Addressing “Sex vs. Death” Perceptions in Prostate Cancer Treatment

Addressing “Sex vs. Death” Perceptions in Prostate Cancer Treatment

Anne Katz, PhD, RN, FAAN

@DrAnneKatz
Sep 02, 2014 12:41 PM

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.


This commentary won the 2015 APEX Award in the Social Media – Best Single Blog Post category

 

 

Comments

Don S. Dizon, MD, FACP

Sep, 03 2014 7:33 PM

Dear Anne,

What a brilliant column. I appreciate the frankness and the approach to such a sensitive subject. It is a similar conversation with women isn't it? The whole notion that after cancer, it is a choice of sex or life. So often, I hear, "well- at least I'm alive". Many of us talk of quality of life as an endpoint in cancer therapy, but many of us only have the most general notion of what quality of life actually entails- not surprisng since it is also so individual. But, hopefully your column will open more people's eyes to the importance that sexuality, intimacy, and intercourse are to some (if not many) of our patients. After all, the life we help, should remain a life worth living. Perhaps that is the best definition any of us can have re: quality of life. DSD

Kelly J. Cooke, DO

Sep, 04 2014 12:03 PM

Anne, what a powerful commentary. I will share with our nurse navigators and palliative care staff. I couldn't agree more with your closing comments. Thank you for sharing.

James M. Sinclair, MD

Sep, 04 2014 7:50 PM

I have two comments. First, thanks for the statement "I keep in mind that attitudes and beleifs trump knowledge". I can't tell you how often that holds true in my practice. The second comment covers both prostate cancer and breast cancer. I cringe with life vs sex dilemna. Is early low gleason prostate cancer and DCIS untreated equivalent to death? I don't think so and I beleive it is our duty to educate our patients. I fear there are many women and men left without meaningful sex lives because of over treatment.

Anne Katz, PhD, RN, FAAN

Sep, 05 2014 7:59 AM

Don and James - thanks for your comments (Kelly too!). 

The Western notion that cancar has to eradicated completely - and the same day as diagnosis - dominates the behaviors of so many of my patients - and no doubt yours too. And I think that some health care providers play right into that notion too.
What we do here is have the patient and his partner come and see me a week after he receives his diagnosis. That allows the dust to settle somewhat, and provides him some time to see that (a) he hasn't keeled over immediately; and (b) to think and read and search Dr. Google etc. I find that many men are able to HEAR what I am saying much better with a little distance. Overtreatment in prostate cancer is increasingly being recognized but perhaps the same in DCIS is lagging behind a bit.

Darryl Mitteldorf, LCSW

Sep, 09 2014 10:25 AM

Clinicians should be aware of the psycho-social implications that are unique to gay and bisexual men presenting a newly diagnosed prostate cancer.  The presentation and understanding of self regarding erectile functioning is different for men who enjoy sex with men, then it is for the predominantly heterosexual patient, based on self reporting of attitudes in the Malecare Prostate Cancer support group network.  Clinicans are encouraged to ask their patients if they enjoy sex with men, and then begin their consultation.

Anne Katz, PhD, RN, FAAN

Sep, 09 2014 10:29 AM

Agreed and heard! I intend sharing some experiences of working with gay and lesbian patients in future blog posts.

A useful resource is What Every Gay Man Needs to Know about Prostate Cancer: The Essential Guide to diagnosis, treatment, and Recovery. G. Perlman (Ed) published by Magnus Books (2013).

L. Michael Glodé, MD, FACP, FASCO

Sep, 12 2014 6:38 PM

Thanks Anne for your very thoughtful commentary and kicking off this discussion. I, too, see at least 2-3 patients each week with newly diagnosed prostate cancer who are looking for answers, and generally I have the same discussion you outline which is excellent. However, I have noticed a few other things in the dynamics of the discussion which may deserve highlighting. First, I find that VERY often, the patient is anxious/saddened by the news about the change in sexual function he will face, while his wife, particularly if the couple are in the same age bracket and have been married for a long time, will say something to the effect that "All I care about is having 'George' around for as long as possible". This can play into a slanted discussion of active surveillance that may not fully reflect the fact that 'George" himself would like to both be around AND be sexually active and unaffected by any treatment. 

A second, related observation I have noted is how often the spouse will favor surgery over radiation. There seems to be a societal bias in favor of "just want it out" that is not supported by the data. Often it would seem that treatment at any cost (to sexual function, continence, etc.) as quickly as possible (as you noted in your follow-on commentary) is a desirable way to just get on with life among some women who may not fully understand the psychological role that being sexually active plays in their husband's life. However.... the guys who have a thoughtful and supportive spouse (significant other, partner, etc.) who shows up for the discussion and express their love for their husband and willingness to deal with their next life experience together in this realm are fortunate indeed and in these cases, make the consultation much easier. 

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