Coping skills, emotional trauma, and living with prostate cancer

The authors of a newly published paper on stress management and coping skills among men on active surveillance as a first-line management strategy for prostate cancer begin the abstract of their paper with the following sentence:

Little is known about whether and how stress management skills may improve adjustment for men diagnosed with prostate cancer who opt for active surveillance.

The “New” Prostate Cancer feels obliged to respond to this statement by asking, “Little is known by whom?”

Almost every prostate cancer patient and many, many of their partners and close family members will be extremely well aware of the stress factors that accompany a diagnosis of prostate cancer and the subsequent management of this disorder — whether by active surveillance or any other form of treatment. They will also rapidly become aware that the ability of the patient and his family to “cope” with these stress factors is a critical factor in actually living with the knowledge that the disease may recur or progress at any time and/or of living with the consequences of treatment.

The critical question is really not about whether stress management skills “may approve adjustment”. It is about why there is an almost complete lack of coordinated counseling designed to help men and their families understand precisely how to deal with a diagnosis of prostate cancer and its management. Referrals to counselors such as Anne Katz after diagnosis is the exception as opposed to the rule; further access to such counselors as needed is probably even less commonly available.

While we are sure that the authors of the paper in question didn’t mean to come across as naive, and while appropriate measurement of the stress management skills of men on active surveillance may be intellectually and scientifically interesting, their conclusion that “interventions aimed at improving coping in men undergoing active surveillance” are important in the overall management of such patients didn’t need a research paper. Any physician who treats prostate cancer should understand this before they are allowed near a patient! Indeed, the coping skills of some men and their close family members may be such that these are a critical factor in helping to determine the type of treatment they should be receiving. Good “copers” will probably find it a lot easier to opt for active surveillance when it is offered and appropriate. Poor “copers” may do much better if they get treatment — so long as they are fully and thoroughly informed about the risks of all types of treatment available.

A diagnosis of prostate cancer is hard, and often very hard, for nearly every man to deal with. The ability to handle the implications, to accept the expected (and the unexpected) consequences, and to be able to manage not just one’s own expectations but also the expectations of wives, friends, partners, and children, is a key factor in moving forward after an initial diagnosis. If one’s physicians aren’t aware of, focused on, and understanding of this, then the wise patient should seek a better set of physicians (if that is possible).

The psychological and emotional trauma associated with a diagnosis of prostate cancer is devastating for some men — even some men who one would expect to have good coping skills (e.g., some men with type A personalities who are unable to deal easily with the loss of “control” over their biology). The fact that too many physicians seem to bring their own particular prejudices to the question of how best to manage patients only adds to the problem, because it means that it is incredibly hard for men to receive neutral and unbiased guidance about all of the options that may be available to them. The lack of such guidance can add to the patient’s stress if/when he discovers that a treatment had side effects he wasn’t made aware of, or that nerve-sparing surgery wasn’t some sort of guarantee that he would retain normal erectile and sexual function.

Assessment of the stress management skills of a man with prostate cancer should, in our opinion, be a key component of the diagnostic and management process, and early referral for appropriate counseling (of the type discussed by Anne Katz in her article that we now refer to on a regular basis) is critical. Is this important for men on active surveillance? Of course it is. They are living with the knowledge that their cancer could suddenly change from being a low-risk and relatively “safe” disorder to being of higher risk and requiring (or at least strongly suggesting) the need for immediate treatment. But many, many men with a diagnosis of prostate cancer (and often their partners too) would benefit from additional counseling over time. Coping with the stresses of active surveillance can be very hard. So can coping with the stresses of loss (of erectile and sexual function) or even of very mild incontinence in men who appear to have been cured of their cancer.

Isn’t it high time that the health care community made assistance with the stress of “coping” with prostate cancer an integral part of the management of this disease? Prostate cancer is far from being a simple physical disorder … and we all know it! We also all understand that how well one can cope with the associated stresses can define the quality of one’s life after diagnosis.

13 Responses

  1. Excellent post! Best one all year, IMO.

    When I was diagnosed, I had to discover all of that on my own. After a short period of “not coping”, I emerged to be a very good “coper”. Not everyone can be so lucky.

  2. The medical community will deal with what they deal with best — try to cure the disease. They are not well versed in the humanity of the situation. They are not trained for it and they do not get paid for it. It is likely that insurance will not reimburse for it and if it does, the rate of reimbursement is likely minimal. As smart and as compassionate as we can be as Homo sapiens we also have the flip side that is political and greedy. In most cases re-election and the bottom line win out.

    Perhaps I am lucky to be a Type B personality. I went through the initial shock and have adapted well to this point although (knock on wood) I have not had any recent bumps in the long road to a cure or a lengthy and healthy status quo.

