Do men and women use different strategies to choose cancer treatments? A study gets people talking about how patients make medical decisions, and what can be done to guide them.
Do gender stereotypes factor into the cancer experience?
A study conducted by a major cancer center suggests that they do.
When it comes to making treatment decisions, approaches used by newly diagnosed breast and prostate cancer patients break down along stereotypical gender lines, according to the study commissioned by Memorial Sloan Kettering Cancer Center in New York. Men were more deliberative, analytical, and data-driven in their approach, while women were more emotional when making their decisions.
The results have sparked analysis and debate but, ultimately, health care professionals have seen them as an opportunity to learn what their patients need, and to do a better job of guiding them through the decision-making process.Treato, a health care data analytics company hired by Sloan Kettering, conducted the study. Turning to online support groups, Treato culled posts from both breast and prostate cancer sites between 2012 and 2014. For prostate cancer, the company assessed 1,339 posts, from which 633 were chosen for further study because they mentioned treatment decisions and/or Sloan Kettering. On the breast cancer side, Treato looked at 3,585 posts before selecting 808 posts. The company then analyzed these posts and used them as the basis for its conclusions.
The research team found that prostate cancer patients rely on the latest studies about treatment options, as well as experts’ advice from books recommended online. They are more likely to weigh the cost-benefit ratio of treatments and take the time to consider the pros and cons of each of their choices. Even when discussing emotions, male patients communicate in matter-of-fact language, talking about their feelings in terms of quality-of-life and length-of-life concerns.
Women, on the other hand, tend to have a more emotional reaction to their diagnosis. Their desire to avoid “going through this whole thing again” takes center stage, often resulting in their choice of the most aggressive therapy— bilateral mastectomy. They appear to be more distrustful of their physicians and instead seek guidance from their online peers, who have gone through a similar experience. Women often discuss fear of recurrence and are influenced by stories of other women whose cancer recurred after not pursuing aggressive therapy.
Avice Meehan, chief communications officer at Sloan Kettering who commissioned the study on behalf of the marketing department, expressed surprise at these findings. Nonetheless, she views them as a way to better understand Sloan Kettering patients and those who look to the cancer center for information. “We want to better serve the broader community by having a compelling and well-informed picture of what people are experiencing during the early stages of their cancer journey,” she says.Spurred by senior leadership, this study is part of a larger initiative at Sloan Kettering to “think long and hard about the patient experience and how we engage with our audience,” notes Meehan. “In particular, we’re trying to put ourselves in the shoes of those seeking information from us on our website. Our goal is to make the information and language ‘speak to them’ and ensure that the site is easy to navigate.” Meehan acknowledges that this was by no means a highly quantitative or randomized scientific study but “a way to gain some information from people who turn to online communities at a very stressful moment in their lives.” She adds that these two types of cancer were chosen because they are among the most common cancer types, generally break down along gender lines and involve people of different age groups following different decision paradigms. As part of its information-seeking effort, Sloan Kettering also has conducted some quantitative research in the form of surveys and has held focus groups.
Although the sharp differences in the male and female approaches to decision-making were somewhat unexpected, Meehan suspects that they may be the result of the different timelines and treatment consequences inherent in each of these types of cancer. “Men feel they have more time to gather information,” she says. “And they are grappling with how treatment is going to affect body and sexual functioning, as well as their self-identity. They are dealing with a very profound set of decisions.”
Jim Kiefert, 77, a long-time prostate cancer survivor who has run faceto- face support groups in Olympia, Washington, for the past 14 years and is a member of Us Too, an online community, agrees with the study’s findings. “The side effects make men especially analytical,” he says. “Young men tend to worry about their sex life, older men worry about incontinence. Either way, these are major quality-of-life issues.”
In Kiefert’s experience, only about 10 percent of the men he encounters respond quickly and emotionally. “They want to hurry up and get the cancer out,” says Kiefert. “After completing treatment, they come online to figure out how to deal with its side effects.”
John P. Mulhall, a urologist who directs the sexual and reproductive medicine team at Sloan Kettering, says that in his experience, the men who tend to use online forums “are either happy with their outcomes and want to help others or so miserable that they’re starving for information from anywhere.” Mulhall feels that those patients in the middle range, who are reasonably happy with their care and outcomes, tend to visit those sites less frequently.
As far as the analytical versus emotional question goes, Mulhall says that he sees both approaches to decision-making in his practice. “Men don’t like to portray their weaknesses, but I have had 50-year-old men with a diagnosis of prostate cancer with tears in their eyes, struggling to make the best possible decision.”
Julie Lanahan, a 43-year-old breast cancer survivor from Timonium, Maryland, fits the profile identified by the study. She found her tumor while nursing her fourth child. “I looked to message boards for information, but I knew even before I found out the details about my tumor that I wanted to have a double mastectomy,” recalls Lanahan, who was diagnosed when she was 38. “I wanted to be done with breast cancer.”
