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Living well with breast cancer by choosing wisely: A conversation with Amy Berman

Harold Pollack is the Helen Ross professor at the School of Social Service Administration and co-director of the Crime Lab at the University of Chicago.

This year has brought welcome attention to end-of-life care issues, aid-in-dying, and related matters. To my mind, the most gripping conversations concern how we can help people—help ourselves—to live well in the presence of life-threatening or life-altering conditions.

Amy Berman has thought quite a bit about these subjects. She is a geriatric care expert and a senior program officer at the John A. Hartford Foundation.  Last September, I interviewed her about her own experiences living with stage-IV inflammatory breast cancer.

I caught up with her again this week to see how things are going. We discussed how she is using recommendations from the Choosing Wisely effort to manage the care of her spreading cancer. Below is an edited and condensed transcript of our conversation.

Harold Pollack: The last time we talked, you described the experiences of being a Stage IV breast-cancer patient and the ways that you addressed your palliative-care options. More than a year has passed. How is it going?

Amy Berman:  It's going well. I'm working, playing, getting to do all the things that I like to do. I'm four years in. At the beginning of all of this, the prognosis was 11 percent to 20 percent that I would survive five years. So I do always have that in the back of my mind. The cancer has spread. It's a non-curable cancer, incurable cancer.

HP: Do you have any sort of a prognosis as far as the timing of how long you can expect to remain healthy?

AB: No, I don't. Today is a great day, but I really don't know. At any point. I could turn a corner. One thing I do know, Harold, is that I would have had four terrible years if I had made a different set of decisions. So I've already won.

HP: When you talk to your medical advisers, do they speak with you in terms of a survival curve? Or do they basically say, "Let's take this one day at a time, and it's not really fruitful to make those sorts of predictions?" How do those conversations go?

AB: We had the prognosis conversation up front. I had another conversation with my oncologist about four months ago to get some sense. Since I had been doing well up until that point, I just asked her: "Does this mean that I'm going to have a longer trajectory?" She said, "It really is not clear. I mean, it's just not predictable in that sense." A scan about a month and a half ago showed that the cancer had spread to new areas, so she was accurate.

HP: It's in your rib?

AB: Yes, in my back. It's now in my fifth and a little bit of my sixth rib. It was already at the bottom of my spine. It's also in the front, the middle of my chest in the front. So it's in the soft tissue. Inflammatory breast cancer is rare. Only about 1 percent to 2 percent of all breast cancers are this kind, and it has the worst prognosis. Among most people who have breast cancer, I think about 87 percent survive to five years. For somebody like me, who has been diagnosed as Stage IV with this cancer, 11 percent to 20 percent survive to five years.

HP: You've had a very good four years in a lot of ways. What are the kinds of things that you were able to do because you managed your care with a heavy emphasis on palliative care?

AB: Palliative care tends to my pain and symptoms. It really helps me make good decisions about care that's going to support good quality of life for me. Because of that, I've had the good fortune of still working. I'm working full-time.

I get to still have fun, and my version of fun is travel. I'm a little bit of an adventure junkie. Last summer, I jetskied to the Statue of Liberty. I've climbed the Great Wall a couple of times since diagnosis. Last January, I went camel-back riding in the Jordanian desert.

HP: You've also written quite a bit about how you're using the Choosing Wisely approach to manage your care. What is that?

AB: Choosing Wisely is an initiative led by the American Board of Internal Medicine. It's brought together different provider organizations. Each of these organizations decides what is most valuable to them. They identify tests or procedures that might be unnecessary, potentially harmful, of lower value; so people can avoid care that isn't great and instead choose things that will give them better health outcomes and lower cost.

HP: When I talk to many people in the health-policy world about how to deal with cost, the conversation quickly uses words like “rationing.” That's sometimes what has to be considered. But much of what I've talked about with you concerns how you avoid care that is not helpful. This may or may not save money, but you are trying to avoid overaggressive treatment given the goals you have set for your own life and your own well-being. I don't think people understand that that's what a lot of this conversation is about.

AB: Ultimately, most people are going to reach a crossroad of serious illness… Unless they have a sudden accident and they're off the face of the earth, they're going to be dealing with the reality of making choices about their care. And in some situations, people are not going to get better no matter what the care is.

It's very important that people have a clear understanding about their condition, their options, what it's going to feel like now, the benefits, the costs. Then they can make these value-based decisions that fit with their goals. They're much more likely to support these decisions and to practice good-health behaviors when they're engaged and knowledgeable about their own health.

