Patient Toxicity and QOL Concerns Must Be Considered in Breast Cancer Treatment Decision-Making

Jane L. Meisel, MD, discusses the importance of prioritizing patients’ toxicity concerns and quality of life in the management of breast cancer.

Jane L. Meisel, MD

Jane L. Meisel, MD

Consideration of treatment-related toxicities and their impact on quality of life (QOL) is critical when choosing a therapeutic approach for patients with estrogen receptor (ER)–positive, HER2-negative metastatic breast cancer, according to Jane L. Meisel, MD. She added that providers must ensure patients feel comfortable communicating toxicities of concern and do not hide or minimize adverse effects (AEs) they experience for fear of negative provider perceptions.

Meisel and colleagues surveyed patients in this population to evaluate their perspective on the impact of treatment-related toxicities on QOL and the accuracy of toxicity reporting in metastatic breast cancer. Results from the 55-question, online ESR1 QUAlity of Life Survey 3, that were presented at the 2023 San Antonio Breast Cancer Symposium, showed that approximately 68% of patients considered QOL to be an important or very important factor in treatment decision-making, with 20% of patients reporting poor or very poor QOL. The most common AEs reported as negatively impacting QOL were sexual dysfunction (45%), joint pain (38%), vaginal atrophy/dryness (36%), fatigue (33%), bone pain (31%), and hair loss (26%). Notably, 46% of patients reported regretting taking medication due to AEs.

The survey also revealed that 62% of patients reported minimizing AEs in discussions with their oncologist. The top reasons for doing so included concerns of being seen as a complainer (70%), or fear of a dose reduction (66%), being taken off a drug (65%), or being taken off of a trial (47%). Moreover, 47% of patients did not even report certain AEs, and top reasons included being viewed as a complainer (63%), fear of being taken off the drug (57%) or experiencing reduced efficacy with a potential dose reduction (51%).

“This [research reminds us of] what should be innate [knowledge] in that QOL matters so much—especially when you’re dealing with an incurable cancer,” said Meisel, who is an associate professor in the Department of Hematology and Medical Oncology and an associate professor in the Department of Gynecology and Obstetrics at Emory University School of Medicine, Atlanta, Georgia. “As oncologists, we have to create environments where patients feel comfortable telling us how they really feel, because it’s the only way we can help them.”

In an interview with OncLive®, Meisel expanded on common patient-reported AEs that impact their QOL and the importance of considering patients’ prioritization of QOL and accompanying toxicity concerns when formulating care plans. She also emphasized the need for comprehensive communication and management strategies that ameliorate patients’ potential discomfort in discussing AEs with their providers.

In another interview, Meisel discussed research on patient-reported gaps in patient-provider communication regarding treatment-related toxicities in metastatic breast cancer.

OncLive: What was the rationale for evaluating the impact of treatment-related toxicities on decision-making and QOL in metastatic breast cancer? How was the survey designed and conducted?

Meisel: The idea behind this [research] was that AEs associated with cancer treatments are sometimes underreported in clinical trials. In conversations and research among patient advocates, and [according to] their perceptions, AEs can have a negative impact on QOL. QOL can also influence patients’ treatment decisions. However, we also don’t always know enough about how much AEs are impacting treatment decisions, or how willing and comfortable patients feel talking to their providers about this topic. We wanted to explore this in a diverse group of patients with metastatic breast cancer. That led to the development of a survey to look at this question. We sent this out to patients in different ways, [including] contacting some of the patient advocates we worked with to put this together. [We used] Facebook and Twitter and [leveraged] several other groups to allow for a diverse panel of patients answering the questions.

What kinds of questions were the participants asked in the survey?

We asked basic demographic questions, [such as] age, menopausal status, [whether patients lived in] urban or rural [areas], what their income was, and then a bit about schooling. Then we asked a lot of questions about treatments, [including] how many therapies they had received so far, if they were on endocrine therapy, if they [had] ER-positive [disease, and whether they were currently receiving] chemotherapy or a targeted therapy. We also asked a lot of questions about QOL and toxicity, [such as] AEs patients were most worried about and what AEs had impacted them the most, which are 2 slightly different questions. We asked whether patients had ever minimized or not reported AEs to their providers for any reason. We asked a lot about QOL and what AEs had impacted their QOL the most. We also asked about decisional regret, [specifically] whether patients have ever regretted taking medication because of AEs.

Could you briefly describe the baseline characteristics of patients who completed the survey?

