Nearly 85% of patients surveyed 6 or more months after completing radiotherapy as part of their treatment for breast cancer reported the side effects were not as bad as they had feared or expected. Approximately 92% of the 269 patients treated with breast conservation and 81% of the 58 patients treated with mastectomy agreed with the statement, “If future patients knew the real truth about radiotherapy, they would be less scared about treatment.”
The survey results were published by Narek Shaverdian, MD, a radiation oncology resident at the David Geffen School of Medicine at the University of California, Los Angeles (UCLA), and colleagues in Cancer 1 and covered by health and national media. As reported in HealthDay,2 the study’s corresponding author, Susan A. McCloskey, MD, MSHS, said she hoped the findings offer patients “a better idea of the breast radiation experience when making treatment decisions.” Dr. McCloskey is Assistant Professor of Radiation Oncology at UCLA.
“Day in and day out in clinical practice, we see patients with these fears and misinformation, and there is a general lack of knowledge among patients and even among many physicians who have no experience with radiation therapy,” Dr. McCloskey said in an interview with The ASCO Post.
Free of Disease Recurrence
“Given the documented misconceptions and fears regarding breast radiotherapy, we sought to explore the treatment experience from the patient’s perspective to better inform future patients and providers,” the authors explained in their report. The study involved 327 patients with nonmetastatic, noninflammatory invasive, or preinvasive breast cancer; 82% were treated for an invasive breast cancer and 83% were treated with breast-conserving therapy. Patients were free of disease recurrence at least 6 months out from the completion of radiotherapy.
Sometimes just the word ‘radiation’ itself sounds frightening.— Susan A. McCloskey, MD, MSHS
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Most patients had stage I (39%) or stage II (34%) disease, but 18% had stage 0 disease (with all but 1 of 60 patients treated with breast-conservation therapy), and 9% had stage III disease (with 25 of 30 patients treated with mastectomy). The median age was 59 years (range, 28–89), but it was 61 years for patients treated with breast-conservation therapy vs 50 years for patients treated with mastectomy. Most patients were white (76%) vs 11% Asian American, 10% Latino, and 3% African American.
“Approximately 42% of patients (138 patients) underwent standard fractionated whole-breast irradiation, 28% (92 patients) underwent hypofractionated whole-breast irradiation, 22% (71 patients) underwent comprehensive regional lymph node irradiation, and 78% (254 patients) received a radiation boost,” the authors reported. “Approximately 37% of patients (120 patients) received chemotherapy, and 70% (230 patients) received adjuvant endocrine therapy.” Patients who had mastectomy were more likely to receive comprehensive regional lymph node irradiation and chemotherapy.
‘Less Scary’ Than Expected
“Approximately 85% of patients (281 patients) found their actual radiotherapy experience to be ‘less scary’ than originally expected,” the authors reported. “Approximately 4% of patients treated with breast conservation (10 patients) and 10% of patients treated with mastectomy (6 patients) found their overall radiotherapy experience to be harder than expected,” the authors continued.
A ranking of the most common initial fears about radiotherapy found “the number one fear was damage to normal organs. Number two was skin burns or reactions,” Dr. McCloskey explained.
“So many of our advances have been intended to address those specific things,” she said, but “many women just don’t realize how much technology has advanced, and we can use special techniques now for heart and lung avoidance that essentially negate that issue. Modern studies are showing well below a 1% chance of any lung or cardiac issues in the future,” Dr. McCloskey said. “Organ damage is a rarity, and that is definitely a change.”
Technologic advances have also greatly reduced skin reactions, Dr. McCloskey pointed out, noting that photographs seen on the Internet by patients may be from years ago and may not be representative of results from modern clinical practice.
Women who were treated with mastectomy (85% of whom underwent reconstruction) were more likely to report that skin changes following radiation therapy were greater than expected. “Downstream cosmesis is a big issue when we are integrating radiation and reconstruction. It is a complex discussion and a complex interplay involving oncologists, plastic surgeons, and patients when it comes to the issues of reconstruction, radiation, cosmesis, and what we should do,” Dr. McCloskey stated.
“One of the big issues with implant reconstruction is contracture, where there can be some tightening around the implant. That is where some of the longer-term cosmetic effects come in. We tend to see a bit more of that in the subset of patients who undergo reconstruction,” she noted. “In this study, the vast majority of women had modern breast conservation with a lumpectomy and radiation, and this subset did beautifully.”
The third-ranked fear was that “the patient would become radioactive from radiation therapy, and that is just incorrect,” Dr. McCloskey stressed, “but it is a common concern I am asked about.” Some patients expressed concerns about radiation increasing their risk of a secondary cancer. “That is a reality of radiation,” Dr. McCloskey acknowledged. “But it is an exceptionally rare phenomenon.”
“Sometimes just the word ‘radiation’ itself sounds frightening,” Dr. McCloskey said, noting that patients may have seen warnings about radiation in their dentists’ offices or elsewhere. “It has a lot of scary connotations, so it is not surprising that women come in with these fears and lack of knowledge, but we have an opportunity to rectify some of that.”
When Dr. McCloskey asks patients what they know about radiation, “it is so common for women to say, ‘I don’t know much, but I’m really nervous about it.’ Some of it is from that lack of knowledge or hearing stories from 20 or 30 years ago that aren’t the same experience as patients have today. That is why we wanted to quantify it with this study.”
Expectations of Pain
“Discussions around expectations of pain are also important. Women routinely reach out to the team and say, ‘I’ve had a sharp, shooting pain, and my cancer is back.’ So we need to educate patients and let them know that sometimes they will have subsequent pain,” Dr. McCloskey said.
