What is the best way for a doctor to tell a patient he has favorable risk cancer?

In another thread currently running ("What is the best way for a doctor to tell a patient he has cancer?") NKinney asks

"What is the best way for a doctor to tell a patient he has favorable-risk cancer?"

and then adds:

"Maybe this very relevant variation of the original question should be it's own thread."

Well, I'm taking him up on that. That's because I think he raises a good point, and a discussion on this question he raises would seem to be a logical sequel to the original thread.

So here's this thread, now open to discuss this issue.

Also, a particular reason that prompted me to start this follow-up discussion was something I read a while back on another PCa forum (can't find the source now, even after looking for it – so frustrating!), and thought at the time that it was a topic that was significant enough that it would be deserving of discussion here on HW PC.

Well now's the opportunity to do so, on this thread, as it is relevant. It was a question as to whether many (or even most) doctors make a point of not telling favorable risk patients that their PCa is just that, favorable risk. This is because the doctors are concerned that if the patient hears phrases like "non-aggressive," or "low-risk," or "not likely to kill you," then the patient may come to think "Well, if the doctor is telling me, in so many words, that, despite its being cancer, it really isn't all that bad, then maybe I'll just not bother with doing anything about it at all. I'll just walk out of here." This of course may not be in the best interest of the patient, favorable risk or not, as even something as basic as future monitoring of the patient may come to be neglected. So to avoid this scenario, doctors avoid sharing with patents the fact that, in reality, their cancer may not be as bad as the patient is apt to think it is, upon hearing he word "cancer"

Perhaps that would be a good starting point for discussion here. Is that a valid concern of doctors, so much so that they would be justified in not telling favorable risk patients that they are just that, for fear that some of these patients may react as described, and do nothing, when they at least should continue to be monitored?

From my POV, your question really has two parts: (1) patients who are good candidates for active surveillance and (2) patients who are not. I'll address #1. Actually, I think that MSK has done such a brilliant job in studying and finding the best way, that I suggest that everyone on HW who responds to someone is is an AS candidate read their study and follow their recommendations. Here's the study;

/www.europeanurology.com/article/S0302-2838(17)30002-7/fulltext

I particularly like their framing recommendation: "we believe that the PSA test has enabled us to find your cancer 4-6 years early and changes to your tumor is not expected until the second decade after diagnosis. Therefore, we could see you again safely in 5 years; however, we will monitor your cancer closely and check a PSA every X months and repeat the biopsy every X years.”

I'll quote their recommendation in full...

MSKCC said...
Elements of the systematic approach to counsel men about active surveillance

Focus on interests as opposed to positions

Instead of debating the patient’s stated preference for a particular treatment, evoke all of a patient’s interests for pursuing treatment, beyond survival. Ask the patient to discuss what the diagnosis of prostate cancer means to him and his family and unmask the underlying interests in the decision. Shift the conversation from positions ("what the patient wants to do to treat their cancer: surgery vs radiation") to interests (e.g., incontinence, frequency/urgency of voiding, erectile function, bowel function, costs, survival).

Use framing principles

• Reset the default: Instead of relegating AS to a secondary or tertiary option, recommend AS as the default management option to boost its appropriateness. First describe AS, then discuss "other" options, including surgery and radiation therapy.

• Leverage social proof: People follow the crowd. Do not describe AS as the option that is seldom chosen in the wider population. Present data that: "all clinical guidelines, including the American Society of Clinical Oncology and the American Urological Association, recommend men like you be managed with active surveillance."

• Leverage loss aversion: People are more motivated to avoid perceived losses than to pursue perceived gains. Emphasize that none of the curative treatments are completely without risks but AS allows the patient to avoid consequences of surgery and radiation therapy, “which are associated with the risk of erectile dysfunction and long-term complications including worsening urinary symptoms, bleeding, or bowel dysfunction/injury."

• Shift the reference point: Even the best proposals can be viewed negatively if they are judged relative to inappropriate reference points. In the case of AS, even close monitoring schedules (prostate biopsy annually) can be evaluated as insufficiently aggressive if the patient is misinformed or overestimates how quickly this type of cancer can progress. Prior to presenting the AS schedule, establish a proper reference point regarding the latent natural history of prostate cancer: "we believe that the PSA test has enabled us to find your cancer 4-6 years early and changes to your tumor is not expected until the second decade after diagnosis. Therefore, we could see you again safely in 5 years; however, we will monitor your cancer closely and check a PSA every X months and repeat the biopsy every X years.”

• Establish credibility: Trust increases when you recommend an option that is contrary to your perceived bias. Emphasize: "I am a surgeon, and although I believe that surgery is beneficial in many cases, ,I do not think there is a benefit to surgery in your case and I am recommend AS for you."

Role of education:

• Present easy to understand figures from long-term studies that illustrate data that demonstrates AS is safe.

Manage expectations

• Preview the experience of patients during active surveillance so that common and predictable future events do not derail the decision.
-- Future anxiety: “Most men feel some anxiety regardless of which option they choose; therefore it is normal for you to have some anxiety in the days ahead. We have resources to help.” “We expect your PSA results to increase during AS and it does not mean that your cancer has changed.”
-- Possibility of resistance or concern from family: “Are you comfortable discussing these ideas with your family? What are some questions they might raise?”

• Provide tools to discuss the plan with other stakeholders: Summarize patient interests, clarify how AS achieves these goals, and make sure the patient understands three key takeaways before leaving:
1) No study has shown that immediate surgery or radiation therapy or your type of cancer improves survival compared to AS;
2) surgery and radiation therapy are associated with significant risks and adverse events;
3) active surveillance is not doing nothing."

• Follow-up with patient by Physician’s team, soon after the visit to address any additional doubts or questions that may have arisen.

TA -
Excellent point on an important aspect of this.