It’s common for doctors to fail to understand the severity of radiation therapy side effects in women treated with radiation after lumpectomy, especially younger women and Black women, according to a study.
The research was presented on Dec. 10, 2020, at the 2020 San Antonio Breast Cancer Symposium. Read the abstract of “Identifying patients whose symptoms are under-recognized during breast radiotherapy: Comparison of patient and physician reports of toxicity in a multicenter cohort.”
Radiation therapy after lumpectomy can cause a number of side effects, including:
- skin changes in the treated area, such as redness, burning, pain, peeling, itching, or darkening of the skin
- swelling in the breast
When you start radiation treatments, your doctor will likely give you information about how to manage the skin side effects, which are the most common. Still, it’s important to tell your doctor about any and all side effects you’re having — and how severe they are — so you can get the help you need.
The study included 9,941 women who had radiation therapy after lumpectomy at one of 29 practices in Michigan. The women filled out at least one questionnaire about outcomes during radiation treatment.
The researchers compared the patient-reported outcomes to the doctors’ assessments of the patients’ side effects for four symptoms:
Doctors grade symptoms from 0 to 5 using a standardized tool called the Common Terminology Criteria for Adverse Events. Grade 0 means a person does not have the symptom. Grade 5 means a person died from the symptom.
Based on the patient reports, a woman was considered to have a substantial symptom if she reported:
- having moderate or severe pain (4 or higher on a 10-point scale)
- being bothered often or all the time by itching or swelling
- having significant fatigue most of the time or always
Doctors were considered to not understand the severity of pain when women reported moderate pain (4 to 6 on a 10-point scale) and doctors graded pain as 0, or when women reported severe pain (7 or higher on a 10-point scale) and doctors graded it as 1 or less.
Similarly, doctors were considered to not understand the severity of itching or swelling if women said they were bothered often or all the time by those side effects and doctors graded the symptoms as 0.
Doctors were considered to not understand the severity of fatigue if women said they were significantly fatigued always or most of the time and doctors graded the symptom as 0.
- 34.5% of the women reported moderate or severe pain
- 30.6% of the women reported often being bothered by itching
- 23.9% of the women reported often being bothered by swelling
- 24.9% of the women reported significant fatigue most of the time
The researchers found that doctors didn’t understand the severity of at least one of the symptoms studied at least once during the course of radiation treatment for 53.2% of the women who reported at least one substantial symptom. In other words, more than half of the women with a substantial symptom had the severity of at least one symptom misunderstood by their doctors.
Several factors, including age, race, and treatment regimen, were linked to having the severity of a symptom misunderstood.
Compared to women age 60 to 69, women younger than 50 were 35% more likely and women age 50 to 59 were 21% more likely to have the severity of their symptom misunderstood.
Compared to white women, Black women were 92% more likely and women of races other than Black or Asian were 82% more likely to have the severity of their symptom misunderstood.
Other factors linked to doctors misunderstanding the severity of a symptom included not being treated with radiation to the supraclavicular field (the area above the collar bone) and being treated with an older, longer radiation schedule of 5 to 7 weeks compared to a newer, shorter schedule of 3 to 5 weeks (called a hypofractionated schedule).
“It is possible that there is a misconception among medical professionals about the pain tolerance of patients based on age and race,” said study author Reshma Jagsi, M.D., Newman Family Professor and deputy chair of the department of radiation oncology and director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan. “Our study identifies some concerning patterns that need to be evaluated in future research, along with opportunities for intervention to improve the quality and equity of cancer care delivery.
“Improving symptom detection is a potential way to reduce disparities in cancer treatment experiences and outcomes, at least in the setting of breast radiation therapy,” she added.
While this study looked at how well doctors understood the severity of side effects caused by radiation therapy after lumpectomy, Jagsi told Breastcancer.org that the results are likely similar for other breast cancer treatments. She urged patients to tell their doctors about any and all side effects they’re experiencing.
“My experience with patients with breast cancer is that they are warriors,” she said. “They will suffer in silence to take care of everyone else around them. What I would say is please don’t suffer in silence. Please be sure to speak up and let your physician know if you’re experiencing symptoms like pain or itching or swelling or tiredness or really anything else that’s bothering you. You may know that these are expected side effects of treatment and so you may feel like it’s a hassle, but please know that you’re not bothering your physician by telling us that you’re having symptoms. There are things that we as physicians can recommend to help mitigate side effects and the impact on your quality of life during treatment, if we know that you’re bothered by these symptoms.”
So if you’re experiencing any side effects, be sure to tell your doctor about your symptoms and how they’re affecting your quality of life. Make sure your doctor understands. You also should ask about any and all recommended steps to take to ease the side effects.
For more information on specific side effects related to breast cancer treatment, including how side effects can be managed, visit the Breastcancer.org Treatment Side Effects pages.
Written by: Jamie DePolo, senior editor
Reviewed by: Brian Wojciechowski, M.D., medical adviser
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