I went to one provider who wanted to throw everything at the cancer--which sounds fine to most people except it was not going to get me better. They still would have been willing to do chemotherapy, mastectomy, radiation, more chemotherapy, throw everything at it. At the end of the day, they would have been ruining my quality of life. I would have gone through all of that if I would have gotten better later, but I wouldn't have.

HP:   These issues arose in your radiation therapy for your current metastases….

AB: I am getting treatment. I've been treating the cancer throughout. What I'm trying to do are the things that will give me the best quality of life for whatever period of time I have. That’s how I get to do crazy things, like riding camels. When the cancer moved into the ribs, it caused a lot of pain, a really deep pain. It hurt to the core.

Instead of having multiple radiation to the site, Choosing Wisely’s recommendation is to have something called single fraction: one dose of radiation to the bones and that's supposed to knock out the pain. Large studies involving 16,000 patients or more indicate that this single-fraction approach provides the same health benefits as more extensive radiation treatment. Instead of paying for six or 12 or more doses of radiation, a single dose lower be less expensive, and would knock out the pain. I had the one dose. I felt great, and I was on an Acela train to Washington, D.C. the very next morning.

HP: No doubt complaining about the Wi-Fi like everybody else.

AB: Exactly.

HP: You're so vivacious and open about your treatment. People watching us now might be a little surprised that we’re having such a relaxed conversation what it's like to face stage four cancer as you do. How do other cancer patients or others react to you?

AB: The cancer community is a very supportive community. People are tremendous. We respect the choices that each of us has chosen. There is no one right way for everyone. That's really the point: to have the right information to be able to be part of a value-based decision.

The most poignant e-mails and letters I've gotten have been from families of people who have passed away from cancer, and these family members wished that they had gone a different path. They wish that, in the last weeks of life, that they hadn't thrown chemotherapy and aggressive treatment at an incurable situation.

One woman talked about her mother. She said that her mother had stopped aggressively treating the cancer. This woman—the daughter--was devastated. She thought that her mother had given up. After reading one of my pieces, she realized that her mother was still treating the cancer. She was getting a treatment. She just wasn't doing the everything. They had time together, and that time was the most precious thing. The daughter just never really thought about that before. Her mother had opted to have quality of life and quality time in an incurable situation. It just changed her way of looking at what is good care.

HP: It’s so important for family members to be able to understand and trust the care process itself, to be comfortable not only with the decisions that are made, but just to have that sense: We as a family have proceeded sensibly. When someone you love is very sick, you feel a tremendous responsibility to help. It's not always clear that you can. Yet you feel this intense responsibility.

To know that this care was well-handled, whatever the outcome, gives people comfort. Obviously, people always hope for medical miracles. Yet to know things were well-handled gives people some peace of mind. I don't know if that's been your experience.

AB: I think there are advantages simply to being able to discuss why we make the decisions we make, but I think to really take in enough information that we make choices that are going to improve our lives and not waste our lives. If I had followed that very aggressive approach one doctor had suggested to me, considering that there is no evidence that it would have given me any benefit, it would have cost my family real money. It would have taken me away from my family. I would not have been able to work. I would have felt terrible, which is the least of all of the problems, but I wouldn't have been able to be there as a mother, as a daughter, as a friend, as a sister. I wouldn't have been the person that I've been able to be for the past four years. The potential is to take away everything.

HP: How do you think about money issues when you think about your own care? Are there things that you think might be of value, but that are too expensive in terms of your family's financial situation?

AB: Like everybody else, I have limited resources, but I'm very fortunate. I have a great employer. I have a great job. I have the ability to go anywhere in the country to see anyone. I could leave the country to see somebody. If I wanted to chase windmills, I could certainly afford to do that, but it's not going to get me to a better place. There's no evidence to suggest it.

I did actually go and see a second opinion, somebody who was considered top in the field in this particular cancer. They didn't have an answer. There simply weren't answers for this. If I want to try experimental drugs or go into a clinical trial or do any of those kinds of things, one concern is that I'm going to trade off how I feel now. I would give that up for very little and, honestly, no evidence-based suggestion that I'm going to get better. That's the one thing that I have, so money really isn't necessarily the issue. I mean, I've got limits, but that's not the thing that holds me back.

HP:  Now, what's your next adventure?

AB: I'm going off to the Christmas markets in Germany and Prague, drinking good wine.

HP: It’s wonderful to talk to you. I'm sure we'll be checking in again.