Addressing “sex vs. death” perceptions in prostate cancer treatment

The following is the full text of an article by Anne Katz, RN, PhD, who is a Clinical Nurse Specialist and AASECT-Certified Sexuality Counselor who blogs at ASCO Connection, where this post originally appeared. It is reproduced here with the kind permission of the American Society for Clinical Oncology.

We had mentioned this article yesterday. It is well worth reading with great care.

As part of my role as a Clinical Nurse Specialist in a busy prostate clinic, I see men (with their partner) as part of their decision-making process for active treatment for prostate cancer. The purpose of the appointment is for me to explain the results of their prostate biopsy, dispel any misinformation they may have about what those results mean, and talk to them about the quality-of-life side effects of the various treatment options.

Some men come to see me with a long list of questions, often taken straight from the patient education materials we provide to them. Sometimes, it’s the spouse who has a list of questions, written neatly in a notebook with space below each question where they jot down my responses. Every now and then, a man appears with his wife, two adult children, and one of their partners. I bring in more chairs, take a deep breath, and prepare myself to answer all their questions.

Some men ask me for a recommendation: “What would you do, Doc?” That’s an easy question to answer: I’m a woman, I don’t have a prostate gland, and most important, I am not there to tell them what to do. Others ask me what I would tell my husband to do; this is a more challenging question, and my response to that is that I would support him in making a decision that was right for him because he would have to live with the consequences of his decision.

I always hope that this response models for them that only they can make this decision, that no one, not even a spouse, can truly understand what the side effects of treatment will be like. I stress that I have one purpose for our appointment—I am there to provide them with the information they need, in a format they understand, and to support them as they weigh the pros and cons of each treatment modality.

A few men have walked into my office and declare outright: “I’m having the thing out, and then I don’t have to worry about it again!” Others announce: “There is no way I’m having radiation—that causes cancer!” That provides me with an opportunity to ask them why they believe this, and as they tell me their rationale, I keep in mind that attitudes and beliefs trump knowledge.

The man who thinks that having his prostate surgically removed will also remove any chance of recurrence needs education about the risks of recurrence and the protocol for follow up. But ultimately, if he thinks that surgery is the best treatment for him after a detailed discussion of the side effects and the statistics about recurrence, then I wish him luck and send him to see one of the nurses for pre-op teaching.

The man who believes that radiation causes cancer is not going to be persuaded otherwise. Why would he consent to a treatment that he believes would harm him in the future? Often times, our discussion leaves the man confused; he thought that surgical removal would also remove any risk of recurrence and how could the cancer recur if the prostate is gone? That prompts a short anatomy lesson, and I am often surprised by how much we need to teach in this regard.

And then we have the “sex talk.” If the man has brought his adult children to the appointment, I suggest that they leave to avoid their own embarrassment; this often evokes some laughter and they exit my office quickly. I ask the man about his erectile functioning at the present time and then explain how both surgery and radiation therapy will change things, always for the worse. About 50% of the time, either the man or his partner will say: “Sex doesn’t matter.” That can have different meanings, so I always ask for clarification. And the answer is always: “I would give up sex if it meant I would survive this cancer.”

And then I take a deep breath and explain that this is not the choice he has to make. It is not choosing survival over sex — it is coming to terms with an altered way of being a man. I talk about the role of erections and sexual potential in masculinity, self-image, and quality of life. I don’t describe the consequences through rose-colored lenses — I talk about dry orgasms and penile shrinkage, about incontinence with arousal, about the changes that can happen in the relationship when sex is not there to make up after arguments or to celebrate anniversaries. My intent is not to frighten but to prepare the couple for the rest of their lives without something that for many is the glue that holds the couple together, and for some, is the only manner in which they communicate affection.

A few men shut down the conversation — they don’t want to think about this or perhaps they don’t want to talk to a woman about this. Other men seem surprised that I “know” about this aspect of male functioning, but then they ask questions and are grateful for the honesty of my responses. Sometimes, it’s the partner who suggests gently that the patient think about what I just said and who talks for the man who, in the moment, is speechless after hearing the consequences of what he thought was a slam dunk in curing his cancer. Some couples tell me forcefully that this part of their life has been over for years, due to menopause or long-standing erectile dysfunction, and I see regret float across one or both of their faces in the silence.

This conversation I have with men almost every day in my office is never easy. I see men at their most vulnerable, facing a challenge with little preparation for what is to come, with the memory of fathers or friends who went through this with secrecy and half truths about life after treatment. I always end the appointment feeling humbled that I was able to educate and support, even when I also complicated what the man thought was a simple decision. I feel grateful that as a woman, I am privy to some of the inner life of being a man, and this small window into that world is enlightening to me. And I always end our discussion with these words: “In six months time, when you are fully recovered from whatever treatment you choose, I would rather you come to my door and tell me that I scared you with my frankness, and that none of what I said ‘could happen,’ did happen, than you come to my door and ask me why I didn’t tell you about something, because if I had, your decision would have been different.” And that is why I do what I do, and say what I say. It’s that simple.

