Helping Patients Manage the Anxiety Behind Contralateral Prophylactic Mastectomy

Lidia Schapira, MD


January 17, 2019

Editor's Note: Does contralateral prophylactic mastectomy reduce breast cancer survivors' anxiety over the long term? Lidia Schapira, MD, talks with Patricia Parker, PhD, of Memorial Sloan Kettering Cancer Center, who published a unique study last September that prospectively analyzed worry, distress, and quality of life in a group of women who underwent contralateral prophylactic mastectomy.

Schapira: Tell me about what sparked your interest in surgical decision-making and specifically surgical decision-making for women with breast cancer.

Parker: I've always been interested in healthcare practitioner–patient communication, and I've talked with a lot of cancer patients about the kinds of things that they're concerned about: what types of information they hope to get from the practitioners and what confuses them. And one of the topics that I really noticed in talking to women was the issue surrounding contralateral prophylactic mastectomy and how challenging it was to make that decision.

Many women say, "I just want my breasts off and then I won't have to deal with this anymore" automatically when they are diagnosed with breast cancer, regardless of whether they are high-risk or not.

And surgeons and oncologists came to me and said, "We're seeing so many more women who want to have contralateral prophylactic mastectomy (CPM) and, for many, we don't think it's clinically indicated." And yet women are coming in very, very set in their decisions to have CPM.

So that is how we began, and after we received a few grants we were able to start exploring the topic. Earlier on I had done a little bit of work looking at decision-making in breast cancer in general, but this issue in particular sparked a lot of interest in me and my colleagues at MD Anderson.

Schapira: How did you go about setting up the research framework to study this phenomenon?

Parker: The initial thing we did was go to the literature, and there is a lot out there in general surgical decision-making; but for this we thought it was particularly important to interview women and get their perspectives because there are many factors that influence these decisions.

So we did a qualitative study to try to better understand the experiences of women. We interviewed some women who had CPM and others who had surgery only on the breast that had the cancer. We also interviewed some women before they had surgery and others after the surgery.

We also spoke with medical oncologists, surgical oncologists, and plastic surgeons, to try to understand the perspective of the medical community and why this was such a challenging issue that kept coming up as an important discussion in their practices.

That's where we started, and then we wanted to look at common psychosocial factors. There was enough literature showing some of the demographics and characteristics of women who chose CPM, but there was less about the psychosocial characteristics and predictors. As a psychologist, I'm really interested in that, but I think that this is a complex decision-making issue, and there are a lot of factors that go into that decision-making process.

Schapira: In interviewing the women, not the professionals, what were the top themes that emerged that drove the decision to ask for more extensive surgery, even if it was not medically indicated?

Parker: The main [theme] that came up over and over was being worried about the cancer coming back and wanting to not have to go through the experience again.

Then there was a lot of information in the media and other places [that featured] women who were high-risk, who either did not have breast cancer and had prophylactic surgery or who did have breast cancer and had the other breast removed as well, [suggesting] that there is more clinical indication and that there are benefits to CPM. I think this causes a lot of confusion out there.

For example, when Angelina Jolie had her prophylactic double mastectomy, the story became really popular, and this was around the time when we were doing some of our research. People didn't necessarily understand or appreciate the impact of having that high risk and what that might mean in terms of their risk for future breast cancer. And their risk for recurrence in an average-risk setting was really more their chances of having a recurrence of their initial breast cancer, and was a bigger concern than getting cancer in the other breast.

Women continually have difficulty appreciating that, even though it's told to them. I think there's just so much fear of cancer in general that they want to do whatever they can to help themselves.

Schapira: Can you expand a little on what you've learned through your research about where patients who are newly diagnosed go to get their information? How much does it weigh on the initial patient consult once they are diagnosed and meet the surgeon or the oncology team?

Parker: That's an area I don't think has been as well researched. When we ask women what their influences are, it comes up that talking with friends or knowing someone who has had breast cancer or has had breast cancer come back is a factor. Another factor is the media, which I think is very powerful; both in terms of the Internet as well as stories of breast cancer patients and survivors. It is really driving some of that. I don't think we [really understand yet] how exactly patients gather this information.

