When I was first diagnosed with prostate cancer in December of 2017, I was overwhelmed with fear and embarrassment related to prostate cancer treatment. I can remember the doctor going over each treatment option in detail, but there just did not seem to be a good option. I remember thinking that there had to be a treatment plan available that could kill this cancer and not leave me with so many side effects. We did discuss active surveillance which means closely monitoring the progression of the cancer which required frequent blood tests and annual biopsies. However, because of the aggressiveness of my cancer, active surveillance was not a great option. In the end, I chose robotic surgery as my primary treatment plan. Afterall, most treatment plans involved some risk of incontinence and erectile dysfunction. The deciding factor was my age and life expectancy. I was 43 at diagnosis, and if I chose radiation, then had a recurrence later in life, removal of the prostate was not much of an option. However, if I had surgery and later needed radiation, then I could have secondary treatment options.
I never had second thoughts about the need for surgery but spent much of my time leading up to the procedure consumed by the thought of how the removal of my prostate would affect the quality of my life. My main concerns were incontinence and erectile dysfunction. I have two boys and did not plan to add more children to the family. If having biological children is a concern, then storing semen is something else to consider. I knew that after surgery, I would not ejaculate at orgasm anymore, but kids were not a factor in my decision. The fact that I might have to be in an adult diaper and that I might not be able to have sex were certainly consuming my thoughts during these initial days.
My preoccupation with the side effects of treatment was not unlike other men that I had talked to facing this disease. Although I do think that being a gay man and only 43 at the time of diagnosis made my perspective a bit different. At an early age I had to confront what being a gay man would mean. Being raised in the conservative south was another factor in how I saw myself in my adolescent years. What came out of that experience was an inherent link between my sexuality and my identity. Now as a prostate cancer patient, the threat to my sexuality was making me spin out of control.
I am very fortunate to be in a relationship for the last 25 years with a great man. I never questioned his commitment to me even as we faced down this disease. He was certain to reassure me that the only thing that concerned him was me getting better. Together we would confront and conquer whatever challenges lay ahead. He said all the right things and was there to support me every step of the way. Privately, however, there was not a day that passed where I did not stress over what life after surgery might mean and how it could impact our relationship long-term.
My first concern was how the erectile dysfunction would impact the relationship with my husband. Little did I know at the time, it was the incontinence that I should have been worried about. After having the catheter removed, I struggled with incontinence. I can remember the family getting ready to go out for dinner and I was still in a full adult diaper. After showering and getting dressed to leave the house, I had urinary leakage with every step. I could not take it anymore. That night I refused to leave the house. In fact, I went back to bed and pulled the sheet over my face. I was not ready to face this new reality. As you can imagine, sex was the last thing on my mind. One thing for sure was that I no longer felt sexy.
Within a few months I was able to regain urinary control with persistence. I created a routine of performing at least 100 Kegels a day which helped to build the much-needed muscle control. I transitioned from adult diapers to a heavier pad, then eventually moved to the light pad. Most days I was 100% dry with full continence. Erections were another story. I was still struggling to achieve an erection. It was just as much mental as it was physical. I no longer felt sexy and I struggled with what erectile dysfunction meant for a gay man. Not sure if you know, but erections are pretty important for gay culture. What would it mean for me, a gay man, if I could not achieve an erection again?
Now you might be reading this as a straight man and be thinking that you too want to have sex again and how is this different than what I am facing. Fundamentally it is the same, but I have found that our perspectives might be a bit different. For example, I was talking to a straight prostate cancer patient about this very topic a few months back. When we got on the topic of sex, he commented that his wife was not concerned about erectile dysfunction at all. She was going through menopause and quite honestly welcomed the break from the expectation of having sex. As a 43 year-old gay man, I can tell you that neither my husband nor I was welcoming this break.
There are some up-sides to being gay with prostate cancer. One thing that being gay helped with is the fact that you have to be open minded about sex. First there was the daily masturbation, or as I called it “physical therapy.” My doctor felt strongly that it was important to do “physical therapy” daily even without the ability to achieve an erection. The intent was to remind the penis that sex was part of the overall organ function. Like any muscle, you have to exercise it to keep it strong. If you don’t already know, you can still achieve an orgasm even without achieving an erection, although let’s be honest, it is not as much fun.
After weeks of “physical therapy,” I was willing to try sex with my husband again. In the early days there was nothing. I was on the maximum dose of Sildenafil and the only thing achieved was a headache and frustration. I went into every encounter preoccupied with the worry of “will I be able to do it” today. There were some funny things (at least to us) that happened along the way. Occasionally there is urinary leakage which luckily my husband laughed off. In the end we got through it all. After about six months we were back to having sex almost daily. We had a minor setback when I had to go back in for radiation and hormone deprivation therapy at the end of last year; but, we still managed to continue having sex. This was no small accomplishment considering the fact that the side effect of my Lupron shot was zero sex drive.
At the end of this, all prostate cancer patients face similar challenges. The fact that other prostate cancer survivors are not as fortunate is not lost on me. Nor is the fact that I might have to face these issues again at some point in the future. I do hope that the lessons that I have collected so far will only make me stronger if my situation changes down the road. I want to remain open to all options that would allow me to maintain the intimacy that I have today with my husband. That could mean shots, pumps, or a number of alternative treatments. They may not be “sexy” but for many prostate cancer survivors, it is reality.
So, I come back to the question of: are we less of a man because of our prostate cancer experience? Early in life I had to come to terms with the fact that I was not less of a man because I was gay. Prostate cancer made me question my manhood again but in a different way. This time as a father and husband. Much of my identity had been wrapped up in my sexuality as a gay man. What would prostate cancer mean for how I viewed myself and how I was perceived by others? I can tell you that I am not less of a man today. If anything, I am a better man now with a different perspective on this disease and my sexuality. My advice is whether you are straight, gay, bi, whatever; keep an open mind and be patient. Sex might not be the same, but it does not mean that it still can’t be fun!