Editorial Comment: The “New” Prostate Cancer InfoLink would particularly like to draw attention to Dr. Katz’s point that selecting a treatment for prostate cancer is not about “choosing survival over sex.” Rather it is all about “coming to terms with an altered way of being a man.” This is a crucial insight that is rarely emphasized for newly diagnosed prostate cancer patients and their family members.

17 Responses

  1. Great contribution! Every urologist and every urology practice should read this. I find that even male physicians are uncomfortable talking with patients and spouses about sexual issues and they all “lie” about outcomes for treatment for prostate cancer.

  2. Wow, that was excellent. I wish every prostate cancer patient got that “talk”. …

  3. I, together with my wife, was fortunate to be one of Dr. Katz’s patients. Her approach to us in 2005 was exactly like what she describes and was very helpful. While I do not remember her saying the exact phrase “coming to terms with an altered way of being a man”, that is exactly what it was, and is, all about. My “coming to terms” took about 6 years, during which I had surgery to install a penile implant and later a male sling, both of which made a big difference. This is an excellent article, one that I hope is made widely available.

  4. I guess it takes a woman to explain the issues that men must deal with when discussing prostate cancer. How ironic.

  5. This made me so, so sad. I give her a lot of credit for discussing this with patients. I knew what the outcome would be for my husband and I, although he didn’t seem to care. It literally wrecked my life; he just seems happy to be alive. Thank you for reprinting this.

  6. Well, Elucid, those are the old school folks she is talking with/about. Not someone born after 1960.

    Clara, sorry for your pain. I wish you won the argument. For us, we are 2 years into an AS regimen, and not looking back. I am living now. Full speed ahead.

  7. Walt:

    I suspect there are plenty of men born after 1960 who would benefit from the way Dr. Katz presents this information (as opposed to the way their male doctors, also born after 1960, still present what they think is the important information).


  8. Sitemaster, my reference was, hopefully, that men born after 1960 are not tight-asses about talking about sexuality. In her story, Dr. Katz details some folks who have no comfort level with that. I assumed those were older folks (I envisioned a Korean War-era Vet, or the like, etc.)

    I mean, can anyone 54 or younger not be able to talk about sex with a doctor, with their wife present? I should hope not. That was my reference point with that. :-)

  9. It sounds like an improvement in care when honest, full discussions can be had about the potential side effects of primary treatment of prostate cancer (PCa) before treatment is initiated.

    If it were me in those shoes and I had decided on RP, I think it would be more reassuring to hear facts, such as: (1) I had a thorough, state of the art pre-surgery workup telling me why I needed primary treatment and why it likely could cure my prostate cancer; (2) I was having RP surgery with a highly experienced RARP surgeon with a proven track record of low incidence of post-op side effects and PSMs .

    Let’s hope that time will bring improvements in primary treatment for PCa such that side effects like impotence will be a thing of the past. In the case of RP, whether this breakthrough comes from from technology advancements and/or improvements in surgeons’ skills remains to be seen. In any case, it would be welcomed, so primary treatment does not have to seem a choice between “sex or death”.

  10. Dear Walt:

    I hate to rain on your parade, but I think you might be amazed about what some people still can’t talk about … with their doctor, their wife, or anyone else.

  11. FOR SURE. And therein lies the problem.

  12. That’s a shame.

  13. Mike,

    That is a great point, and is the elephant in the room. Women are so much more evolved in the discussion of their heath than men. Then again, so many males have their brains below their best that rational thought seems to be compromised when it comes to prostate cancer.

  14. Mike is entirely right. I have counseled many men who were newly diagnosed on referral from friends. I always bring up the subject of sexual function and the impact of any treatment. Usually greeted by an uncomfortable response. I always ask them to call after they have decided on their course of treatment (or none). They rarely call and if they do they are very unlikely to want to discuss lifestyle impacts.

    I have belonged to a leaderless Men’s Group for almost 25 years. Much easier to talk there than in the local prostate cancer support group. I am the only one who is impotent as a direct result of prostate cancer treatment but there are a whole lot in the group who are dealing with it, some from age and some from medical treatments.

  15. I’ve been to two urologists. The first, who diagnosed the cancer, never asked anything about my sexual function and never touched on likely consequences of treatment. The second asked about sexual function, but again had nothing to say about the sexual or emotional impact of treatment on my partner and me. I’m on active surveillance and struggling with the usual uncertainties.

    By the way, sitemaster, this web site is an incredible resource. The field is in great flux, with many long-term studies coming to fruition and enormous differences in the global medical community regarding screening and treatment. And, many patients would never know about these controversial issues without this forum.

    Thank you.

  16. I found this information very useful. I am certain that my doctor or nurse would not have explained half of what you have explained so well. I have high PSA and have opted for no further action.

  17. I can’t tell you how sad this article made me. It’s like living it all over again … although that’s true every single day.

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