‘High likelihood’ breast cancer survivors have encountered misinformation

By: Josh Friedman

From: healio.com

Key takeaways:

• Approximately three-quarters of breast cancer survivors have encountered misinformation about risks for recurrence.
• Misinformation has not significantly impacted fear of recurrence or treatment adherence.

Supplements. Deodorants. Bra types?

Kaitlyn Lapen, MD, a radiation oncology resident in her last year of training at Memorial Sloan Kettering Cancer Center, has heard countless questions from women with breast cancer about various factors that may increase or reduce their risk of recurrence.

“They ask about things they hear on the news, from friends, online forums,” she told Healio.

Certain questions are grounded in science, such as those around diet and exercise. Some still catch Lapen off guard, though.

“Bra type, I don’t know where that myth came from,” she said. “There’s some thought that maybe if it compresses the chest in a certain way, maybe it can impact the lymphatic drainage, but there’s no evidence to support that.”

Breastcancer.org conducted a survey of nearly 1,000 breast cancer survivors and found more than 75% have encountered misinformation about recurrence risks.

Misinformation did not significantly impact fear of recurrence or treatment adherence, but the stark number of women who reported seeing misinformation should be a warning sign to clinicians.

“If you see a patient in clinic, there’s a high likelihood that they’ve been exposed to information about various factors that may falsely be believed to influence their risk of cancer progression or recurrence,” Lapen said. “It’s important to create an environment in which patients feel comfortable asking about those factors so that we can address misconceptions and provide the best possible education to our patients.”

‘It can be harmful’

Healio has previously reported on multiple studies regarding medical misinformation and disinformation.

A study examining cholesterol information on social media showed more than 40% of the top viewed videos on TikTok contained misinformation, and more than a third could potentially be viewed as harmful.

In a survey of more than 1,000 clinicians, 86% believed misinformation had worsened over the previous 5 years, and 61% said misinformation has influenced their patients.

A 2023 investigation found most patients who are exposed to misinformation believe some of it is true, according to study background.

This can cause mistrust in the health care system.

Another survey showed an 8% reduction since November 2021 in the proportion of people who believe science positively impacts society.

“When that misinformation starts to evolve into mistrust of physicians and the evidence-based treatment pathways we typically recommend, that’s when it can be harmful,” Lapen said.

Breastcancer.org conducted an online survey between July and August 2023 to evaluate misinformation among individuals diagnosed with breast cancer in the previous 10 years.

Overall, 997 participants (median age, 62 years; interquartile range, 53-69; 86% white) answered at least some questions.

Exposure to misinformation served as the primary endpoint. Impact of misinformation on fear of recurrence and treatment adherence served as secondary endpoints.

Misinformation rampant

Overall, 76% of respondents reported exposure to misinformation regarding cancer progression or recurrence.

More survivors heard misinformation about factors that could increase their risk for progression or recurrence (65%) than those exposed to factors that could decrease their risk (54%).

The most encountered misinformation factors thought to increase risk for progression or recurrence included sugar consumption (61%), deodorant (22%), vaccines (8%), cell phones (8%) and bra type (8%).

The most encountered misinformation factors believed to decrease risk for progression or recurrence included eating organic food (41%), taking oral vitamins and supplements (29%), eating an alkaline diet or drinking alkalized water (12%), receiving vitamin infusions (7%), and using cleanses (5%), essential oils (5%) and oxygen therapy (4%).

“We’ll have patients come in and they’ll be on a long list of different supplements,” Lapen said. “Even I get targeted ads — a multivitamin that costs $200 a month that will reduce your risk of cancer.”

Despite rampant misinformation, fear of recurrence and treatment adherence did not significantly differ between patients who encountered misinformation and those who did not.

“That was a little reassuring,” Lapen said. “We see all this misinformation, it’s good to see that it’s not really influencing patients’ fear or their treatment adherence.”

However, it still occurs.

Lapen has had patients challenge recommendations or insist on getting treatments they read celebrities received.

“It’s a very individualized thing in terms of their fear and how they process that information,” she said.

This makes communication critical.

“If patients are exposed to large amounts of information and we’re saying something that contraindicates what they’re being exposed to, that could potentially lead to mistrust,” Lapen said. “Distinguishing beliefs perpetuated by the media and society from what’s actually been sustained by evidence is important.”

Researchers acknowledged study limitations, including the survey being online only and not gathering data on where misinformation is coming from.

“Looking at where patients are getting their information, what sources they’re using, is also important,” Lapen said. “With ChatGPT and AI, something we’ve been trying to do is look at these sources and see whether they provide accurate information, as well. A lot can be done in understanding how patients receive and perceive information, to enhance communication with clinicians and patient education.”