For most women, double mastectomy does not improve survival compared to less aggressive surgery, but does require additional surveillance and the possibility of more surgery. Yet patient preference is also an important part of breast cancer treatment, and Lanahan considered double mastectomy the best strategy for fighting her stage 2B tumor, which was HER2-, estrogen receptor- and progesterone receptor-positive. Her goal was to definitively put breast cancer behind her. After her surgery, Lanahan had chemotherapy, radiation and treatment with Herceptin for a year. She currently takes tamifoxen, standard-of-care treatment for many women with estrogen receptor-positive tumors. Although Lanahan made her decisions through discussions with her doctor and husband rather than by conferring extensively with online discussion groups, she now knows firsthand the power of support groups. She co-facilitatess the face-to-face support group for cancer survivors sponsored through the Ulman Cancer Fund for Young Adults, based in Baltimore, Maryland. Through this work, Lanahan finds that most cancer patients are looking for ways to empower themselves and take control of their disease.
For some women, control means being in command of information and statistics, according to Jeanne Carter, a clinical psychologist and certified sexual health therapist who heads the Female Sexual Medicine and Women’s Health program at Sloan Kettering. In her practice, she sees women undergoing a range of deliberation processes and making varied treatment choices.
“In addition to looking for information and statistics, they also want to talk to women who have been through the same experience,” says Carter. “Then their choices are filtered through their personal needs and preferences.”
For example, Carter sees some women who derive a great part of their sexual pleasure and identity through their breasts. “A woman like that may not feel comfortable having a bilateral mastectomy, but will instead opt for a more conservative treatment approach,” notes Carter. “Still other women may want their breasts to look the same and select bilateral mastectomy, knowing they can have reconstruction after surgery.”
The study, too, found that women saw reconstruction as “their hopeful endpoint, when the cancer is permanently left behind.” That goal appears to be a strong motivation for many breast cancer patients.Among other researchers and advocates in the field, these findings raise as many questions as they resolve. Caroline Edlund, director of online support groups at CancerCare, a leading national organization providing professional support services for cancer patients and survivors, feels that the findings may oversimplify the decision-making process. “These are difficult decisions, not necessarily based on fear of recurrence,” says Edlund. “Quality-of-life issues, side effects of chemo and whether mastectomy is a way for women to avoid followup treatment are among the concerns that women discuss in our own online breast cancer groups,” notes Edlund. CancerCare runs its breast cancer support groups in a message board format, not as a live chat, so participants can log in whenever they want. Participants must be accepted into the groups, and each is moderated by a social worker.
In fact, online groups vary considerably, an issue that was not addressed by this study. For example, breastcancer.org, one of the largest online communities and the source of many of the posts analyzed by Treato, does not require participants to have an online account to view the discussion board. But if a participant wishes to initiate a thread, respond to comments or send a private message to another member, that online account is required. Unlike CancerCare, members do not have to be accepted into the group. It is unclear whether such variations make a difference in group dynamics. Nonetheless, according to Meehan, the findings indicate that these online communities are extraordinarily powerful and can be very helpful. Yet participants also must view these posts with some caution. “Each group has its own personality and identity,” Meehan says. “It’s important for participants to understand that these communities are not the final word. They must assess whether what they’re seeing online is right for their circumstances.”
Some researchers also question whether comparing decision-making among men and women is even the right approach. Steven J. Katz, co-founder and director of the Cancer Surveillance and Outcomes Research Team (CanSORT) at the University of Michigan, views a cancer diagnosis as “the great equalizer, a situation where clinicians are less likely to see gender effects. In fact, says Katz, “there is more variability among individuals within each group than between men and women.”
Katz sees a downside to this study. In his view, it could lead to prejudgments on the part of doctors about how to approach their patients, which could be “kind of dangerous. We wouldn’t want doctors to prejudge patients on the basis of gender, race or anything else.”
That said, however, Katz believes that decision-making is tremendously difficult, with few tools available to help patients as they embark on this process. To fill this gap, CanSORT has received a grant from the National Cancer Institute to develop a robust online tool for newly diagnosed breast cancer patients. Delivered in a tablet format, the tool provides key facts needed to make an informed decision and a decision-making task that helps women clarify their values and preferences. The tool also suggests ways for women to better engage with their doctors. The clinical trial for the tool is currently underway, with results expected in the spring.
Meanwhile, Sloan Kettering is continuing to process the findings from its study, which represents the institution’s first look at the role of online communities. In fact, the findings have already been useful. They were taken into account during the spring relaunch of the Sloan Kettering website.
“Overall, the study provides a snapshot of the newly diagnosed and the mindset of patients making choices,” says Carter. “Asking these questions is a positive thing. The information about what men and women feel and find important will only serve to help us care for them more effectively.”