I had just started the sexual health clinic at Massachusetts General Hospital (MGH) when I was approached to meet with a group of prostate cancer survivors. I was hesitant at first — my interests were in female cancer survivors who had experienced sexual dysfunction. This was partly because I had assumed men had an easier time accessing information on sexual-related side effects of treatment. Despite my reluctance, I agreed to meet with them.

I had seen some men during my clinic — often, it was in the context of the man being the partner of a female patient, but more than a handful of times, these men were also cancer survivors, usually of prostate or colorectal cancer. I made sure I had the most relevant information with me before I met with these men as it related to erectile dysfunction, orgasmic issues, and ejaculation issues.

When I arrived at the support group, there were maybe 15 men present. They were in various stages of treatment — some were just diagnosed and contemplating which treatment they would choose, others had completed treatment recently, and others were in remission for over a year. I talked generally about the issues of male sexual function after cancer treatment, with much of my emphasis on erectile dysfunction as a consequence of prostate cancer treatment. I reviewed some of the therapeutic options that spanned the medical (e.g., phosphodiesterase 5 inhibitors) to more invasive options (including penile implants).

We broke for questions then, and one gentleman shot his hand up straight and asked: “I know about these options. But, what about intimacy?”

I stopped to think about that and found I did not have a good answer. Indeed, I had not been prepared to discuss this. In an attempt to buy myself some time, I asked the men around the room what they thought of when they heard the term, “intimacy.”

“It’s holding my wife after we’ve had sex,” said one.

“It’s the act of sex itself — that’s intimacy to me,” said another.

After a relatively awkward few minutes of silence when we just looked at each other, I decided to address the man who had asked the question. “What do you mean by intimacy?”

He looked around the room, hesitant at first, but then he spoke. “Intimacy is holding my wife’s hand. It’s being able to kiss her and not feel shy or embarrassed that I cannot have an erection. It’s laying in bed, just holding her. I think it’s not about sex, at least for me.”

It dawned on me that my approach to male sexual health after cancer had been relatively myopic. I had done so much research about the physical aspects of male sexuality — and I will admit, I exclusively focused on physiologic issues — erectile dysfunction, ejaculation, and orgasm. I had not really given much thought about intimacy, relationships, and the psycho-emotional aspects of this.

I have since realized that intimacy is an important part of sexual health, for both women and men. It’s about connectedness, not sex — a sharing of a deeper bond that transcends sexual activity. However, while it was a standard part of my approach to female sexual health counselling, it had not been a part of it for men. In fact, there is a dearth of literature on the topic of what impact cancer has on intimacy in men, though some data suggest that attention to intimacy is important.

This is best illustrated by one of my favorite papers in sexual health, written by Perz and colleagues. In it, they reference work by Hordern, which showed that the literature has narrowly evaluated sexual dysfunction and cancer, with a limited view to penis-vaginal intercourse, what McPhilips referred to as the “coital imperative.” To better understand the concepts of sex and intimacy, Perz interviewed 44 people with cancer (21 men), 35 partners of a person with cancer (17 men), and 37 oncology health professionals (interestingly, only five of whom were male). They go on to describe a “three-factor” solution that conceptually encompassed perspectives on intimacy and sexuality:

• Factor 1 was the importance of communication, emphasizing the importance of acknowledging that there are a range of sexual and intimate practices available to patients and their partners post-cancer
• Factor 2 involved the normalization of the sexual experience across the journey with cancer, requiring re-negotiation of what these mean to patients and their partners, and seeking ways to evolve alternative sexual practices
• Factor 3 emphasized the importance of intimacy, even for patients in whom sex may not be “wanted, desired, or even possible”

Reading this paper, I saw the views of this one participant reflected in Factor 3, with an emphasis that sexual intimacy goes beyond the ability to have an erection or vaginal intercourse. It had to do with lingering hugs, touching, and communication. Indeed, the complex interplay between cancer and sex was also borne out in descriptions around Factor 3, particularly as it related to the importance of survival and recovery from cancer, which, for some people, may be more important than intercourse.

Ultimately, this experience with men and prostate cancer, coupled with the lack of data about intimacy right now, made me realize how much work really does need to be done for all men experiencing issues with sexual health after cancer. It is not enough to offer a pill, an injection, a vacuum pump. Attention to intimacy is important, and doing so may help bring much needed relief to men, as much as it can for women.

Deep thanks to my fellow ASCO Connection Columnist and sexual health advocate Dr. Anne Katz (@drannekatz) for reviewing this column.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.