What DID the doctor actually tell you about your prostate cancer?

It is well understood that there can be big differences between what we are told and what we later say and think that we heard. It is also the case that what we are told may commonly reflect the beliefs of the person doing the telling (as opposed to actual, factual information).

Xu et al. have recently published data from a small series of semi-structured interviews with recently diagnosed prostate cancer patients. The interviews were conducted to investigate exactly how this series of 21 American men (14 black and 7 white) made their treatment decisions.

Here is a summary of the key findings:

  • Physician recommendation was “very important” to the final treatment decision.
  • The patients’ self-perceptions, their values and attitudes, and their beliefs about prostate cancer were “influential.”
  • Men who elected to have surgery apparently believed that
    • It offered the best chance of cure .
    • The cancer might spread if not surgically removed.
  • Men who elected to have radiation therapy believed that
    • It offered equal curative efficacy to surgery.
    • It was associated with fewer side effects than surgery.
  • Fear of future consequences was the most common reason to reject watchful waiting.
  • Anecdotal experiences of family and friends were important, especially in deciding “what not to do.”
  • The technological “wizardry” of robot-assisted laparoscopic prostatectomy gave increased optimism to men who wanted surgery but were concerned about the morbidity associated with traditional open surgery.
  • Few men seemed to be aware that treatment did not guarantee improved survival.

The telling piece of information here, of course, is the fact that few of these 21 men apparently understood that invasive treatment for localized prostate cancer does not come with any guarantee of any improvement in survival compared to deferred treatment (particularly for low-risk patients of 65 years and older). This immediately raises the question of what men are actually told or hear when they discuss prostate cancer treatment with physicians. And it is closely linked to the recent data suggesting that men have unreasonable expectations of their individual outcomes following surgical treatment for localized disease (even after extensive explanation of their potential risks).

We know that the diagnosis of any form of cancer tends to be traumatic. We also know that many people given a diagnosis of cancer are unable to process with accuracy any information about expectations or treatment that are given to them in the short term.

How can we resolve this problem? Is there a set of minimal information that should be handed, in writing, to every newly diagnosed prostate cancer patient that addresses the facts about the risks associated with treatment and non-treatment? Does such information need to take account of whether they have low-, intermediate-, or high-risk disease? Should physicians be required to tell all patients that there is no guarantee that invasive therapy will affect either their cancer-specific or their overall survival? And even if we do things like this, how do we assure ourselves that patients actually hear and “process” this information appropriately?

7 Responses

  1. My doctor started out with active surveillance. He repeated the biopsy and the results showed an increase in the presence of cancer. His recommendation was surgery. This was in large part most likely due to his background as a surgeon. The surgery was successful in as much as the cancer was still contained within the prostate, and had not spread to the seminal vesicles or the margins. What was not discussed with any real clarity was the effect of surgery on sexual function post-surgery. My perception of the probability of the cancer spreading was due to several years of having biopsies that showed an increase in the presence of cancer. On retrospection, I most likely should have seen an oncologist at some point to determine if the cancer was better treated with radiation or surgery.

  2. The thing that I think people who don’t have cancer can’t seem to get through their heads is that it isn’t that easy to just sit there and do nothing when you are told you have cancer. No matter how small the chance is that treatment will give you some shot at extended survival you feel like a fool for not trying. You always hope that you will be in that small percentage that it may make a difference to.

    Yes, when you have cancer you tend to “grasp at staws.” You have nothing to lose by trying. The other problem is that you constantly see one study saying treatment makes no difference and then another one saying it does. Honestly, people don’t know what to believe. So, logically, most people err on the side of caution and try something. I did. I am hoping that in 25 years surgery will make a difference to someone like me. As you know most studies don’t go beyond 10 or 15 years. So, they don’t know if treatment carried out in a younger patient for low-risk cancer like me will make a difference or not. Maybe the pay back is 25 years from treatment. But I bet by then there will be studies still contradicting each other.

  3. Chris:

    Two comments:

    (1) For younger men (like you and Tony Crispino) with a life expectancy of 25 years or more, the situation is rather different than for the vast majority of newly diagnosed prostate cancer patients (who are 65 and older with a life expectancy of much more like 15 years).

    (2) The problem is that a significant percentage of younger (and older) men with low-risk disease do actually have a lot “to lose by trying,” including their sexual function, their continence, their self-image, and their joie de vivre. Many of them really don’t understand what they are risking until it is too late … and you are right, the medical community does not provide a clear and coherent message.

  4. People might find it of some interest to have a look at two MiniPolls I ran on my site which touch on these issues.

    The first — titled “Did You Get What You Wanted” — is here.

    The second — dealing mainly with what are termed the “minor” side effects — is here.

    These polls have no scientific value and may well be biased, but I think they do shine a bit of light on what men think they heard. There is no doubt in my mind that hearing the word “cancer” applied to oneself reduces the ability to absorb much information initially.

    I believe that anyone delivering a cancer verdict should ensure that there is a follow-up meeting within a fairly short time to discuss as objectively as possible just what the options might be. Neutral written information that provides a good basic understanding should be provided at this meeting. The cost of such a publication would be minimal in the overall costs involved in the treatment of prostate cancer.

  5. I fully appreciate your comments, and you are right, 99.9% of all men don’t fully understand the side effects of a treatment. But, when you are being told you have cancer you go into a survival mode, not a quality of life mode. Anyone who says different is lying.

    For me when I was sitting in the doctor’s office listening to him tell me I had cancer the only thought going through my head was, “What treatment will give me the best chance at survival?” I didn’t care what the side effects where. I really believe that if you could “guarantee” a cure to people, 99.9% of the would put up with the side effects if the alternative was death.

    I really get annoyed when I read about people who don’t have cancer say, “The treatment is worse then the cancer.” They are in no position to make any kind of a judgement whatsoever. One day — if/when they do get cancer — we will see just how many of the “side effects” they are willing to endure.

    I was luck., I don’t have ED and I have slight incontinence. Sure sometimes I leak a little and then my underwear will smell the rest of the day. It’s a small price to pay, IMO. It’s not to hard to stick a pad in your pants once or twice a day. Women deal with it all the time and they don’t act like it’s the end of the world. …

    What I would give more then anything is to have the psychological burden of it off my shoulders. This is where the industry is “missing the boat.”

    Just venting …

  6. I’m not lying Chris. I went into a quality of life mode, maybe it’s because I know men who still died from the prostate cancer after having surgery, one being my own GP; maybe it’s because I have a neighbor who won’t leave his house after surgery. My urologist told me that I better schedule surgery right away, waiting 1 month was pushing it, ED was up to 90% (“up to”?), and incontinence would be 2 years. Yet, my Gleason was 6, I was 62. I was more scared of the treatment than the disease, so I chose a new treatment, one that while it hasn’t been tried and tested for years made logical sense to me. It’s ultrasound, HIFU, and I’m very happy that I did.

  7. Most men seem to be happy with theiir choice — or will not admit to not being happy — and I’m not an exception.

    I was urged to have early surgery when I was diagnosed in 1996 because I was (at age 54) so young. I have been asked a number of times why I didn’t choose this course of action, since all the experts (and all the men on Internet forums) were adamant that this gold standard was the only sensible course. I won’t clutter up this site with my reasons for doing what I did, but anyone interested might like to read my rationale.

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