    I think this situation also relates to how we and the medical community deal with the aging and dying population (we all age and die). Quality of life in our final years takes a back seat to the profitability of assisted living institutions and the costly medical interventions that do not prolong life in a meaningful way. (Cancer patients experience this as the disease progresses and we try to cling to hope in the face of the horrendously uncertain results of experimental interventions.)

    How do we change this way of thinking?

    A good recent book on this latter subject is called Being Mortal.

  3. I guess it is positive that someone is wanting to find out whether stress management skills may improve adjustment for men diagnosed with prostate cancer. I agree with our sitemaster that this study seems naive. It is. And, yes, stress management skills do improve adjustment.

    Having had the benefit of Anne Katz’ counseling, I have been surprised to find out that this type of support is not widely available. It is a no-brainer from my point of view.

    That said, more needs to be done. In addition to counseling, helpful as that was, I found the open and frank support of the men in my mens group essential. The support of my wife, while absolutely necessary, was not enough. The support of professionals, also essential, was not enough. I needed and was fortunate enough to obtain the support of other men — in my case from men who did not have prostate cancer (whether or not they had prostate cancer was not relevant — like all men, they knew what it is like to be afraid, to worry about sex, to be sad, to be in despair).

    I did also attend a prostate support group, which was wonderful, but which did not provide the safety I needed in order to deal with the reality of the changes and challenges I was experiencing — impotence, incontinence, and fear of dying. I found that I was not supported when I tried to talk about the fear, anger, and despair I was experiencing. The group was wonderful in other respects, but not that.

    I would be interested in learning whether or not my experience at my prostate support group is different from that of other men. If my experience is not unique, I would welcome the opportunity to discuss how these topics could safely and routinely be added to the prostate cancer support group agenda.

  4. This is such an important post. Our marriage took a nose dive after my husband’s treatment for prostate cancer, and I think it came closer to killing him than the cancer ever did.

    Every couple should be offered sexual therapy after treatment — and that offer needs to be extended not just to the patient, but to their partner as well. My husband was convinced from day one that everything would be fine; I was much more concerned. I felt like I had been told, essentially, “Your sex life is over, lady,” and even though they didn’t say that, that was my forbidden thought, and, unfortunately exactly what happened. He was just glad to be “cured” — in fact, he would probably report that he coped very well — but I was lonely, unhappy, and too guilt-ridden and confused to deal with it effectively. Perhaps if we had been encouraged into therapy the outcome would have been much different. I don’t know.

  5. I second Walt’s response. You don’t often take such a strong stance, and when you do, it’s notable and well justified.

    I couldn’t agree more with your incredulity at the authors’ poor choice of words (or possibly outright ignorance), and with your advocacy that a man with prostate cancer should be first and foremost regarded as a man, not as a cancer.

  6. Further to Clara’s comment — I found dealing with my cancer, impotence, and incontinence to be one of the biggest challenges of my life. I don’t know if this is the place to mention that I have just published a book about it called Ripped Out: One Man’s Journey Surviving Prostate Cancer, which is available now in hard copy and will be available shortly as an ebook. My e-mail is I believe that my book can be helpful to men and their wives in dealing with what we had to.

  7. Well said. I wish your comments could be published in the journal of the American Urological Association. Urologists get the first shot at every newly diagnosed man and none of them are any good at counseling. They are good at diagnosing and treating but not talking.

  8. Clara, unfortunately your story is not a unique one. :-(

  9. Yup. I’m trying to chase down the original article behind this story.

    Richard W.

  10. Dear Bob Lederer:

    While I would concur that the majority of urologists (surgeons all by training) could do a great deal better in the communications skills department, and our healthcare system doesn’t offer any way for them to get compensated reasonably for their time in offering counseling (which doesn’t help), I think it is a little unfair to tar all urologists and urologic oncologists with the same brush. I am aware of at least a few with excellent communications skills … and I am also aware of many patients who are also lacking in the communications skills department and who can’t hear, don’t hear, or won’t listen to what they are being told. It’s not a one-way street: it’s a systems problem.

  11. You are right. This is a systems problem. Blaming urologists or patients is unfortunate and only productive to the extent that the conversation moves us into action.

  12. “While I would concur that the majority of urologists (surgeons all by training) could do a great deal better in the communications skills department, and our healthcare system doesn’t offer any way for them to get compensated reasonably for their time in offering counseling (which doesn’t help),”

    Totally agree. The current method is like getting your plumber to do your interior decorating because he knows why your walls are damaged.

    From a cost basis, let alone social skills basis, it is so much more sensible to have a FNP or similar take care of that most valuable and crucial stage.

    Clara, Thank you for your input.

  13. Another question, what if you lose your health insurance while on active surveillance? Did you sign your death certificate? This happened to two aquaintances. They couldn’t continue with their previous doctors,and it was very difficult for them to find a new urologist with the same experience that took state insurance, which took months to get. Some may say that one should seriously consider treatment when you have the chance. Just something to think about.

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