Patients’ decisions, patients’ expectations, and surgery for localized prostate cancer

Two articles and an associated editorial, currently in press in the Journal of Urology, offer insight into the pre-treatment expectations and the post-treatment realities of men who decide to have surgical treatment for localized prostate cancer.

In the first of these articles, Wittman et al. offer data from a survey of 150+ patients, all of whom decided to have a radical prostatectomy after extensive pre-treatment counseling about the potential outcomes. The patients were all counseled and treated at a respected, tertiary care, prostate treatment center between June 2007 and November 2008. They were asked to complete surveys — using the short form of the Expanded Prostate Index Composite — at baseline (i.e., prior to treatment) and at 12 months post-surgery. 

The results of this study were as follows:

  • 152  patients completed all questionnaires.
  • At baseline (after the extensive counseling)
    • 36 percent of patients expected their “normal” level of continence 12 months post-surgery.
    • 40 percent of patients expected their “normal” level of sexual function at 12 months post-surgery.
    • 17 percent of patients expected worse than baseline of continence at 12 months post-surgery.
    • 45 percent of patients expected a worse than baseline level of irritable urinary symptoms at 12 months post-surgery.
    • 39 percent of patients expected worse than baseline bowel function at 12 months post-surgery.
    • 15 percent of patients expected worse than baseline hormonal function at 12 months post-surgery.
    • 32 percent of patients expected worse than baseline sexual function at 12 months post-surgery.
    • 12 percent of patients expected better than baseline continence at 12 months post-surgery.
    • 17 percent of patients expected better than baseline sexual function at 12 months post-surgery.
  • In reality, at 12 months post-surgery
    • Less than 22 percent of patients had worse than expected irritable urinary symptoms, bowel function, and hormonal function.
    • 47 percent of patients had worse than expected levels of urinary continence.
    • 44 percent of patients had worse than expected levels of sexual function.

The authors conclude that these patients had unrealistic expectations of urinary and sexual function after prostatectomy despite preoperative counseling, and they suggest that psychological mechanisms of response to diagnosis of cancer and optimism about response to treatment may be responsible. Of course there may be a whole other possible explanation (see below).

The second article, by Lavery et al., addressed patient choice of nerve-sparing as opposed to non-nerve-sparing surgery.

The authors collected data on 150 consecutive patients, all scheduled for treatment with a radical prostatectomy by a single surgeon between June and December 2008. All patients participated in a standardized discussion regarding the about nerve sparing, extracapsular extension, and the possible need for adjuvant radiation (in the event of local recurrence). During this discussion, all patients were given their individual, nomogram-projected risk of extracapsular extension and were asked whether they wished to have nerve-sparing or non-nerve-sparing surgery. Unless grossly invasive disease was encountered during the surgical procedure, the patients’ wishes were followed.

The study findings were as follows:

  • 109/150 men (73 percent) chose nerve-sparing surgery.
  • 41/150 men (27 percent) chose non-nerve-sparing surgery. 
  • Patients electing nerve-sparing had a lower median age, had a lower Gleason scores, had lower median PSA levels, were more likely to have T1c disease, and were more likely to have D’Amico low-risk disease.
  • Nerve-sparing surgery was chosen by
    • 88 percent of patients with a nomogram-predicted risk of extracapsular extension less than 20 percent
    • 41 percent of patients with a nomogram-predicted risk of extracapsular extension of 20 to 50 percent
    • 25 percent of patients with a nomogram-predicted risk of extracapsular extension greater than 50 percent.
  • Patients with lower risks of extracapsular extension electing non-nerve-sparing surgery were older and had higher rates of erectile dysfunction.

The authors draw a series of conclusions:

  • That allowing patients to decide on whether or not to have nerve-sparing surgery is a reasonable strategy.
  • That this strategy did not lead to a high percentage of patients with a high risk of extracapsular extension electing nerve sparing.
  • That properly informed patients made reasonable decisions, and appeared to appropriately prioritize cancer control when risk for extracapsular extension was high.
  • That patients may, in fact, have been overly conservative in electing non-nerve-sparing surgery when the risk was low.

It is perhaps regrettable that this study did not have a control group of patients in whom the nerve-sparing/non-nerve-sparing decision was mad by the surgeon in a traditional manner. As a consequence, the study could not directly test the premise that increasing patient involvement in the decision-making process resulted in higher satisfaction with the decisions and surgical outcomes.

The third article is an editorial commentary by Krupski on the above two studies. Unfortunately this article is only available to subscribers to the Journal of Urology, because it makes a series of excellent points about the whole process of patient counseling and decision-making prior to surgery and treatment in general. Among these, the single most important point is the following:

Physicians need to counsel each patient not on the best possible outcome but on the most likely outcomes based on that patient’s individualized risk factors. Providing patients with a list of survivors who have gone through the same operation, and encouraging them to discuss the timeline of recovery and possibly the severity of symptoms is hugely important. Lastly, participation in local support groups will ensure that when questions arise, multiple avenues are available for answers. Ideally this 3-tiered approach will lead to an optimistic attitude tempered by realistic expectations.

At the end of the day, there is only so much control that any clinical practice can have over what a patient wants to hear. The incurable optimist who wants to have surgery is likely to “hear” that there are men who recover full sexual function and continence post surgery (which is true) — and decide that he will be one of those men. The incurable pessimist will decide that there are men who do well on watchful waiting (which is true) — and will avoid any form of active intervention. And both may be “satisfied” with their decision, regardless of the outcome, because it was their decision and no one else’s.

The concept of patient-centred medical decision making, based on the idea that the well-informed patient is capable of and should be making as many of the key decisions as possible affecting his or her medical care, is growing in application. But it is not a perfect process. We are only human. We make good and bad decisions about almost everything on a daily basis, and it is inevitable that we will do this about our health care too, when we are given the chance. Our will and our ability to “hear” what we are actually being told is a fundamental aspect of our capacity to make good decisions in our own self-interest, even if they may appear to be less than appropriate decisions by informed third parties (such as a surgeon or a medical researcher).

4 Responses

  1. Excellent post!

  2. In my opinion, the importance is an extensive/comprehensive explanation to the patient (and caregiver, if present) of what might result from each available treatment option — that incontinence and impotence is likely to occur with surgical removal of or radiation to the prostate gland. As regards surgical removal, that once in the abdomen (particularly with robot assistance) and visualization of the glandular area, the physician will better be able to determine the likelihood of nerve-sparing, or alternatively, the necessity of removing one or both neurovascular bundles, and what that means to the patient’s future. The physician should explain that in surgery, seminal vesicles will removed and whether adjacent lymph nodes will be removed, and why these organs are removed (or in the case of lymph nodes, why not) for pathological review. The length over which impotence or incontinence has been known to continue for some men and what they can begin doing even pre-treatment to aid in earlier recovery (re kegels, PDE5 inhibitors, weight loss). Explain that if the patient has erectile function issues pre-treatment, he will likely have the same post-treatment. Explain what it means to the patient when neurovascular bundles are removed. In short, be up front and honest with the patient and caregiver rather than wanting to assuage their fears with expectations that may well be unlikely.

  3. “Patient and caregiver”? Anyone ever hear of a partner?

  4. Dear Tracy: For some older patients, it is not uncommon for the “caregiver” to be a daughter or even a son. That would hardly be a “partner”!

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