Patient Prostate Cancer Journey Part 3: Shared Decision-Making Benefits to Prostate Cancer Treatment

This is the third post documenting my journey, beginning with the prostate checkup, including the primary care doctor’s initial digital rectal exam (DRE) and referral to a urologist, additional tests such as the blood-based prostate specific antigen test (PSA), biopsy of the prostate, and my eventual choice for active surveillance.

Prostate cancer treatment and shared decision-making

I had a bad experience with a doctor once. I tried to ask about a recommended procedure and was told I should just trust my doctor and not ask any questions. That did not create trust. I felt belittled and eventually stopped seeing that clinician.

We used to refer to a clinician’s relationship with patients as “bedside manner.” That term has evolved as medical practices have become more open to patient/clinician communications. When thinking about all the relationships we have over a lifetime, some of the best should be with medical practitioners.

As you learn about prostate cancer, relationships with your urologist should be a priority. In times of urgency, effective communication becomes imperative, and communication in prostate cancer care is no exception. I’ll share my perspective on some key parts of the doctor/patient relationship that can develop into shared decision-making and other benefits. This blog might help educate you about prostate cancer (PCa) shared decision-making, but your clinician relationship is the proving ground for understanding.

What is shared decision-making?

Shared decision-making with your primary care physician, specialist, nurse practitioner and others is a mutual exchange of information based on the complete disclosure by either party of all known facts relative to the case.

The doctor tells you everything he or she knows, and you disclose to the doctor everything you know about your body and your observations that may impact your health. That includes your lifestyle and any behavior that may jeopardize your wellness, such as tobacco smoking or recreational drug use. Likewise, based on your health record being complete and what you share, the practitioners will tell you what you can expect from their care, including treatments, medications, frequency of appointments and even major medical decisions on your behalf.

What is not shared decision-making

Shared decision-making is not arrogance, willful disrespect by either party toward the other, selective recall or hearing, or any other behavior that will jeopardize a trustful relationship. In my opinion, nothing is more important than knowing your doctor is competent and willing to teach you.

When you should ask questions about your prostate cancer

Part of what leads to mutual or shared decision-making is the patient’s need for information and understanding. In the past, doctors made most of the decisions about appointments, what would happen, and when. That might be easy for most patients to sometimes accept but might cause surprises for others.

I remember once going in to see a specialist and unexpectedly being led to a procedure room. That was alarming, and it turned out it happened because the clinic had another patient with a similar last name! Mistakes happen. If you and your doctor have a good relationship with shared decisions, then you will have no reticence asking about anything, be it an appointment, a new medicine, or any other concern.

When to ask for more time before cancer treatment or exams

There will be times when other priorities in your life come first, particularly the needs of loved ones and family. You may hesitate to ask for more time for a procedure or examination, but a simple guideline is to ask whether a delay would cause you harm or place you at a higher risk. If your doctor thinks either is the case, then don’t delay. Be sure to ask why the doctor wants a timely treatment and explain any family considerations or other events you may need to weigh.

Be upfront about prostate cancer fears

Fear. We all live with it and have known it with our health. I recall a time when anyone with cancer was to be pitied, because we often only heard about someone’s cancer after they had died. Deadly circumstances can be traumatizing. Trauma is the medical term for an event that causes physical and mental anguish one can’t control. There are many other causes of trauma, but a sorrowful, painful, or scary treatment experience can be a cause.

It is constructive to admit to your doctor that your prostate cancer diagnosis scares you, makes you lose sleep, distracts from enjoyment, or causes you to see a therapist. Your doctor will want to know and will respect your fear and likely work with you to find help, such as a therapy, or reassure you that a traumatic experience is unlikely.

A good relationship with a urologist or any doctor depends on you admitting all concerns to your clinicians. They are there to help and likely have better news for you than you might expect. Don’t go it alone like most men. Don’t be a lone wolf and try to “tough it out,” only to make your medical care a burden rather than a relief.

A good relationship with a urologist or any doctor depends on you admitting all concerns to your clinicians. They are there to help and likely have better news for you than you might expect. Don’t go it alone like most men. Don’t be a lone wolf and try to “tough it out,” only to make your medical care a burden rather than a relief.

I hope this post helps and that you are ready to share all pertinent information, including your fears, with your doctor and to develop a positive, shared decision-making relationship.

Stay tuned for my next post.

Geoff is dedicated to helping families and friends support a prostate cancer patient. He joined the board of Active Surveillance Patients International (ASPI) in 2018 and is an 11-year PCa patient. As a PCa patient advocate, he envisions providing a broad understanding of how patients can collaborate with clinicians for realistic medical care. He enjoys meeting and learning from his clinicians, cancer researchers, providing free online programs for patients, and reminds us that “to live, learn and thrive with PCa” is the motto of ASPI. He is glad he took science courses for understanding a healthy lifestyle that includes exercise and diet.

Geoff also volunteers as a board member and past chairman of the Placer County Mental Health Advisory Board where his interest includes therapy and resources for AS men, and a broad oversight of community mental health programs and innovations. He is married to Constance McLennan, a fine artist, has a grown son, and lives in Northern California.

Want to read more like this? Read Patient Prostate Cancer Journey Part 2: Getting to Active Surveillance