your doctor knows nothing about or is uncomfortable with, he or she should tell you that. You may figure out a way to work together. If not, find another physician who will accept your views.
How you make decisions about treatment when you are well may be very different from how you make decisions when you have metastatic breast cancer. A study from England reported that patients with active cancer said they were willing to accept a treatment with severe side effects if it offered just a 1% chance of cure. But those in the study who were disease-free said they would need to have a 50% chance of cure to accept such a treatment.
Also, how you make choices may change over time, depending on your options, family issues, and financial concerns. Women with advanced metastatic breast cancer rarely choose hospice care first if they know there are treatments still available that may reduce the size of the tumor, ease symptoms, and extend their lives. There's always something more to celebrate, a life event to be witnessed—a graduation, a wedding, a birth. Many mothers of young children choose to continue aggressive therapy as long as possible for the chance to spend more time with their children. Each woman makes choices that are right for her and her life.
Not everyone wants to push to the limit. Some women with advanced disease say, "I want to preserve as much quality of life as possible. Since I may not have a lot of time, I don't want the days I have left ruined by suffering from the side effects of treatment."
For others, pain relief is first priority. Pain-relieving medicines are important options. But chemotherapy and radiation—and sometimes surgery—may be the best treatment for relieving pain caused by metastasis.
Tell your doctor clearly and firmly exactly what you have in mind. Talk about the treatment choices together. That way your doctor knows exactly what you want, and you fully understand his or her recommendations.
What you want will also change over time. Your philosophy about treatment and your goals will change depending on how you feel and what else is going on in your life and around you.
"The first time I was diagnosed with cancer, I was in total shock. How could I have breast cancer? But relatively quickly, my husband Jim and I shifted gears. This was going to be a challenge—not a death sentence. And that's how we approached it. I didn't live with the fear that it could come back. I wasn't naive about it. . . .I knew that I had given it my best shot with radiation and chemotherapy, and complementary medicine. And then it came back. That was a heavier blow. The initial part of it was hysteria and tremendous fear. And then, like the first time, we shifted quickly into, 'We can deal with it.' People do live with metastatic disease. After the initial shock, I felt like: 'This is a challenge, I'm not dying, this is a challenge.' "— Susan