Brian M was diagnosed with prostate cancer in 2011.
He discusses with Prostatepedia his own struggles with erectile dysfunction after surgery and offers some thoughts for men in similar situations.
How did you find out that you had prostate cancer?
Brian M: I had my first biopsy, believe it or not, on September 11, 2001. I was in the waiting room when I saw the first tower come down. The second tower was struck obviously shortly thereafter. Sometime between when I saw the first tower go down and when I was laying on my side for the biopsy, my urologist who was performing the biopsy found out that his son, who worked at the World Trade Center, had been unexpectedly delayed and didn’t make it to work on time. Obviously, none of us knew what the hell was going on at the time, except that this terrible thing had happened. It was an interesting start to this whole process.
My family doctor must have seen my PSA rising, although I think back then it was still only three or four, something like that. I don’t remember the numbers. For whatever reason, my doctor sent me over to the urologist who said, “We probably ought to do a biopsy.” That biopsy was negative. All 12 cores. But I also had a very large prostate.
I was on Proscar (finasteride) for BPH for a number of years. I then switched to Avodart (dutasteride). I visited my urologist once a year. In 2011, I needed a refill. They said, “We can’t prescribe this. You need to come in.” They did my PSA and it turned out to be about 13. They said, “We’ve got to do another biopsy.”
I put that off. It was summertime and my daughter was getting married in November. I had a suspicion what was going on, so I said, “Let’s put it off until after my daughter’s wedding and then we’ll get the biopsy.”
Out of 12 cores, six had cancer. We now know it was probably on one side. I had suspected I had cancer, but that’s when I had discovered for sure. I had to make some decisions.
That particular urology group—and I don’t really mean this disrespectfully —is almost a wholesale urology. It’s the hugest group in the area and it’s a business. Of course, all medicine is a business these days. But I happened to go to a prostate cancer support group. One guy there said, “You might try this other urologist; he’s really good and takes a lot of time with you.”
That appealed to me because with this other group everything seemed a bit rushed. I made an appointment. The urologist was able to see me within a couple of days. He had a solo practice and was true to this fellow’s recommendation. He took a lot of time explaining everything and going through it with my wife and me.
We scheduled the surgery. I’m probably one of the last people to have an open prostatectomy because everybody is doing robotic surgery now. He was masterful. Everything went fine; the surgery itself went fine.
Did both urologists—the one in the large group practice and the solo practitioner —discuss side effects with you? What were those conversations like?
Brian M: To be fair to the large urology group, they gave me the diagnosis but we didn’t have that next conversation about scheduling surgery. It may well have been that they would have gone into more depth had we done that.
I just wasn’t impressed with that urologist. He just looked almost embarrassed to have to tell me about my cancer. I guess that’s never a great conversation to have with anyone.
The solo urologist was wonderful, though. My wife was there. I came with a pad full of questions. He answered them, did not mislead, did not promise any results that he couldn’t deliver—particularly, retrospectively. We felt really good about meeting with him. He didn’t pressure us. He said, “You’ve still got some time to think about it. Go talk to somebody else if you want.”
He didn’t rush you.
Brian M: He explained the possible side effects that I, even with all my so-called reading as a layman, didn’t realize. It was encouraging when he explained that even without an erection, one could have an orgasm. That was a little bit of a consolation.
He didn’t go into details about penile rehab: what is involved, what is the best way, etc. But this was six or seven years ago. I don’t know if it was discussed quite as much as it seems to be now in some of the online forums and blogs.
What was your experience with erectile dysfunction after surgery? Did your urologist give you any guidance about how to manage it?
Brian M: I don’t think he did. In a matter-of-fact way, we talked about Viagra (sildenafil). I don’t remember him saying use it or lose it, which is the big term now in penile rehab.
I know now that some doctors are even recommending that penile rehab start before surgery. For example, taking low-dose Cialis (tadalafil) or Viagra (sildenafil) before. I’m not sure exactly why. Certainly afterward, I think they’re combining masturbation with taking a low dose of either drug at night to keep the blood circulating. As informative and as willing to answer any questions as he was, I don’t recall him going into detail about that.
Did you feel comfortable talking to him about ED or were you still focused on getting your cancer under control?
Brian M: I certainly did feel comfortable. We went back every three months for my PSA and I’d get a prescription for Viagra (sildenafil).
The incontinence was minimal after the catheter came out. I still have a little bit. Stress incontinence is the main thing. I hear men talking about constant dribbling and whatnot, and luckily, I’ve never had that. I do have the stress incontinence, which has gotten better. Of course, during sexual activities—during ejaculation— for a while, I had to be careful to wear a condom because urine would come out. I seem to have gotten that under control, but that was certainly a side effect immediately afterward.
