What newly diagnosed patients expect from prostate cancer treatment

A newly published study appearing in the Journal of the American Board of Family Medicine appears to demonstrate that patients newly diagnosed with localized prostate cancer grossly underestimate their life expectancy without treatment and grossly overestimate the survival benefit of treatment.

We know that the rate of prostate cancer-specific mortality is projected to be 1 percent in 15 years in approximately 75 percent of patients with screen-detected localized prostate cancer. We also know that over 90 percent of newly diagnosed patients with localized prostate cancer choose to undergo treatment — even though treatment often damages health-related quality of life. However, no data have previously been available regarding the benefit patients expected from treatment.

Mohan et al. sent a self-administered survey to 184 men with newly diagnosed, localized prostate cancer. The survey was designed to ask patients their impressions about expected survival with treatment versus observation. The results of this survey can be summarized as follows:

  • > 90 percent of patients had at least a high school education and ninth-grade health literacy.
  • 68 percent of patients had an income of ≥ $50,000.
  • The patients’ mean Gleason score was 6.6.
  • 23 patients (12.5 percent) chose observation and 161 patients (87.5 percent) chose surgery or radiotherapy.
  • The patients’ mean comorbidity-adjusted life expectancy (CALE) without the cancer was 22.9 years.
  • Without prostate cancer treatment:
    • 15.2 percent of the patients expected to live < 5 years
    • 48.8 percent expected to live for 5 to 10 years
    • 33.5 percent expected to live for 11 to 19 years
    • Only 2.4 percent expected to live for ≥ 20 years
  • By comparison, with treatment for their prostate cancer:
    • 0.6 percent expected to live for < 5 years
    • 6.5 percent expected to live for 5 to 10 years
    • 30.0 percent expected to live for 11 to 19 years
    • 62.9 percent expected to live for ≥ 20 years.

The authors report that age, PSA level, CALE, anxiety, depression, and social support were all factors that predicted differences between CALE and patient survival expectations with and without treatment.

What is clear from this study is that the patients’ expectations of their treatment (or lack of it) bore little relation ship to reality. These data would seem to correlate with the types of behaviors and questions that are evident from peer discussions between newly diagnosed patients and other, previously treated patients — especially patients previously diagnosed with and treated for localized disease.

The “New” Prostate Cancer InfoLink suspects that this information may be of considerable importance in helping men to really understand the realities of prostate cancer treatment — especially if there are really good ways to validate data on the long-term outcome data for specific groups of patients, with and without early first-line therapy as opposed to some form of expectant management.

It would also be extremely interesting to see similar data from a significantly larger study in which (a) patients were carefully stratified by age and risk for progression and (b) patients were randomized to participate or not participate in a carefully structured conversation with a patient educator prior to completion of the survey.

10 Responses

  1. What would be helpful would be to have those expectations lined up against what the actual numbers are. What is the average person diagnosed with prostate cancer’s life expectancy without treatment, or with it? Both sets of numbers in this study sound wildly optimistic to me. Most of the men I’ve known who have died from prostate cancer did so well within 5 years even with treatment. It seems like there ought to be three sets of numbers out there: one for people who elect to not get treated, one for people whose treatment is successful, and one for people whose initial treatment is not successful. Anyone know those numbers?

  2. Dear Mr. Arnold:

    The numbers in this study refer only to men initially diagnosed with localized disease, but the abstract does not define these patients in detail. In addition, this is a small study: probably too small to be able to use for counseling purposes with any real degree of accuracy.

    There are certainly extensive long-term data on survival and side effects from patients managed by watchful waiting, surgery, external beam radiotherapy, and brachytherapy. However, these data are generally from patients diagnosed before or at best in the early years of PSA testing. They probably do not accurately reflect the majority of patients being diagnosed today.

    I would consider this to be a pilot study for a larger study which would need to include accepted and accurate estimates of the data you refer to computed for low, intermediate, and high risk patients using the D’Amico risk criteria.

  3. So based on the comments from this article, expecting to live 20+ years after being treated for localized prostate cancer is grossly optimistic? I was diagnosed and treated at 37, so 20 years is not long. What is the realistic timeframe? Where are the stats for this? Thanks!

  4. Dear Mike:

    The abstract for this paper does not give even the range of the ages of the patients in this study (although they are probably given in the full paper). However, I think it would be safe to assume that at least 75-80% of these patients would have been 50+ years of age.

    As a man diagnosed and treated at age 37, I think it would be unwise to consider that data from such a small study applied to you. Depending on your precise diagnosis, how you were treated, and how long you have had a low and stable PSA level since your treatment, it might be perfectly reasonable for you to consider your life expectancy as being a further 30-40 years.

    This is exactly why, in the original report on the paper, I wrote that it would be “interesting to see similar data from a significantly larger study in which … patients were carefully stratified by age and risk for progression.”

  5. No surprises here — this paper is consistent with so much of what has been published and that you have discussed here.

    People in this country (at least) have been given the impression that cancer is something that needs to be treated and that treatment will cure them and improve their lives.

    People need to be better informed of the risks and benefits of treating and not treating. It will take years of education to change the current perception to something that aligns better with the known facts.

  6. Although the question of death from PCa looms so large in the minds of every man who hears the word “cancer” being applied to him, there is surprisingly little discussion on the subject on the Internet or in hard copy media.

    My personal effort at addressing this subject, an article titled The Elephant In The Room is aimed at giving newly diagnosed men some basic information to consider and to explore and hopefully to discuss with their informed medical advisors.

  7. As a newly diagnosed prostate cancer patient (51 years old, PSA of 0.97, T2a, Gleason 6), I’m struggling with treatment options. Is it best to have radical prostatectomy as my urologist suggests? I have no family history or symptoms but had a nodule (that was ultimately found to be benign) that led to two biopsies (two of 38 core samples came back 5% positive). Then I read that at least one male in six has PC and that small amounts of low grade PC are known to be present in 30% of the general population over 50 (PCRI Insights August 2003 vol 6, no. 3 by Mark Scholtz, MD Prostate Oncology Specialists citing two other studies) creating more anxiety about over-reacting. Maybe ADT or watchful waiting is best despite my young age. Is there a way to get a team to review my full file and make a suggestion? I know Johns Hopkins and the Cleveland Clinic are highly rated for their urological care but is this their approach? If RP is the way to go, is there someplace to find out who the best Da Vinci robot surgeons are or at least who has the most experience? Quality of care is obviously a huge determinant in how a patient fares. I realize you can’t dispense medical advice but any suggestions about how to gather more info at least would be helpful.

  8. Dear Paul K.:

    At the top left of this page you will see a button that says, “Visit our SOCIAL NETWORK.” If you click on this button it will take you to a site that is populated by nearly 1,000 people who have been where you are today. They will willingly share with you their knowledge and experience, and help you to think through what you need to do. When you join that network, put the information you have given above into your “Profile Infomation” under the heading “About Me.”

  9. My father had his prostate removed and was cancer free for 3 years. Now his numbers are back to 0.04 and his doctor told him to start radiation but the doctor he sent him to said he won’t treat him due to being a high risk because of prior surgeries. Says it will undo scar tissue. Has anyone heard of this problem? Just don’t know what to do.

  10. Troy:
    First, a PSA level of 0.04 ng/ml 3 years after a radical prostatectomy would not normally be considered an indication for radiotherapy (although there may be specific reasons in your father’s case). Second, I suggest your father gets a second opinion from someone who really specializes in the managment of prostate cancer before he does anything. Third, if you join our social network and can give us greater detail about your father’s medical history, we may be able to offer some other ideas.

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