Although about 1 in 8 men in the U.S. will be diagnosed with prostate cancer during their lifetime, only about 1 in 44 will die from it. Most men diagnosed with prostate cancer die from other causes, especially those with a low-risk prostate cancer that usually grows so slowly it isn’t life-threatening.
However, until about a decade ago, most men diagnosed with low-risk prostate cancer were immediately treated with surgery or radiation. Although both can cure the cancer, they can also have serious, life-changing complications, including urinary incontinence and erectile dysfunction.
I am a family physician and researcher studying how patient-physician relationships and decision-making processes affect prostate cancer screening and treatment. In our recently published research, my colleagues and I found that men are increasingly opting against immediate treatment. Instead, they are choosing a more conservative approach known as active surveillance: keeping a close eye on the cancer and holding off on treatment until there are signs of progression.
Prostate cancer screening trouble
Prostate cancer screening is controversial because it often leads to overdiagnosis and overtreatment of cancers that would have otherwise been harmless if left undetected and untreated.
Screening for prostate cancer typically uses a blood test that measures levels of a protein that prostate cells produce called prostate specific antigen, or PSA. Elevated PSA levels may indicate the presence of prostate cancer, but not all cases are aggressive or life-threatening. And PSA levels can also be elevated for reasons other than prostate cancer, like an enlarged prostate gland due to aging.
Due to widespread PSA screening in the U.S., over half of prostate cancers detected through screening are low-risk. Concerns about overdiagnosis and overtreatment of low-risk cancers are the main reasons why screening is not recommended unless patients still want to be screened after discussing the pros and cons with their doctor.
What is active surveillance?
Active surveillance is a safe and effective way to manage low-risk prostate cancer by limiting treatments such as surgery or radiation only to cancers that are growing or becoming more aggressive. It involves monitoring tumors through regular checkups and tests.
Active surveillance is different from “watchful waiting,” another conservative strategy with a less intense type of follow-up that includes fewer tests and only relieves symptoms. In contrast, active surveillance involves more rigorous monitoring, with more tests to keep a close eye on cancer with the intention to cure if needed.
Active surveillance allows patients to delay or avoid invasive treatments and their associated side effects. It aims to balance keeping a close watch on the cancer while avoiding treatments unless they are truly needed.
All leading medical groups recommend active surveillance as the preferred approach to caring for men diagnosed with low-risk prostate cancer. However, until recently, the number of patients who opt for active surveillance in the U.S. has been low, ranging from under 15% in 2010 to about 40% in 2015. The specific reasons why active surveillance is underutilized in the U.S. are not well understood.
Facilitators and barriers to active surveillance
What factors influence treatment decisions? To answer this question, my team and I surveyed 1,341 white and 347 Black men with newly diagnosed low-risk prostate cancer from 2014 to 2017. We recruited participants from two cancer registries in metropolitan Detroit and the state of Georgia, regions with large Black populations.
Overall, more than half of the men opted for active surveillance. This was much higher than a similar study our team conducted nearly a decade ago, which found that only 10% of men chose active surveillance.
Increased uptake of active surveillance is good news, but it is not where it needs to be. The U.S. is still lagging behind many European countries, such as Sweden, where over 80% of patients diagnosed with low-risk prostate cancer select active surveillance.
To figure out what influenced patients to choose active surveillance, we decided to ask them directly.
A urologist’s recommendation had the strongest effect: Nearly 85% of patients who chose active surveillance stated that their urologist recommended it. Other factors included a shared patient-physician treatment decision and greater knowledge about prostate cancer. Interestingly, participants living in metro Detroit were more likely to choose active surveillance than those living in Georgia.
Conversely, men were less likely to try active surveillance if they had a strong desire to achieve a cure, expected to live longer with treatment or perceived their diagnosis of low-risk cancer was more serious. Almost three-quarters of patients who chose immediate treatment expected to live at least five years longer than they otherwise would without treatment, which is unrealistic and not based on existing evidence.
Misperceptions, unrealistic treatment expectations and biases may lead patients to choose unnecessarily aggressive treatment, suffering its harms with no survival benefit and potentially regretting their decision later.
Racial and geographic differences
We also found racial and geographic differences in the rate of active surveillance adoption.
On average, Black patients had a higher risk of developing and dying from prostate cancer compared with white patients. Additionally, as data supporting the use of active surveillance has been predominantly based on white men, the risks and benefits of active surveillance in Black patients are more controversial. Indeed, our study found 51% of Black patients chose active surveillance compared with 61% of white patients.
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Notably, Black men reported receiving fewer active surveillance recommendations from urologists and were less engaged in shared decision-making with their doctors compared with white men. This racial difference in active surveillance rates is no longer significant after accounting for urologist recommendations, decision-making style and other factors.
But geographic differences persisted: Patients living in Detroit were more likely to undergo active surveillance than those living in Georgia. This likely reflects to some degree the entrenched care patterns of some urologists. Some studies have found that the longer a urologist was in practice, the less likely they were to recommended active surveillance to their patients.
Encouraging active surveillance
Our findings are encouraging in that they show active surveillance has become more acceptable to both patients and urologists over the past decade. However, our results also suggest that greater physician engagement and better patient education can support increased adoption of active surveillance.
For example, when physicians appropriately describe low-risk prostate cancer as small or not aggressive, coupled with a favorable prognosis, this can give patients a sense of relief. Patients in turn feel more comfortable with undergoing active surveillance.
Conversely, a patient’s misperception of how serious their cancer is may lead to unnecessary treatment. Physicians can reassure patients that active surveillance is a safe and preferred alternative. They can also explain that aggressive treatments don’t improve survival for most low-risk patients and can cause significant long-term side effects.
More shared treatment decision-making involving patients and their physicians can improve the likelihood of choosing active surveillance compared with patients who make decisions on their own.
