There are many stigmas surrounding active surveillance (AS) for patients with prostate cancer, primarily due to the notion that this type of care will lead to disease progression or inadequate treatment.
In an effort to de-stigmatize active surveillance, Behfar Ehdaie, MD, MPH, discusses ways in which patients can be their own advocates in choosing a treatment method as well as talking points clinicians can use when counseling their patients on the AS option. Ehdaie is a urological surgeon at Memorial Sloan Kettering Cancer Center, New York City, New York.
What are some of the stigmas associated with active surveillance from a physician’s perspective? From the patient’s point of view?
From the patient’s perspective, cancer is a call to action. In many cases, [for patients], the “C word” reminds family members, friends, [and] neighbors who have been diagnosed with cancer, whether it is prostate cancer or other cancers. These are usually combined with aggressive treatments. So, before any discussion with doctors, patients perceive that this cancer must be eliminated and must be treated aggressively. I think with that, after they first had a conversation with [their] As a post-diagnosis physician, the risk of disease progression to incurability is a major fear and concern for them.
From the point of view of physicians, I think we now realize that active surveillance of men with low risk prostate cancer and favorable intermediate risk prostate cancer is, in many cases, l preferred treatment option. And this was accepted by radiation oncologists and urologists in a recent article, surveying over 1,000 urologists and radiation oncologists.1 Over 70% believe active surveillance was the preferred treatment for men with cancer prostate cancer at low risk.
Having said that, there are concerns, I believe, that patients may be lost to follow-up. They fear missing out on important cancer, whether because of their concerns about the experience of their own pathologists, radiologists, [or] their electronic medical record system to be able to follow patients longitudinally to allow them to go back in time to see how tests have changed or PSA values ââhave changed.
I think, historically, we’ve attributed the barriers of active surveillance to the misalignment of physicians, so the incentives are misaligned between treatment and surveillance. Corn [based on] My personal belief and the research I have done, I think this is less likely to be a problem and I think it is by far the minority problem when it comes to the use of active surveillance. Otherwise, coming back to this survey of urologists and radiation oncologists, despite 70% of them stating that active surveillance is the preferred treatment option, a majority of these doctors also said that the reason why active surveillance is not used as the main management strategy is that patients will not accept it. So I think that’s where we see the biggest barrier.
How do the stigmas surrounding active surveillance affect the management of patients with prostate cancer?
The key to active surveillance is the acceptance between the patient’s family, the patient and the physician to monitor this cancer. And the stigma around cancer is that if left untreated it can spread and become incurable. Therefore, patients, family members, [and their] friends may revisit a management strategy that is not aggressive treatment from the start and see it as a lost opportunity to heal. This would obviously constitute an obstacle to the acceptance of active monitoring of patients as part of their management strategy.
What is the role of the urologist in the destigmatization of active surveillance?
I think this is the critical question. My research has focused on discussing active surveillance with patients in order to be able to reinforce the relevance of this management strategy in relation to the patients’ own biases for aggressive cancer treatment. In our research, we partnered with Harvard Business School, and in particular the negotiating team, that they came in and looked at our discussions with patients and determined that many of the things we were saying and how which we said were in fact preferably focused on surgery. and outreach. It is in this space that I believe physicians can make a major difference.
Our results reported in our study [which were] Posted in European urology in 2017 and profiled by The Wall Street Journal, focused on the fact that patient preferences are the driving force behind treatment decision making.2 So the first part is to understand what the patient’s preferences are and extend them beyond life and of death. Cancer often restricts the attention of patients and their families. And that includes what we know as doctors: quality of life, sexual function, urinary function, cost, ability to be seen and monitored, find cancer on time and treat, have a care team they can have. confidence. Incorporate these factors, combined with strategies, which include setting the default option as active surveillance when describing treatment options [and] provide context for this decision [are key]. For example, when we used to have these discussions with patients, we would say to them, âWe will see you in 6 months for your first follow-upâ, and that would be after a long discussion. [about] active surveillance. We learned that the immediate reaction of the patient or their family would be, âThis may take too long. Yes, because they are making a decision outside of the context of cancer care, we have that knowledge as opposed to the patients. It is our mistake not to be able to describe this. So we said, âBefore presenting the follow-up plan, we would discuss the background to the natural history of prostate cancer. For example, a patient would ask me, “Well, when is the next follow-up?” And I say, “Well, let’s talk about prostate cancer first.” We know that prostate cancer is a slow growing tumor. With studies in men diagnosed with prostate cancer in which their disease was managed expectantly. We expect changes in your prostate to occur 7-10 years after diagnosis. And with the PSA screening, we find these tumors 4-7 years earlier, so I’d be safe to say you come back to see me in 5 years, similar to the screening we do for colonoscopies after the polyps are discovered. However, I want to watch you closely. So, I want to see you again in 6 months. Now 6 months for a patient almost seems like a good deal and these factors are the background behind the discussions we have with patients.
Ultimately, [it is important to really allow] social proof to be part of our discussions. It is now known, for example, that at Memorial Sloan Kettering, 95% of men with low-risk prostate cancer choose active surveillance. It must be shared with the patients. The larger decision-making group would choose active surveillance. You are no different. So I say to patients, âNow 95% of men like you choose active surveillance. ” We [also] they must be given tools, because when patients leave the practice, they have conversations with neighbors, friends, [and] family, and they must be their own advocates. I leave them 3 important things to remember. First: No study has ever shown that active surveillance in low-risk men improves overall survival. Number 2: Prostate cancer treatments, including surgery and radiation therapy, are associated with significant side effects that will impact your quality of life. And 3: active surveillance does nothing. It is close monitoring. It is a treatment option. And with that, we finally set out to standardize the process.
Many men experience anxiety associated with this decision. Therefore, I have to make them realize that they are not alone. In fact I tell them at the very beginning [that] all men experience anxiety. All families are anxious. You are no different. It is therefore essential to combine all these elements in a standardized approach to discuss active surveillance and risk management. The last step is to discuss treatment options before the biopsy. Allowing active surveillance to be a choice that the patient can see, before their biopsy, on the horizon. When a discussion takes place after a diagnosis, patients ask me, “Is cancer low risk?” After being told it was cancer because they know that one option then would be to manage. It doesn’t have to be surgery or radiation therapy. Defining this stage, really focusing on those conversations, using the appropriate tools that we have learned from behavioral psychologists and that are used by negotiation specialists, is essential in medicine. [They] can be applied not only to the active surveillance of prostate cancer, but to the whole of medicine.
Is there anything else our audience should know about this topic in your opinion?
Number 1, I would say that we are currently expanding the role of active surveillance, expanding the pool of patients that we considered eligible in the past. Number 2, we’re learning better ways to keep patients under active surveillance. Essentially, the triggers for treatment are broadened and not as conservative. We use various forms of volume model for a biopsy, for example. Finally, I encourage your listeners to go and evaluate our study to really assess what we have developed as a standardized approach to systematically discuss the active surveillance of patients with newly diagnosed prostate cancer.
1. Kim SP, Gross CP, Nguyen PL, et al. Perceptions of active surveillance and treatment recommendations for low-risk prostate cancer: results of a national survey of radioconologists and urologists. Medical care. 2014; 52 (7): 579-85. doi: 10.1097 / MLR.00000000000000155
2.Ehdaie B, Assel M, Benfante N, et al. A systematic approach to discussing active surveillance with patients with low risk prostate cancer. Eur Urol. 2017; 71 (6): 866-871. doi: 10.1016 / j.eururo.2016.12.026