Over the past decade, breast surgeon Deanna Attai, MD, has built a reputation as a physician who’s active in online patient groups. So it’s not surprising that she got her idea for her latest study from Twitter. She frequently observed patients with breast cancer posting about their frustrations talking to their oncologists about the downside of taking endocrine therapy. “I saw multiple comments along the lines of ‘My oncologist is great, but when it comes to endocrine therapy, every time I try to talk about side effects, the conversation just stops,’” said Dr Attai, who is assistant clinical professor in the department of surgery at UCLA Health at the David Geffen School of Medicine.
Or patients complained that their doctors had advised them to simply accept common symptoms of weight gain, joint pain, loss of libido, vaginal dryness, or impotence because there weren’t treatment alternatives. “It struck me that this was a topic I hadn’t seen written about in this way that addressed this frustration among patients,” she said.
So Dr Attai and her team tapped 9 patients who were active in breast cancer social media communities to create a survey for hormone receptor–positive patients about their experiences with endocrine therapy and communication with their health care providers. “Who’s better qualified to design the questions than the people who are living with the side effects?” she said, adding that conventional quality-of-life studies usually don’t measure what’s meaningful to patients.
Researchers received responses to the anonymous online survey from 2353 women and 54 men. The results, which were published in August 2020 in the Journal of Cancer Survivorship, found that 91% experienced side effects, which prompted about one-third of patients to discontinue therapy. Nearly one-third of respondents reported that they felt their concerns were “dismissed or minimized” in discussions with their cancer care team. “I was surprised that 30 percent felt they were brushed off,” said Dr Attai. “I thought it would be lower.”
This study is important because it gives voice to our experiences, says breast cancer survivor and patient advocacy leader Sue Friedman. “Most clinicians are trained to tell patients what’s in their best interest and aren’t always listening to patients’ concerns,” said Friedman, who is executive director of the national nonprofit organization Facing Our Risk of Cancer Empowered (FORCE), which is based in Tampa, Florida. Yet for patients, these side effects can be a big deal. “Hormone therapy affects your libido, energy levels, and weight. These are things that are essential to your very well-being,” she said, adding that the results send a critical message to drug researchers about the need for new therapies.
Friedman said she hopes the research will prompt oncologists to dedicate more time to discussing side effects with patients as well as take the initiative to broach the topic. “Some patients might not feel comfortable bringing us these conversations, especially related to sexual concerns,” she said.
Dr Attai added that such empathy could ultimately improve patients’ drug compliance. “I want physicians to understand that our patients might be struggling with these medicines more than they let on, and they’re also struggling with worry about recurrence if they stop early,” she said. More than half of respondents suggested that doctors set aside extra time during office visits — or perhaps a separate visit via telehealth — to educate patients about expected side effects and discuss strategies to manage them. (In the survey, 40% reported that diet and exercise were helpful.) “This survey helps us appreciate what a challenging position our patients are in,” Dr Attai said.
Berkowitz MJ, Thompson CK, Zibecchi LT, et al. How patients experience endocrine therapy for breast cancer: an online survey of side effects, adherence, and medical team support. J Cancer Surviv. Published online August 17, 2020. doi:10.1007/s11764-020-00908-5