Posted by I wrote recently about my top takeaways from attending the virtual 2020 San Antonio Breast Cancer Symposium.
There was another study presented at SABCS that I’m covering separately here because the topic it speaks to is so important and because its findings were so startling.
The study, presented by Dr. Reshma Jagsi from the University of Michigan, compared what patients said about the side effects they were experiencing from radiation treatment with what their doctors reported.
The study and what it found
The study participants were breast cancer patients who were receiving radiation treatment after lumpectomy.
Both the patients and their physicians were asked to complete questionnaires after each treatment detailing symptoms they were experiencing. Roughly 9,900 patients participated.
Here’s what the study found:
- For those patients who reported moderate to severe pain (ranging from 4 to 10 on a 1-10 scale): their physicians, about 30% of the time, reported that the patients had experienced pain at only 1 on the scale or no pain at all.
- For patients who said they were experiencing itching of the breast often or all the time: the doctors, on about 36% of their responses, said their patients were experiencing no itching at all.
- For patients who reported they were experiencing swelling of the breast often or all the time: the physicians, on 51% of their responses, said their patients were experiencing no swelling at all.
- And for patients who reported they were experiencing significant fatigue most of the time or always: their physicians, about 19% of the time, said their patients were experiencing no fatigue at all.
In addition, the study found that this under-recognition of symptoms occurred more often in certain groups of patients, in particular those who were:
- younger (less than 50 years old) or
- “Black or other race”
Discussion and reactions
What was so striking about this study’s findings was not that there were differences in what patients and physicians reported, but the magnitude of the differences, with patients frequently reporting very significant symptoms while their doctors said these same symptoms were nonexistent or very minor.
Also demanding attention were the age- and race-based disparities in under-recognition of symptoms.
During the question and answer period, it was asked whether patients may be more comfortable reporting side effects on questionnaires, rather than “disappointing” their doctors with “complaints”.
Dr. Jagsi replied that she absolutely thinks that’s the case, saying “we need to encourage patients that, when we tell them certain side effects are expected, it doesn’t mean they shouldn’t tell us if they’re bothered by those side effects.” She stressed that doctors need to emphasize to patients that they want to know about any side effects that they’re experiencing and that there are things they can do to help support them through the experience.
Dr. Virginia Kaklamani, MD, Co-Director of SABCS 2020, was quoted in an article about the study in MedPage Today, saying “We need to do a better job, that’s really what it is. We need to conduct studies where patient-reported outcomes are being reported, and we need to listen more to our patients.”
Implications of the findings
This is not the first study that has found major differences in reporting of cancer treatment side effects between patients and their doctors. For example, Dr. Jagsi cited in her presentation a study published in 2020 on radiation techniques for cervical and endometrial cancer that had found similar discrepancies.
Under-recognition of treatment side effects impacts patients in at least two major ways. The first, of course, is ensuring they receive quality care including appropriate management of symptoms and side effects while undergoing treatment.
Directly related to that, getting a clear picture of individuals’ experiences with side effects, which can differ across populations, is an important part of addressing cancer health care disparities, a topic that I’ve written about in a recent post.
In addition, the impact on clinical trials in potentially very significant. Side effects for investigational treatments must be reported accurately so there is a clear picture of the benefits and risks of treatments being studied. Therefore, the findings also underscore the importance of collecting patient-reported outcomes in clinical trials rather than relying solely on what physicians report.
Resources
Patient advocate Martha Carlson has written an article in Cure Today with some excellent tips on talking to your doctor about cancer treatment side effects.
Another great resource on this issue is the website Breastcancer.org. Tips for Communicating With Your Doctor includes suggestions and questions to ask when talking with your doctors and nurses about pain and other side effects. Treatment Side Effects provides a helpful reference list of possible side effects of breast cancer treatment and ways to manage them.
Related Posts
Highlights From the San Antonio Breast Cancer Symposium 2020
Ending Breast Cancer Disparities
Image Credit: National Cancer Institute via Unsplash
After 20 Years 
Excellent article that begs the important questions: are doctors not listening? Or not believing? Or are patients reluctant to even tell their docs about side effects?
Years ago, as a hospital employee, I was invited along with my colleagues to tour the brand new Cancer Centre on our campus just before its public Open House. We toured the impressive state-of-the-art building and all the latest technology of the diagnostic and treatment departments.
In the radiation wing, I asked the tech staff leading our tour if this new radiation equipment would now help reduce the very painful radiation burns and weeping blisters that I’d witnessed firsthand in a dear friend over five difficult years of metastatic cancer treatments. “Oh honey,” I was assured, “We prefer not to call them ‘burns’ anymore. Now we refer to this side effect as just ‘skin irritation’.
Do people actually think that if they don’t talk about side effects, then they’re just not happening?
Thanks, Carolyn. I guess it seems pretty likely that all of these issues come into play at various times. Some of us may be afraid of “disappointing” the doctor or seeming to “complain”. Others of us may be afraid that we won’t be believed or won’t be taken seriously. If the institution downplays problems by actually changing the words used–as in the incident you experienced–that makes it even harder for patients to talk about what is going on.
And I especially wonder about the listening skills of some medical professionals. Ideally they would know about the difficulties patients may have in communicating about side effects and how to make them comfortable talking about these problems.
Hi Lisa,
Maybe it’s my imagination, but it seems like there are a lot of studies out there indicating doctors are not listening as well as they should be. This particular study is troubling because as you point out, the discrepancies between what patients reported and what doctors reported were huge. Unacceptable. I say, unethical as well. I wonder if the same thing happens when men report such things regarding radiation (or whatever) experiences. Are doctors doing a better job of listening to men?
Thanks for the post.
Hi Nancy. I think there have been lots of other studies but this one was really striking. Major discrepancies as much as a third of the time. I wouldn’t be at all surprised if this happens more with women than with men. And this demands a response, whether that means communication skills training, diversity training and/or other measures, to ensure this stops happening.