Sex or death: The difficult decisions of prostate cancer treatment

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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.

Anne Katz is a certified sexually counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared.  She can be reached on her self-titled site, Dr. Anne Katz.

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