We know that the oncology team, especially the physician's recommendation, is a really important factor, yet in a sense this is unlike some of our other surgical decision-making and treatment decision-making, because patients come in with a very strong sense of what they want to do and sometimes cannot really be talked out of it.

Schapira: You had a study published in Journal of Clinical Oncology in September 2018,[1] in which you compared groups in an academic center and in the community, and followed these women prospectively. Can you tell us about the cohorts—what you found and what that means for practicing cancer clinicians?

Parker: Sure. The primary goal of the study was to look at psychosocial outcomes over time in an average-risk population, which hadn't been done previously. A group of women were recruited from The University of Texas MD Anderson Center, as well as Kelsey-Seybold Clinic (a community practice throughout Houston). Most previous studies have only looked at settings similar to MD Anderson—academic medical centers.

This was really one of the more diverse studies that looked at outcomes of CPM in a more comprehensive way. The sample that we had was quite diverse: almost half nonwhite, ranging in age, and it was an English-speaking cohort, which I think is important because one of the things we found in looking at predictors of who had CPM was that Hispanic women had higher CPM rates than other women, something that hasn't been found in other samples. We don't know exactly why that is, but it may be because these Hispanic women were only English-speaking and may differ in important ways from Spanish-speaking Hispanic women.

It was important for us to not just get a sample of well-educated white women, which is what we typically have in our cancer center populations, and the trends were quite similar across both settings. Also, this wasn't a study to look at who went on to have CPM; in the end we ended up oversampling women who were interested in CPM because we wanted to have high-enough numbers to be able to look at outcomes for this particular study.

Schapira: What were the parameters you chose to study, why did you choose them, and what did you find?

Parker: We were mostly interested in psychosocial factors. We wanted to look at issues and concerns about the "I'll get cancer again" worry, which has come up both in our studies and in other studies as being an important factor. Looking at quality of life, following the surgery we wanted to see how women did in the year and a half after their surgery. We looked at cancer-specific distress and body image concerns. And then we wanted to collect information about how happy women were with the decision—whether there was decisional satisfaction—and also any regrets that the women had. These have been looked at in previous studies but not comprehensively and not prospectively in a population where we were able to look at women who went on to have CPM and women who didn't.

Schapira: Did you find that having CPM actually helped them worry less and lead to better outcomes, or were you surprised?

Parker: We did find actual psychological benefit in terms of reduced worry over time in the women who had surgery. Before surgery, women who were going to have CPM had more cancer worry and more distress. But what we found is that, following surgery, their cancer worry really was similar to that of women who didn't have CPM. However, we also found that there was a cost to [that decision], and that was in decreased quality of life over time compared with the women who did not have CPM. We spent some time trying to think about what that might mean and why those were the findings of the study.

I think that there is a clear benefit in terms of when worry is specifically related to cancer, especially breast cancer. I think it does reduce it; when you have your other breast removed you can kind of say, "Okay, that's something I don't have to worry about for now." But there are additional costs or concerns related to decreased quality of life, potentially, for having a bigger surgery, for potentially more complications, for other aspects of that that women don't necessarily anticipate. So I think that's one of the unique findings of our study that hadn't been shown previously.

Schapira: In your discussion you say that it's important that we use this knowledge to better prepare or counsel women who are newly diagnosed. How do you recommend that we do this? We are already talking about a population that is worried, so how can we incorporate the findings of your research in the decision-making process following a diagnosis of early-stage breast cancer that is not associated with genetic risk?

Parker: There are a couple of different directions where that could go. One of the goals of this particular study (which was funded by the Patient-Centered Outcomes Research Institute) was to look at both clinics and try to get a better sense, clinically and then psychosocially, of how people do following CPM, and look at whether there was an advantage to that. We're in the process now of seeking funding to try to put those constructs together and get a more comprehensive decision tool that would incorporate psychosocial elements, which hasn't been done previously.

For example, in terms of the discussion during the first surgical meeting, you can let people know what they can expect in the year and a half following surgery. Obviously, things could change as time goes on. The other issue that we need to tackle head-on is cancer worry and trying to help women manage some of that worry, to know what could be more temporary for them—what may not last and persist following their cancer surgery. So I think there is room for psychosocial interventions with other personnel, not necessarily the medical staff—the psychologist or therapists or others who can help women who have a lot of worry, when there's time. There is not always time presurgery to help in this decision-making phase, but often there is time to have some kind of anxiety and worry management interventions that might be beneficial in this population.