Pretty soon after that catheter came out, I began to take penile rehab seriously.
My wife and I would joke about it. Honey, it’s for medical purposes. She’s a good egg. It’s hard to believe I’m saying that, but we had fun with it. It’s obviously a laughable situation. Within a month, I was able to have an orgasm. It was painful. I remember thinking, “Have I done this too soon? Have I hurt myself?” The second time there was a little twinge of pain. After that, no more pain.
I did not have a teenage erection by any means, even with Viagra (sildenafil). But I was able to have orgasms.
For whatever reason, and I attribute it to the fact that I was extra sensitive after surgery, the orgasm was more incredible than before.
It was stunning. I was amazed. My wife said I had never reacted that way before. Maybe I was just so grateful that something was happening.
Did function just come back after that initial painful episode a month after surgery?
Brian M: Five months after the surgery, in August, we went on vacation. We had a great time. For whatever reason, on that vacation, I got a usable erection for the first time. It had been getting full and pleasurable, but that was the first time I could get an erection adequate for intercourse.
But did I ever get back to normal? Here’s how I compare it. I’m not sure that a woman can appreciate this; I’d be curious if other men have this same reaction.
Back in the day, you just started daydreaming or fantasizing and then you had an erection. I don’t know that I can get a spontaneous erection like that anymore, just from fantasizing. They say your brain is the number one sex organ anyway.
I said this to a new fellow at my support group last night: “No matter how much you tug at it, you’ve got to have some fantasy that makes you horny.” I’m not being very eloquent here.
There are two nerves that are necessary for erections. I refer to them as the “hydraulics.” If the surgeon must remove both nerves, then a man cannot have an erection naturally. He must use shots or have an implant. But if at least one nerve can be saved, then what is going on in the brain—the lustful thoughts— can transmit the signals to the hydraulic nerve that causes blood to flow into the penis and cause an erection. The nerves controlling orgasm—the pleasure nerves– are rarely damaged by the surgery.
If there are no erotic or arousing thoughts occurring in the brain, it is very difficult to achieve an erection just from pure physical manipulation. At least that’s my situation post-surgery.
Then again, I’m 66. Maybe it wouldn’t happen now anyway. That’s the other factor. How much of this is age-related? Would it be like this anyway without the surgery? I don’t know.
After the surgery, you took Viagra (sildenafil) at night?
Brian M: Almost every night. I would cut them into fourths. I bought them from Canada because they’re so much cheaper from Canadian pharmacies.
What role did your support group play while you were struggling with ED after surgery? Were you able to talk openly to the men in the group about your struggles?
Brian M: Some of what you’re asking just happened to come up in last night’s meeting. The group is starting to feel comfortable with each other. Even though we have new guys come in, the new guys are as scared as we were at first.
I made the comment last night that most women probably assume that men spend a lot of time talking about their genitals and their sex life, but we really don’t. It’s awkward. Of course, what is even more awkward are our feelings about what’s happening. We never talk about our feelings. Those fears about what it means to be a man are hard for guys to talk about. In the group, we seem to be breaking through in terms of what men are willing to say and ask.
I seem to be the one who always brings up the sex questions and issues. Maybe that’s because I keep thinking my days are numbered, so I want to get as much as I can. I don’t know why I’m so interested in it, but I am afraid of what the loss of sexual intimacy will mean.
One fellow last month was having terrible incontinence. We said, “Well, you’re only two months out. Hold on, hold on.” Last night he came in and said, “It dried up really well.” The new guy who was sitting across the way hadn’t even had the surgery yet, but could hear him say, “Most people get some form of erectile function back, even though there are obviously bad stories.”
It seems like a lot of guys come in absolutely bewildered. A couple other guys, like me, spend a lot of time on UsToo or Prostatepedia trying to get as much information as possible. More men come into the group without information than those who come in with information.
I think they’re getting a degree of a comfort level listening to us old-timers. I tell them don’t jump, don’t rush. You’ve got time to think about it. It always breaks the ice when we end up sheepishly laughing as we talk about how to rehabilitate your penis. It’s just the nature of the beast, I guess.
It’s like any other part of the body though. You wouldn’t feel weird talking about rehabilitating your knee after surgery.
Brian M: If you think about the visuals of that conversation, it’s not quite like any other part of the body. We’ve probably all been at a party or other social situation where someone was describing the rehab they were going through for a knee or hip replacement. And as you’re listening to them describe the exercises involved in their rehab, you’re probably visualizing what they were going through.
Now, picture that same conversation if a man were asked how he’s doing after prostate surgery: “So, Joe, they got you doing any rehab after your surgery?” Joe’s probably got to refill his drink at that point.
