With rising cancer rates among younger generations, education remains paramount in our efforts to catch cancer at an earlier, more treatable stage.
While increased awareness of the importance of routine screenings has had a positive impact on earlier diagnoses, education remains vital for patients throughout their journey, especially those with low-risk cancer. These patients can face the stigma and uncertainty of navigating their lives with cancers that are initially best served with close monitoring, as opposed to aggressive treatment.
Active surveillance is defined as close monitoring, which generally consists of routine appointments with healthcare providers to monitor low-risk cancer for signs of progression or change. This approach can be used for low-risk cancers across a variety of tumor types, such as prostate, kidney, and bladder cancer. While it is often the best approach for care, it can be challenging for some patients to accept.
Active surveillance as a powerful part of comprehensive cancer care
Our patients deserve ample time to receive, understand, and ask questions about any diagnosis. Our team is very empathetic to patients when they receive a diagnosis, including those diagnosed with low-risk prostate cancer. Given the likely recommendation of active surveillance, there are unique challenges in how we deliver on our patient centered goals.
With the many stigmas associated with prostate cancer, and cancer in general, patients have learned to be fearful of this diagnosis. It’s not uncommon that we hear the question, “What do you mean I don’t need treatment?” Our challenge is to help them navigate next steps and understand that in some circumstances, aggressive treatment is not necessary. These conversations are often the longest and most nuanced we have at our clinic.
It helps to reinforce that active surveillance does not mean ignoring the cancer. This approach includes further screening, close monitoring, and steps to ensure we are still able to provide meaningful treatments if the cancer changes. Active surveillance also allows patients to achieve their cancer goals while tailoring treatment to those situations where the risk of their cancer justifies it.
In the case of low-risk prostate cancer, active surveillance involves identifying a strategy of close monitoring with blood tests to check levels of prostate-specific antigen (PSA) and, potentially, additional biopsies, MRI scans, and occasionally genetic testing. Importantly, the approach includes understanding and planning for next steps in the event the cancer does eventually need more aggressive treatment.
It is a complex set of scenarios because there are risks associated with cancer treatment across the board. With surgery or radiation treatment, a patient with prostate cancer faces potential risks to their quality of life from the treatment itself. These include a risk of erectile dysfunction, urinary incontinence, and infertility. Ultimately the goal is to balance the risks and the benefits so that we can eliminate the risk of prostate cancer death without causing more non-cancer impacts than necessary.
Counter the stigma of receiving a low-risk cancer diagnosis
Despite our many years of experience and study confirming the safety of active surveillance, the stigma of a cancer diagnosis remains a strong driver for some patients inclined to pursue aggressive treatment. This has led some to suggest renaming low-risk prostate cancer by removing the word "cancer" entirely. While there's no consensus on the topic, there is a lot of debate about the weight and stigma of "cancer" in the context of a low-risk cancer diagnosis. Receiving a diagnosis makes it hard for a patient to reconcile not pursuing treatment immediately.
Changing the name could curb the real stigma associated with the word "cancer." However, there are many other considerations including the potential risk that patients may not maintain the diligent monitoring that is needed for active surveillance to be safe and effective. Additional concerns include what impact a name change could have on insurance policies where a cancer diagnosis is required.
Centering the patient
While we may not be able to reduce the stigma of receiving a diagnosis in the near future, we can commit to taking the time to actively partner with our patients from day one. We can commit to educating them about options and identifying a plan for active surveillance, tailoring our strategies to their needs. Where we can, we can be reassuring and expect our patients to ask serious questions.
In a shared decision-making model, we can instill a sense of trust that our patients can make decisions that are right for their unique life circumstances. Lastly, we can emphasize that active surveillance is a critical aspect of the whole continuum of care. If there is a change that suggests the cancer now requires treatment, more aggressive approaches will be recommended.
Taking the time to truly center on the patient at the onset of their diagnosis goes a long way in building trust and achieving better health outcomes. Our goal is to make sure our patients feel confident and comfortable in the plan we are recommending and ultimately, in the care they are receiving. We should never lose sight of the fact that our patients are at the center of this equation.