“Breast pain after breast conservation has been found to be an important correlate of quality of life, and, importantly, the majority of patients treated with breast conservation in the current study noted less long-term pain than expected,” the study found. Women who had breast-conservation surgery were more likely to report that pain was less than expected than were women who had mastectomy.
“Within that mastectomy group, there are complex reconstruction issues. That can sometimes exacerbate the side effects,” Dr. McCloskey stated. “It is not necessarily pain but may be the result of a contracture issue with the reconstruction. Ongoing research is aimed at understanding this interplay between radiation and reconstruction.”
Importance of Timing
The median time interval between the end of radiotherapy and completing the study survey was 31 months, with a range of 6 to 61 months. Dr. McCloskey explained that the research team thought it important that patients have at least 6 months “to be able to reflect upon the experience, see that acute effects do peak and subside, and have enough time to develop some sort of aftereffect, even if it was cosmetic. That timing was important. There may be some variation between people who are 6 months and 2 years out, but in general, this was a relatively homogeneous subset thinking back about their experience,” she added.
“One of the reasons I think these long-term issues are important is women who are in the thick of it and going through their treatment are focused on cure and getting this behind them,” Dr. McCloskey said. “A conversation with a patient about cosmesis a year or so after treatment lets me know she is starting to see the experience in the rear-view mirror…. We intentionally did not enroll women who had developed recurrent disease, for example, because I do think their priorities are different.”
Seeing Patients at the Outset
“Trying to get newly diagnosed women to see a radiation oncologist at the outset is helpful,” Dr. McCloskey said. “We have a process here at UCLA where newly diagnosed women are seen in a multidisciplinary clinic setting, so they have the opportunity to meet a radiation oncologist before treatment decisions are made,” Dr. McCloskey explained. Patients who have been diagnosed meet sequentially with physicians representing surgery, medicine, radiation oncology, and plastic surgery, if needed.
“Our multidisciplinary setting has been a real eye-opener for me,” Dr. McCloskey said. “As a radiation oncologist, I typically saw patients only in the postsurgical setting. I had not met them at the outset. When we started to establish the multidisciplinary clinic, I, for the first time, was meeting women when they were making these complex decisions about mastectomy vs breast conservation.”
Dr. McCloskey said she is now an advocate of the multidisciplinary clinic setting “because I’ve seen it helped to have information come directly from a knowledgeable radiation oncologist to a patient. Surgeons tell me that often when they talk about radiation with a patient, and these fears come up, they may not have all the details they need to discuss it knowledgeably, and sometimes the patient is reluctant to make an appointment with a radiation oncologist.”
Rise in Mastectomy Rates
“Although breast-conservation therapy has been associated with an improved body image vs mastectomy and equivalent if not superior cancer control and survival outcomes, its use among eligible patients is on the decline, thereby motivating our interest to evaluate the radiotherapy experience from the patient’s perspective,” the study authors wrote. “Clearly, these data indicate that radiotherapy in the setting of breast conservation actually is a far superior treatment experience than is perceived by the public and should be appreciated by women weighing treatment options.”
Clearly, these data indicate that radiotherapy in the setting of breast conservation actually is a far superior treatment experience than is perceived by the public….— Susan A. McCloskey, MD, MSHS
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Dr. McCloskey told The ASCO Post that factors influencing the rise in mastectomy rates are multifactorial, “but I have been interested in exploring the variation from the oncology perspective, because I think, from the outset, these issues and fears about radiation prompt decision-making that may not be not fully informed.”
She noted that “all signs are pointing to the rise in mastectomy rates being a real trend. It is very interesting to think of that pendulum swinging back, because it was felt to be such an advance when we were able to prove the equivalence of breast conservation several years ago,” she said.
“I see newly diagnosed women every week in our multidisciplinary clinic, and it is not uncommon for their first inclination to be that they want both breasts removed. For all of us to be able to meet with them, in sequence, and really take the time to help them understand the implications of that—the pros and cons, the alternatives—has been of such value,” Dr. McCloskey said. “I tell women on a daily basis that they get to make the ultimate decision, and our job as physicians should be to ensure that decision is fully informed.”
From Women to Women
Dr. McCloskey reported she has received feedback about the study from colleagues and patients. “It was a rather simple study—intentionally so—and really came from the heart in terms of us wanting to get this information to women, and it has caught on. Multiple patients and colleagues from other disciplines have mentioned it to me,” she said.
Not only did the study “quantify the fears and the realities” about radiation therapy for breast cancer, but it also provided data to show that “women’s experiences have been better than they anticipated,” she said. “I get very enthusiastic in being able to dispel some of these rumors with information about modern breast irradiation and advances in technology. I see the fears allayed in front of my eyes every day.”
Patients talking about and sharing their own experiences can also be effective in dispelling fears. “I have had patients who have gone through the process talk directly to other women who are starting this journey,” Dr. McCloskey noted, “and I think that helps to get better information out.” ■
DISCLOSURE: Dr. McCloskey reported no conflicts of interest.
1. Shaverdian N, Wang X, Hegde JV, et al: The patient’s perspective on breast radiotherapy: Initial fears and expectations versus reality. Cancer 124:1673-1681, 2018.
A study examining the patient’s perspective on breast radiotherapy found that 68% of the patients surveyed responded that they had little or no prior knowledge of radiotherapy at the time of breast cancer diagnosis, making that an excellent time for physicians and other health-care professionals to ...