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Chronic Illness

What My Patients Have Taught Me During Their Cancer Journeys

What I've learned over 20 years for a patient-centric approach to cancer care.

As a radiation oncologist, I have the privilege of walking alongside my patients through their cancer journeys. While I certainly won’t dismiss anything I learned during medical school, there is something to be said for real-world conversations, many of which have served as my greatest teachers. During my 20 years of medical experience, I’ve had several conversations with both peers and patients that have influenced my approach to care; causing me to refine and improve my approach. There are virtually endless examples, however, I’ve selected a few of the most common conversations I’ve had and how they have shaped my practice.

Confidence around the treatment selected is a primary concern

One of the most important lessons I've learned is the critical role that confidence plays in a patient's journey. This is often the red thread in almost every conversation when it comes to care.

Patients want to be assured that their clinician prioritizes their best interests when selecting a treatment. Building trust between patients and clinicians involves several factors. Some of these factors are within the clinician's control, while others are not. Clinicians need to consider and address these factors when working with patients.

Establishing trust is crucial, particularly when caring for minority patients. For instance, Black men often exhibit higher levels of mistrust towards their doctors during cancer care, largely due to a history of medical racism in the U.S. Unfortunately, this troubling history often deters doctors from deviating from standard care practices when treating Black patients. Research illustrates significant disparities, such as Black prostate cancer patients being less likely than their White counterparts to receive innovative hormonal therapies, even after adjusting for stage, disease characteristics, and socioeconomic factors. Studies across various diseases show that patients tend to have better treatment adherence when treated by providers from similar backgrounds.

In situations where patients cannot always be matched with clinicians of the same background, building trust with patients from diverse ethnic or racial backgrounds starts with empathy and a genuine commitment to understanding their individual needs. In cancer care, where treatment options abound, it is crucial to ensure that the chosen treatment is personalized for each patient. This often means transparently outlining the decision-making process and explaining how the recommended treatment aligns with their specific circumstances.

Patients today desire a more active role in their treatment plans. They value education on all available options and their implications. To secure this information, patients typically gather information not only from clinicians but also from trusted sources like advocacy groups, established guidelines, and fellow patients who share similar experiences. This journey empowers them to contribute meaningfully to the decision-making process and feel confident in making informed choices about their care. While clinicians provide expertise and experience, it's important to recognize that it is the patient who ultimately lives with the outcomes of these decisions.

Credibility is key when delivering cancer care

I can’t overstate that today’s patients are well-informed and equipped with insightful questions. One question I hear frequently centers around credibility – ensuring that any treatment plan we adopt is supported by reliable sources. Patients want to know:

  • Whether a test or treatment is endorsed by respected organizations like the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), considered the gold standard among oncologists for delivering high-quality care tailored to specific patient populations.
  • Whether a test or treatment has been tested across diverse populations, acknowledging the existing gaps in research diversity.
  • Information around reimbursement from the Centers for Medicare and Medicaid (CMS); this information can also allow patients to feel confident that the option has been rigorously reviewed, validated, and is financially accessible.

Life experience offers invaluable insight into personalizing treatment

I'm in my 40s and routinely see prostate cancer patients 20, 30, or 40 years older than me. I've come to realize that while I may have a deeper understanding of cancer pathology, these patients possess a wealth of life experience. There's an adage that still rings true today, “most men will die with prostate cancer, not from it.” Age brings perspective and these patients know what is most important to them.

For example, I had a patient in his 80s who was informed of cancer recurrence, but his primary concern was ensuring that the treatment we selected would not interfere with his travel plans. He wasn’t opting out of treatment, but he wanted to explore options that could help offer the highest quality of life (QoL).

QoL matters. As I’ve shared before, “When faced with multiple treatment options, it is important to consider the potential long-term changes and side effects of each treatment to make a good decision.”

In prostate cancer, the standard of care for intermediate-risk localized prostate cancer is short-term androgen deprivation therapy (ST-ADT) in combination with radiation therapy (RT + ST-ADT), but only 34% of patients may benefit from intensified treatment with ADT. This therapy can have devastating side effects that negatively affect patients’ QoL, including erectile dysfunction, incontinence, and increased risk of cardiovascular disease and mental health issues that in many cases may be avoidable.

If we can determine that a particular patient wouldn't benefit from ADT, then we can omit ADT to spare them from the QoL impact of that therapy. However, if ADT does have a benefit for the patient, they can make an informed decision about trading off short-term QoL impact for long-term longevity. Precision medicine tests can now help make such insights possible. Overall, trust in the treatment's potential benefits enhances patient adherence, fostering a sense of empowerment that could make the cancer journey more bearable.

The unknown can sometimes be more intimidating than a cancer diagnosis

Patients have shared with me that after receiving a cancer diagnosis, they enter a fog. They are often unable to process the information provided and walk out feeling confused and powerless. There is an old saying that knowledge is power. I believe that by empowering my patients with options and pointing to the latest tools to personalize their care, they can take some of this power back.

Taking the time to support patients in processing their diagnosis is crucial, along with directing them to trustworthy resources and communities where they can connect with others who share similar experiences. Patients seek both knowledge and reassurance that they are not navigating their journey alone. Beyond the physical toll, cancer often brings hidden challenges such as depression and mental health concerns. In one study, over half of cancer patients surveyed reported grappling more with mental challenges than with the physical aspects of treatment and its side effects. That's why I encourage my patients to explore resources like Zero Prostate, and patient perspectives when it comes to tests, treatments, and experiences.

It is impossible to encapsulate all that my patients have taught me and how profoundly they have shaped my approach to care. Likewise, words cannot convey the depth of my admiration for each of them. Their bravery, resilience, and wisdom will stay with me for a lifetime. I am certain I will continue to learn from them throughout my career. I hope these lessons inspire both clinicians and patients to keep sharing questions, ideas, and concerns that will shape the future of care.

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