Outside of my support group, I can’t think of many opportunities to get into a discussion of one’s successes or failures at masturbation. But then, there are not usually a lot of cocktail conversations about hemorrhoid surgery either which is perfectly understandable. Again, just reinforcing the benefits of a support group, I guess.
Well, erectile dysfunction cuts to the chase of how you feel about who you are as a man or what it means to be a man.
Brian M: Yes, it does.
And that is different for each person. Besides, there’s a cultural idea of what that means.
Brian M: Right. And not all of it wonderful, actually. That may be part of it. Plenty of women out there probably say you’re always thinking about sex anyway.
My wife has been wonderful about it. We’ve always been innovative in having fun. She’s in that difficult position of wanting to reassure me that it’s okay and yet not wanting to act like it’s okay if I lose my ability or libido. I’m trying to figure out a way to make her feel like it’s okay to say it’s okay. I think that’s an issue for women: they want to say okay if you can’t perform. Well, we don’t want it to be okay that we can’t perform.
If it’s okay, then maybe it doesn’t matter to her.
Brian M: That’s the dilemma. We men fantasize that our women can’t stop thinking about our physical attributes and sexual prowess. (Note I said fantasize). We’d like to imagine they think about our genitals as much as we think about theirs. So there are mixed emotions when our wives say: “It’s ok, honey, I don’t need to have intercourse to feel satisfied.” They are trying to be supportive by suggesting our penises are not that important to them. That’s a difficult line to walk for them—and for us.
Do you have any advice for other men about dealing with ED?
Brian M: You’ve got to start talking about it. You’ve got to be prepared to feel embarrassed for a bit and then stop being embarrassed about it. How do you advise someone to take penile rehab seriously? You almost got to figure out a joking way to do it. You felt guilty about masturbation when you were a kid, but you don’t have to feel guilty about it anymore. In fact, it’s recommended medically for you.
Brian M: Doctor’s orders, that’s right. I do believe Use-it-or-lose-it is a real phenomenon. There’s just so much involved. It’s not just playing with yourself. You’ve got to somehow get your mind in a place where whatever those thoughts are that send the signal down those nerves. You’ve got to get your mind involved in a way that you’re not used to having to think about. Now you have to think about it: I have to go masturbate. If you want it to get erect, you need to have some thoughts that would cause that to happen.
What would you say to a man who says he feels like he has to put too much effort into it? That this just isn’t worth it?
Brian M: I’m not sure I understand. I can’t picture it not being worth it. When has an orgasm not been worth it? It’s an orgasm for God’s sake.
There may be a whole lot of other baggage involved. I have had periods, believe it or not, of anxiety or depression. I’m a lawyer. Back in the day when I was preparing for trial, I would get so focused and anxious. Sex was the last thing on my mind.
All those emotional things that play into it—if you’re on medication, if you have diabetes, if you have a heart condition. There are a lot of other things that enter into someone saying, “I’m not interested in sex at the moment.” But saying, “I just don’t care anymore?” I can’t relate to that.
Ask me next year when I’m on hormones. Maybe I’ll have a better answer for you.
You’ll remember what you once had. Maybe you would miss it.
Brian M: I’m hoping I remember it. I have read that everything is still sensitive and you can still have orgasms after being on hormones. What I keep saying to my wife is that she’s going to have to be the instigator. You won’t be desired. Apparently, I lose all of that. I’ll appreciate you, but I may not desire you. That’s not something I’m looking forward to— that change in roles.
I think you’re right. Many women are used to not being the instigator.
Brian M: I think women grow up being an object of desire— sometimes in a nice way and sometimes in a not nice way. Before you all go out, you pretty yourselves up. We don’t necessarily do that.
Frankly, I never even thought about all this until I started dealing with what it might be like to not have a libido. From what I’m reading, those emotions are just not there. I’m scared of it happening. I want her to understand that it might be a difference for her, too. When she walks out of the shower, I may not care.
If you talk about it openly and have a plan for having to deal with it, then it won’t be as much of an issue.
Brian M: That’s what we’re trying to do. I’m trying to forward her the articles I’m reading.
Does she read them?
Brian M: I think she does. She doesn’t necessarily say, “I read the one you sent this morning,” but we talk about it. Right now she doesn’t want me to worry. We have time to worry.
I’m surprised how much of what we just talked about also came up in my support group last night. For some reason, we really opened up and started talking about our feelings more than we had before.
There was a period when I was not going regularly. But I find myself wanting to go regularly now for two reasons. One, as things are starting to happen to me I get some insights from other people.
Also, some men have been coming for 10 years. They’re just giving back now. I think I ought to do that, too. Even if I don’t need to be there for my own personal reasons, inevitably, there’s a new guy who’s just got this look on his face. It is a good feeling to be able to help fill in the gaps for him without trying to scare him, but by being realistic.