Radiation" is not a word obviously associated with healing and medicine but instead often raises specters of nuclear weapons, power plant disasters, and human injury, according to experts who spoke with Medscape Medical Newshere at the American Society for Radiation Oncology (ASTRO) 2017 Annual Meeting.
As a result, the specialty of radiation oncology needs to step into this information breach and educate patients, the public, and, in a different way, other medical specialties, said commentators.
Patients' attitudes were a focus at a meeting press conference this week, where Narek Shaverdian, MD, from the University of California Los Angeles presented the results of a survey of 327 patients with breast cancer at their center who received radiation therapy.
Little is known about what patients think about the radiation therapy experience, he said.
The survey revealed that nearly all (94%) of the women were initially fearful of receiving radiation and half (47%) had heard or read frightening stories of serious side effects from the treatment, reported Dr Shaverdian.
The most common initial fears related to damage to internal organs (40%), skin burning (24%), and becoming radioactive (7%).
David Beyer, MD, board chair of ASTRO, who attended the press conference as an observer, was not surprised.
"Most cancer patients have three thoughts in mind when you say radiation: Chernobyl; they think it causes cancer; and they remember an elderly aunt who had horrible radiation burns decades ago," Dr Beyer told Medscape Medical News.
Patients with cancer are mostly an "older population" and thus can recall a previous era in radiation oncology when adverse events were more common, explained Dr Beyer, who is from the Cancer Centers of Northern Arizona in Sedona. He was not asked for comment but approached Medscape Medical News because he feels so strongly about the subject.
In breast cancer, the evolution of treatment technology and provider skill means that 90% to 95% of patients now report a "good" cosmetic outcome, he said, not citing any statistical source.
"It's not uncommon to see a woman on follow-up [for breast cancer] and have to consult my notes to see which side was treated," said Dr Beyer.
Paul Harari, MD, from the Carbone Cancer Center at the University of Wisconsin, Madison, and president-elect of ASTRO, echoed some of these comments.
"The word 'radiation' can invoke fear among patients and providers based on misconceptions about toxicity," he told Medscape Medical News. He also acknowledged that the term "may conjure up worrisome images," including terrorism.
The specialty needs to get the word out about sophistication of contemporary radiation oncology practice, said Dr Harari.
"A very important effort for the field of radiation oncology is to highlight the tremendous power and precision of radiation in modern cancer treatment," he said.
To that end, ASTRO's Board of Directors has recently endorsed an "elevate the profile" initiative. However, "we are only just beginning to develop tactics and tangibles," said Dr Harari.
A higher profile might help with patients. The breast cancer patient survey from Dr Shaverdian revealed that 68% of respondents had, at the time of diagnosis, "little or no prior knowledge of radiation therapy."
Doctors also need education, said Dr Shaverdian.
"Breast surgeons are influenced by fears and misconceptions of radiation therapy," he said while discussing why radiation therapy is not more widely used in high-risk patients with breast cancer after mastectomy, despite recommendations to do so.
Dr Harari hinted at an underlying problem. "Beyond our specialty, there is a relatively limited understanding and appreciation of this remarkably effective modality of cancer treatment," he said.
The new survey indicated that patients were not scarred by the experience. They completed the survey a median of 31 months (range, 6 to 61 months) after completing radiation therapy
Only eight women (3%) found the negative stories they previously read about radiation therapy to be true, and six women (2%) found the negative stories from family and friends to be true.
On the other hand, 90% reported that the actual experience to be "less scary" than anticipated.
With regard to short-term side effects, 83% reported the overall events to be better than or as expected. And 75%, 61%, and 78% of patients reported pain, skin changes, and fatigue, respectively, to be less than or as expected.
With regard to long-term side effects, 84% reported that these were better than or as expected. And 79%, 73%, and 70% found breast-related pain, size changes, and textural changes, respectively, to be less than or as expected.
In terms of patients' disease stage, 18% had ductal carcinoma in situ; 38% had stage I; 34%, stage II; and 9%, stage III. Most (82%) underwent breast-conserving surgery. Among the survey respondents, radiation therapy was delivered as standard whole-breast (with or without regional nodal coverage), hypofractionated whole-breast, postmastectomy, and partial breast.
Brian Kavanagh, MD, MPH, from the University of Colorado, Denver, and the outgoing ASTRO president, wondered whether the study results about patients' fears reflected the fact that any cancer diagnosis is a "frightening prospect."
Dr Kavanagh moderated the press conference at which Dr Shaverdian spoke.
"It's always a part of the conversation," said Dr Kavanagh, who was referring to patient fear and anxiety expressed during an office/clinic visit.
He believes that patients who are not tech savvy (and cannot access online breast cancer information) or who lack financial resources are probably more likely to be fearful.
"I hope most are not incapacitated by fear. I don't see that personally," he said about patients in general.
Dr Kavanagh said the important thing is for radiation oncologists to address fears and misconceptions. There is also a built-in tool that enables clinicians to do so. The informed consent process before treatment covers potential side effects, he said, which will address many patients' lingering and perhaps unspoken concerns.
Study author Dr Shaverdian offered one other insight. "We tried to be proactive in our clinic. We try to explain radiation therapy in simple terms — 'It's like an x-ray, but not to take a picture, but to actually treat.'"
One study author disclosed a financial relationship with Accuray. Dr Beyer and Dr Harari have disclosed no relevant financial relationships.
American Society for Radiation Oncology (ASTRO) 2017 Annual Meeting. Abstract 85. Presented September 25, 2017.
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