Does treatment for prostate cancer lead to PTSD (for at least some men)?

The following two statements appear on the web site of the Mayo Clinic under the definition of post-traumatic stress disorder:

Post-traumatic stress disorder (PTSD) is a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.

Many people who go through traumatic events have difficulty adjusting and coping for a while, but they don’t have PTSD — with time and good self-care, they usually get better. But if the symptoms get worse or last for months or even years and interfere with your functioning, you may have PTSD.

We rarely think about the consequences of medical treatment as a form of PTSD, but then the majority of treatments given for the majority of medical conditions do not have deeply stressful, long-term effects on the underpinnings of who we are and how we think about ourselves.

Look again at the last sentence: “But if the symptoms get worse or last for months or even years and interfere with your functioning, you may have PTSD.”

Now think about what happens to many, many men who undergo first-line treatment for prostate cancer (particularly radical prostatectomy, and even a high-quality, nerve-sparing radical prostatectomy, but this risk is actually associated with all forms of first-line treatment for prostate cancer):

  • They lose some or all their ability to get and maintain an erection.
  • They may lose significant size and length of their erect penis.
  • Consequentially, they may also lose
    • A critical psychological component of their sense of maleness and “manhood”
    • The ability to connect well emotionally to their spouse or partner (or indeed anyone else)
    • Their self-confidence as a “man”

And there is no doubt whatsoever that, for at least some of these men, “… the symptoms … last for months or even years and interfere with [their] functioning ….”

This happens even to men who have been well informed prior to their surgery about the probable consequences:

My partner is currently seeing a counsellor and on antidepressants, but the last time we spoke he told me he doesn’t want to talk about it with anyone and plans to cancel the appointments as he doesn’t want to talk about his “feelings” …. The interesting thing is that he was completely aware of the consequences of the treatment — his doctor had told him he would never regain spontaneous erections, the nerves could not be saved and about the likelihood of penile shrinkage — so he was “prepared” — and so decided even before the op he would not be using pumps, injections or implants ever.

If a situation like this continues for 3 months or 6 months or a year, at what point does it become a form of PTSD?

Now let us state immediately that this is not the same type of PTSD as that suffered by women who have been abducted and raped, or soldiers whose wartime experiences can be deeply traumatic. It is obviously very different. But that doesn’t mean that it isn’t a form of PTSD. And the loss of one’s erectile and sexual function (at least for some men) is quite clearly “a terrifying event” — even when it is a terrifying event that they had some degree of control over (in the sense that they either had been told of the probability or fully understood the likelihood, as in the case above). It is certainly akin to the sudden and unexpected loss of a limb or one’s sight.

It is also true that not all men respond to loss of sexual function in this way. Some are able to re-adapt in innovative and new ways. As Anne Katz has decribed it, they are able to find ways to come to terms (sometimes relatively easily) with “an altered way of being a man”. There are even men who have told us that the loss of normal erectile and sexual function actually changed them so radically that it improved their relationships with their wives/partners — in terms of both intimacy and their sexual relationship. But neither of these is true for a significant percentage of prostate cancer patients … and we really have little idea how big this problem is (except that it is not small).

In an “off-line” exchange with a relatively well-known prostate cancer researcher just recently, we noted that it would be really useful if someone was to conduct a large, long-term study of the social and psychological consequences of treatment for prostate cancer, using regular, structured interviews with both the patient and his partner, to see if we could start to get a much better understanding of the extent of this problem and the “outcomes” therefrom.

While there have been small studies of this type and large studies that included aspects of this problem through survey questions, we are not aware of any study that has given us a clear indication of just how common this form of trauma really is; what percentage of patients and their spouses have their interpersonal relationships severely disrupted as a consequence; how many of them enter counseling to try to address the problem; let alone what percentage are actually able to come out the other side into a place where they can rebuild an acceptable new form of intimacy.

When most men were being diagnosed with prostate cancer as a metastatic, short-term, life-threatening disease (back in the mid- to late 1980s), the impact on one’s sex life was minor by comparison. Today, when most men are being diagnosed with forms of prostate cancer that leave them otherwise healthy for another 10, 20, or 30+ years, the loss of one’s sense of maleness can be not only traumatic but debilitating for the long term. How should we be starting to address this problem much better than we have to date?

