Reposted from Greater Boston Urology.
Les’s cancer was localized, meaning it was contained within the prostate gland itself. He didn’t need further treatment for prostate cancer after the surgery, only regular monitoring of his PSA.
Q: So let’s get right to it: You were dealing with incontinence after your radical prostatectomy?
Les: The thing about any kind of prostate procedure is you’ve got to deal with incontinence. This was a big issue for me for a while. I had purchased padded undergarments—a whole case of them, because I didn’t know how long this was going to last.
Men wonder why this particular side effect happens. The prostate gland is the primary organ for controlling urinary flow in normal physiology. When you are rising frequently during the night, and/or having difficulty starting urination, these are signs that the prostate is beginning to grow in size and interfere with this specific function. Every man’s prostate gets larger with age; it does not necessarily have anything to do with having cancer. It is a separate reality.
So if we remove the prostate, what is starting stopping urinary flow? The answer is nothing! If there is urine in the bladder (and there always is), it will flow right through to the outside. Men without a prostate need another way to gain control over urination.
Women don’t have a prostate. What do they use? Kegel muscles!
[Editor’s note: From Wikipedia: “Kegel exercise, also known as pelvic floor exercise, consists of repeatedly contracting and relaxing the muscles that form part of the pelvic floor, now sometimes colloquially referred to as the “Kegel muscles.” The exercise needs to be performed multiple times each day, for several minutes at a time, for one to three months, to begin to have an effect. Exercises are usually done to reduce urinary stress incontinence (especially after childbirth) and reduce premature ejaculatory occurrences in men, as well as to increase the size and intensity of erections. Several tools exist to help with these exercises, although various studies debate the relative effectiveness of different tools versus traditional exercises.”]
Basically, it took five months of Kegel exercises for me to get to the point where I didn’t need the padded undergarments anymore. That’s how wet you can get from incontinence. It takes a long time for all of these functions to mend together, to really heal. Then, there was a conversion to pads, and probably around six to eight months after the surgery, I was back to standard underwear and under control. Dr. Donovan constantly reminded me: “You got to do your Kegel exercises.”
So incontinence was a big issue for a while, but all is well now.
[Editor’s note: There are many ways to deal with urinary incontinence after prostate cancer treatment. Here’s what you need to know.]
Q: Now, let’s discuss another side effect. You were dealing with erectile dysfunction as well, right?
Les: Yes. The reality hit that an erection wasn’t going to happen. That was depressing, too. And I was kind of angry about it honestly. I was mad.
I went in to see Dr. Donovan for a follow-up, probably around three months after the surgery, and told him what was happening – or more accurately, what was NOT happening. He said, “Well, you know it can take up to two years for those nerves to grow back.” I said, “Really? That’s a long time.” He said, “I know, I know, but it can take that long.” I said, “Well, what do we do in the meantime?”
That’s when I learned about what I call tri mixes, which is three different medications that are combined and injected into the penis with a needle to create an erection. I remember saying, “What are you talking about? Don’t you have something by mouth—a pill or anything?”
He said pills wouldn’t work, in my case. But he said the injections would. He showed me how to correctly administer and use these medications. He literally did it in the office, proved to me that it worked, and wrote me the prescription.
Now here’s the thing: this tri mix has to be made at a compound pharmacy, it’s mailed to you, it has to be refrigerated, it only lasts so long, and it’s expensive. But you sort of get to the point where you think, “Well, if this is what I have to do, then that’s what I’m going to do.”
Q: Did you discuss any of this with your wife?
Les: Absolutely – everything. I went home and told her what the doctor was recommending and she asked how she could help. I said, “I don’t know.” The needle part isn’t a big deal, candidly. It sounds like it should be, but it really wasn’t because it’s a tiny needle, almost like a diabetic needle, 22-gauge or something. It’s nothing.
The part that was a problem was that this stuff lasts for four hours, which means you have some fun for however long—half hour, 45 minutes—and now you’ve got another three hours before your medication-induced erection dissipates.
That three plus hour window is not fun – your penis hurts. It’s the nature of this medication. And there’s nothing you can do about it. They can adjust the way these three medications are combined to try to reduce the pain, because there’s one drug out of the three that really causes pain. But even after the adjustments, it was still a challenge. Not to mention the injections kill the mood. It’s not totally spontaneous. You’ve got to get the medication, get the needle, alcohol, prep, and inject it.
While the main benefit was that I could have sex with my wife again, there were many challenges and negatives related to this medication, at least for me. I used it for about 18 months.
Q: Then what happened?
Les: By this point, I’m employed by GBU. I joined in October 2014. Dr. Michael Curran, who is our CEO—he and I meet weekly to review administrative issues and every now and then he would ask me how I was doing in relation to some of these challenges. I told him that I was using the tri mix, that it worked, but it was painful and wasn’t very spontaneous. And he said to me, “Just get the prosthesis.” I was surprised. I wasn’t quite expecting that. But after we talked some more, I decided to seriously consider the prosthesis.
Q: A prosthesis?
Les: Yes, a penile prosthesis, which is an implant that has three parts. It has two cylinders that essentially go into the channels where the blood flow goes when you get an erection. There’s a pump mechanism that goes in your scrotum so you can access it. Then, there’s a reservoir with sterile water that goes in your abdomen. When you want an erection, you literally pump this thing up and voila: it works! When you’re done, there is a pressure release button and all the water goes back into the reservoir and everything goes back down. Very ingenious.
I went home and talked to my wife about it and she said, “It’s completely up to you. I think it’s a great idea, but I don’t want to put you through anymore surgery if you don’t want to go through it.”
I said, “I don’t see this as a big deal. I think if it changes our lives the way I think it’s going to, I want to move forward.”
Long story short, I got the prosthesis. And it definitely changed my life—for the better. You go back to normal so to speak. It is quick, easy, functional, effective, and works like a charm. I don’t know how else to say it. This thing’s great.