[We had] an interesting patient population. Two-thirds of the patients were between the ages of 40 and 60 years, [19%] were under 40 years of age, and approximately 20% were over 60 years. Approximately one-third [34.3%] were premenopausal, and [38.5%] were postmenopausal; the rest were perimenopausal or uncertain. Just over 50% lived in urban areas, whereas the rest resided in suburban and rural areas. The majority of patients had household incomes between $25,000 and $100,000 per year. [In total, 26.8%] of patients had completed high school, [71%] had completed college, and 15% had a higher-level degree. [Additionally], 48.4% of patients were Hispanic or Latino, 44.1% were White, and 4.2% were Black. I wish that we had been able to get more Black participants, as I think that would have made it an even more diverse representation of patients. We were [still] glad to get such a large Hispanic and Latino presence answering these questions, and saw a fair amount of diversity with regard to other demographics.

What were the most common breast cancer treatments that these patients received?

[As I said, we] asked about what [patients] were currently [being treated with], and how many treatments they had received. [A total of] 36% [of patients] were only on their second line of therapy; [that is] relatively treatment naive, as far as metastatic breast cancer goes. Approximately half of patients were on their third line or higher. Approximately 70% of patients were on endocrine therapy with or without targeted therapies, 11% were receiving chemotherapy, 8% received antibody-drug conjugates, and 9% said they were receiving other drugs.

What AEs did patients identify as having the greatest impact on their QOL?

One of the things that came out was that approximately 70% of patients considered QOL to be an extremely important consideration when making treatment decisions. This highlights the need to think about how often the drug is dosed, if its oral or intravenous, what the most common AEs are, and how [the treatment is] going to impact their daily life [when] we’re presenting options to patients. [We need to] have a conversation with patients about which AEs matter to them the most so that we can choose treatments that ideally [are not associated with] those. They said that the most common AEs that negatively impacted QOL were sexual dysfunction, joint pain, and vaginal dryness.

It’s important to note that this patient population was mostly treated with endocrine therapy, so these are common AEs associated with endocrine therapy. If we had had a population that was mostly on chemotherapy, we might have had a different list of common AEs that were impacting QOL. It’s [still] important to notice this, because many people think of endocrine therapy as being no big deal. In fact, things like sexual dysfunction and joint pain can really impact people every day and in negative ways. Fatigue, bone pain, and hair loss were other AEs that bothered patients a lot. They noticed that these AEs had also impacted other areas of their life, [such as] making them more anxious, impacting their career, or impacting their marriage. This [information] sometimes [is not shared] in a busy clinic visit but can be truly impactful for most patients’ lives when they’re not in your office. It’s important for providers and provider teams to think about this. I had mentioned decisional regret as being something that we explored. It’s important to note that 46% of patients did report that they have regretted taking a cancer medication in their lives because of an AE.

How comfortable were patients discussing AEs with their providers, and what might be done to facilitate a more honest exchange in clinical practice?

Some other results that are interesting and important to highlight are what the patient said about how comfortable they felt talking to their teams about AEs. This also impacts how we as service providers should consider our visits and how we should think about making ourselves approachable. Approximately 60% of patients reported that they minimized AEs in discussions with their teams. In terms of why they did this, they said they didn’t want to feel like a complainer, they were worried about their doctor dose-reducing them without them wanting to be dose reduced, and they’re worried about being taken off the drug or taken off a clinical trial in some instances. It’s important for patients to know, and sometimes [for us to] explicitly say, [that they’re] not complaining if [they] report AEs. We want to know how they’re feeling with the drug, and [we need to remind them that] we’ll never dose reduce or take them off a drug without their consent, unless we really feel it’s unsafe for [them]. It will always be a conversation.

What are the implications of this research for patient care in breast cancer going forward?

[This research] does bring to light the importance of talking about AEs and of doing everything that we can to minimize them. Particularly when it comes to the sexual AEs that we uncovered in this patient population that’s mostly treated with endocrine therapy, things like vaginal dryness, joint pain, and sexual dysfunction were impacting QOL quite significantly. We don’t think about those AEs as often as we consider [events] like pneumonitis or blood clots or neuropathy, but they can be very impactful. There are ways to get around those AEs and help people feel better. It’s important for us to both ask about those things so that patients can report them to us more, but also to think creatively [when managing them.] Sometimes that involves bringing in supportive care colleagues or even a gynecologist to think about the ways we can help patients through these AEs so that they can stay on treatment and keep enjoying good QOL.

As far as selecting a treatment, patients are always more invested in continuing treatment when they’ve had a hand in making that choice. When making a treatment change, it’s important to say what we would do as the oncologist [while reminding patients that] there are [other options], if there are multiple choices. [We need to tell them] what the pros and cons of all of these [options are] so that they can say [what factors are] most important to them. Then, [you can] make a choice together.


Meisel J, Shanahan, K, Pluard T, et al. Minimization of treatment toxicity/side effects and their impact on quality of life (QoL) in patients (pts) with ER+/HER2- metastatic breast cancer (mBC). Abstract presented at: 2023 San Antonio Breast Cancer Symposium; December 5-9, 2023; San Antonio, TX. Abstract PO5-12-06.

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