New forms of therapy (focal therapies definitely included) may be able to help to address this issue, as will an increased understanding and application of expectant management (i.e., active surveillance). But — for example — it would be really nice to know, from long-term follow-up studies, just what percentage of men who are treated with focal laser ablation are totally able to avoid this well-known problem and what percentage are still affected in similar ways. This also remains true for standard forms of nerve-sparing surgery, non-nerve-sparing surgery, and radiation therapies. At present we really don’t have a clue.

This is a place where good data registries combined with good psychosocial research might be able to make a real contribution to our understanding of the ramifications of treatment for prostate cancer.

6 Responses

  1. I am ambivalent about this post.

    On the one hand, it seems like an unnecessary and harmful dilution of the term “PTSD”, riding a bandwagon that has already transported other terms (“ADD”/”ADHD” comes to mind) to the point of faddism. There may be an extremely rare subset of men who experience their altered/diminished self, after treatment, as “terrifying”, with flashbacks and nightmares that are so grippingly inescapable as to be almost hallucinatory.

    But I think many men do indeed experience a significant psychological harm, and for some of them the harm fails to heal and might even worsen. To me, this is more akin to an event-triggered feeling that remains or worsens despite the passage of time that would normally lessen the impact of (for example) a justified feeling of grief at a loss, or humiliation over a failure, or anxiety over a new marriage or career, or the like. Such things can be very real and very debilitating without being “PTSD”.

    So: I admire and applaud your bringing attention to the very real problem of psychological debility that many men experience as a sequela of treatment for prostate cancer. But I’m uneasy about appropriating the term “PTSD” to label it.

  2. Excellent article and even better summary of this important issue by our editor. Thanks for getting this in print. Just like the last article on nurse educators and the help they give to couples.

  3. Dear Paul:

    I am less worried about exactly what one calls it than I am about the very real failure of the medical community to really understand just how devastating the effects of treatment can be for some men and their wives/partners. So I freely admit to asking the question the way I did to “give it high visibility”.

    I find the serious lack of willingness to provide patients here in the USA with wise and neutral counseling about the potential effects of treatment beforehand and the actual effects of treatment afterwards to be increasingly regrettable today. And there is certainly sufficient evidence to justify the psychosocial concept of a near-to-complete inability to accept or adapt to this change in sexual status … whatever name one wants to give it. I have a strong feeling that unless one has actually had to try living with a man who has had this reaction to treatment, it is all too easy to underestimate just how devastating it is … because (unlike a justified feeling of loss, etc.) it is irrational … and it makes almost no sense to the rational.

  4. To make sure we know what we are talking about, here are several points. First, the Sitemaster is right not to worry too much about the name PTSD in this context, as it can occur at many times, more easily than you might think. Second, PTSD was not recognised as a personality disorder until about 1980. Before that it was “shell shock” and several other terms (including cowardice and lack of moral fibre in combat). If memory serves, three recognised symptoms are: flashbacks (and/or nightmares), hypervigilence (overly sensitive to sudden events), and impulsivity. At least one must persist for, I think, 6 months. Finally, these reactions must be traceable to one or more stressful events.

    It is wrong to deride this post as a “dilution” of a faddish term. First, it’s hardly faddish. Ask any soldier returning from the front. Secondly, as we are all different in physiology and experience, almost anybody, say X, can get PTSD, under conditions proper for person X. This is one reason why men about to undergo treatment for prostate cancer should be extensively informed by caring doctors and nurses.

    There is no cure for PTSD, only symptom reduction in frequency and intensity. Some types of psychotherapy can but need not help a sufferer. One is cognitive behavioural therapy and another is EMDR (eye movement desensitisation and reprocessing), an interesting technique. But what works depends on person, caregivers, and context. The use of the first as a cure-all for several or all anxiety disorders is a hot topic right now, in the de facto privatised NHS and in the Swedish health insurance system.

  5. Yes, the manhood issues are real and lasting. Without acknowledgement and treatment it can do permanent harm.

  6. I can relate to this article as I received five second opinions for what course of action I should take. I would wake some mornings while my family was asleep and erupt in uncontrollable crying due to harm my loss of life might do to my family. The surgery was hell and a year later I was told that the cancer was back and I would have to have radiation. How could this be when I don’t even have a prostate any more? It was like getting kicked in the balls and having my heart ripped out at the same time. Not again! So you can call it whatever you like but I just say it’s a f***** way to live life. I have over 35 years in the fire service and I have never had this feeling of overwhelming death that has had such a negative effect on my life.

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