Schapira: What do we know about the population that is most likely to worry? How did that compare with other population studies?

Parker: Younger women in general have been shown to have more worry and also have more interest in CPM in general. I think that has been pretty consistently found in a variety of studies. Typically, white patients have greater interest in CPM and more worry than non-white patients. In one of our previous studies, we looked at women who didn't have as much accurate information about their breast cancer and ended up having more interest in CPM. So there is also a knowledge component that's really important, which in combination hits what many, many [physicians] do, which is really try to target the information and the knowledge but without addressing the worry component. I think the worry overtakes what patients can comprehend in terms of knowledge, so it doesn't necessarily matter. They may, even when they learn [about] the right knowledge, still be overtaken with worry. So a combination approach of managing both the worry and the knowledge is important.

Schapira: Can you tell us about what kinds of interventions may help mitigate some of that worry, perhaps interventions that have been used in other settings that we haven't thought of?

Parker: We don't fully know yet, but I think interventions that really target anxiety, specifically anxiety reduction or management interventions, can be helpful. Maybe the use of acceptance and commitment therapy, which takes an approach of accepting some of the distress and learning how to live with a little more [worry], would be something that would be really interesting to target in this population. A strong psychosocial intervention that really addresses worry and helps people deal with the understandable worry that they have can be really [helpful].

Schapira: Given your extensive work in clinician-patient communication, are there certain questions or phrases that a surgeon in a community setting could use when first meeting a patient with breast cancer, that perhaps could help bring this out in the open or provide some greater perspective to the conversation?

Parker: Listening is really key in this, and asking some open-ended questions to try to get the patient's perspective on what they're concerned about. For some women, it may be things that are surprising but are very addressable. [It's important to be] able to initiate the conversation and open it up so that the doctor is able to say, "So tell me what your concerns are about having your other breast removed," as well as "What are your concerns going into surgery?"

Those kinds of questions can be really useful, and following up on them by acknowledging and validating those concerns can be really helpful in starting to reduce that anxiety. I think it's also important that all of the members of the multidisciplinary team be involved in the process with the surgical oncologist, the plastic surgeons, the nurses, and the other folks who are involved, because everyone plays a different role; getting consistent information and a consistent approach can be really helpful.

Schapira: Can you help us understand what you've learned from this study as a result of having all of these different time points? How long does it take for worry to go away? Does worry ever go away? What other sources of distress emerge following the year and a half after diagnosis and surgery?

Parker: I think much of the worry starts to dissipate after surgery. I think our work shows that once the surgery is done, there is about a month following surgery when worry actually does dissipate a fair amount, significantly for the women who go on to have CPM, but there is also a slight decrease for the other women.

I think there are a lot of other issues in terms of long-term acceptance of body image, of what it means for them moving forward in terms of quality of life. Quality of life still needs to be further unpacked in terms of what the detriments are for women who go on to have CPM, but we know that different aspects of quality of life are impacted and need to be looked at post-surgery in that year and a half. Some studies show that it potentially takes even longer for some. Maybe had we followed the women for 3 years, we would have seen some better quality of life over time. There are a few studies that suggest that it continues to improve, but 18 months was as long as we were able to follow the women in the study.

Schapira: There are often lots of well-wishers and people who want to support a woman who has just been diagnosed and who is struggling with these decisions. What advice could we give those who are informal advisors to patients? How can they best support somebody who is struggling to make these decisions?

Parker: Help them explore what they are concerned about. Just talking with them, listening to them, and also encouraging them to ask their specific questions to their medical team [would be helpful]. Try to go in and acknowledge the enormity of the decisions that they're making, but really encourage them to include the medical team in their decision-making process. Sometimes women, or patients in general, also have difficulty bringing up all of their concerns because they don't want to overwhelm or take too much time, or for a variety of other reasons, but it's really important to use the time to ask questions, to express concerns, and to know about the data that are out there, which continues to change. People can also be very helpful in just encouraging them to seek out the information from their medical team.

This interview has been edited and condensed.


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