SAN DIEGO—While the prospect of undergoing radiation treatment is a fearful one for most cancer patients, a new survey among breast cancer patients suggests that most women found therapy far less challenging than they feared.
Nine out of 10 surveyed patients reported that their experiences with radiation therapy, including overall and specific long-term and short-term side effects, was less “scary” than they anticipated, according to a study presented at the American Society for Radiation Oncology Annual Meeting (Abstract 85).
Moreover, almost 90 percent of respondents agreed that, if future patients knew the reality of the radiation therapy experience, they would be less afraid of treatment.
While the efficacy and toxicity of breast radiation has been extensively studied, little has been known until now regarding patient's perspective on their treatment experience, said Narek Shaverdian, MD, lead author of the study and a radiation oncology resident at the David Geffen School of Medicine at UCLA.
He and his colleagues found that almost half of the women reported that they had heard or read frightening stories about radiation therapy, and more than 90 percent were initially fearful of undergoing radiotherapy.
“Radiation oncologists know firsthand that our patients come in with fears and sometimes misconceptions. Unlike many other treatments and fields of medicine, it is very hard to imagine what radiation therapy is like,” he told a press briefing.
“Advances in radiation therapy technologies over the past several decades and the increased use of hypofractionation—where radiation is given in larger doses across fewer sessions—have afforded patients more convenient treatment options, as well as lower toxicity rates in many situations,” explained Shaverdian. “I am hopeful that most patients are not incapacitated by fear.”
Respondents reported their original fears about radiation treatment, and how short- and long-term toxicities compared to initial expectations by asking if the actual experience was “as expected,” “worse,” or “better than expected.” They were also asked about how their pre-treatment beliefs about radiation therapy compared to the actual experience.
“Our study shows that women who received modern breast radiation therapy overwhelmingly found the treatment experience far better than expected. The negative stories out there are frightening and pervasive, but they generally are not reflective of the actual experience,” added Susan McCloskey, MD, MSHS, Assistant Professor of Radiation Oncology at the David Geffen School of Medicine at UCLA, leader of the breast program in the UCLA Department of Radiation Oncology, and senior author of the study.
A total of 502 women, all breast cancer patients treated at a UCLA-affiliated multidisciplinary breast cancer clinic between 2012 and 2016, were asked to describe their actual experience versus what they expected to experience. All of the women had 6 or more months of follow-up without tumor recurrence.
The findings were based on 327 survey responses, with a median survey completion 31 months (range 6-61 months) after completing radiation therapy. Survey questions assessed fears and beliefs about breast cancer treatment and side effects, as well as how the actual experience compared to initial expectations.
The respondents represented different disease stages: 18 percent had stage 0 breast cancer, 38 percent stage I, 34 percent stage II, and 9 percent stage III. All underwent radiation therapy delivered as either standard whole-breast radiation therapy, with or without regional nodal coverage, hypofractionated whole-breast radiation therapy, post-mastectomy radiation therapy, or partial breast radiation therapy.
Among the women, 82 percent underwent breast conservation therapy, 13 percent underwent axillary dissection, 37 percent received chemotherapy, and 70 percent received adjuvant endocrine therapy. Radiation treatments were as follows: 42 percent standard whole-breast radiation therapy, 28 percent hypofractionated whole-breast radiation therapy, 22 percent regional nodal radiation therapy, 6 percent partial breast radiation therapy, and 2 percent chest wall radiation therapy.
The most feared treatment at time of diagnosis was 55 percent chemotherapy, 36 percent surgery, 7 percent radiation therapy, and 5 percent endocrine therapy. Sixty-eight percent of patients endorsed that they initially had little to no knowledge about radiation therapy.
Among respondents, 90 percent said the actual experience was “less scary” than anticipated, while overall short- and long-term side effects of radiation “were better than expected or as expected” for 83 percent and 84 percent, respectively. A total of 89 percent of the women agreed with the statement that radiation therapy was not as “bad as they say it is” and 90 percent also agreed that, “If future patients knew the real truth about radiation therapy, they would be less scared about treatment.”
They also said side effects were less severe than, or as expected, for short-term breast pain (75%), skin changes (61%), and fatigue (78%), as well as for long-term appearance changes (85%), breast pain (79%), breast size changes (73%), and breast textural changes (70%).
Among the women, more than 80 percent reported they had little to no prior knowledge of radiation therapy at the time of their diagnosis, yet nearly half (47 percent) also shared that they had previously read or heard “frightening” stories of serious side effects from radiation therapy.
Nearly all women surveyed (94%) were initially fearful of receiving radiation therapy. The most common initial fears were concerns about damage to internal organs (40%), skin burning (24%), and becoming radioactive (7%).
Among 327 respondents, eight women (3%) found the negative stories they had read to be true, and six women (2%) found the negative stories from family and friends to be true.
Nine in 10 survey respondents agreed that “After treatment, I now realize that radiation therapy is not as bad as they say it is,” and/or that “If future patients knew the ‘real truth’ about radiation therapy, they would be less scared about treatment.”
There is significant misinformation and fear about breast radiation therapy, but the survey data can play a critical role in counseling future patients and providers, the researchers said.
“We hope that these data, which reflect the voices of past breast cancer patients, can help to counsel future patients and their physicians on the actualities of the modern breast radiation therapy experience,” said Shaverdian. “Patients who have received this treatment provide the most credible account of its actual impact, and their accounts show that outdated, negative stereotypes of breast radiation are almost universally found to be untrue.”
ASTRO Board Chair Brian Kavanagh, MD, Professor and Chair of the Department of Radiation Oncology at the University of Colorado, who moderated the panel, said the study is one of several presented at the meeting that address the impact of treatment on patients.
“In my opinion, these are among the most important studies presented at the meeting this year,” he said. “What we've tried to do, in addition to sharing cutting-edge discoveries, new technologies, and new forms of cancer treatment, is to raise awareness about the many other facets and challenges that patients experience.
“If we're trying to optimize the quality of care for our patients, we need to be comprehensive in that regard. We need to be very sensitive to the struggles they are facing ... and understand their fears,” Kavanaugh told the briefing.
Reshma Jagsi, MD, PhD, Professor and Deputy Chair of the Department of Radiation Oncology at the University of Michigan, Ann Arbor, told Oncology Times the survey demonstrates the need for significantly more outreach and education efforts toward patients.
“Sadly, fears and misconceptions about radiation and its effects are common in our society. Many of us were taught from childhood that radiation is something to avoid, the byproduct of atomic bombs, and the cause of cancer. We need to educate patients about how we now have the technology to harness radiation in ways that make it a very safe and effective treatment for cancer,” she stated.
Oncologists are usually doing their best to communicate clearly about a whole host of issues with their patients, she added, including their fears.
“If a patient suggests that she is scared, I suspect her physician would immediately try to reassure her. But sometimes, it may not even occur to a physician who is so familiar with the promise of radiation therapy—we might forget sometimes that the whole concept of voluntarily receiving radiation can seem absolutely terrifying to a patient at first thought.”
Jagsi also said there is much research ongoing about the best ways to communicate with patients and expand their access to the information necessary to make decisions that align with their own values and preferences.
“Many institutions employ nurse navigators, direct patients to websites, or provide other types of decision aids,” she explained, adding, “This study underscores the importance of ensuring that content of decision aids specifically addresses fears of radiation.”
Kurt Samson is a contributing writer.