The following article was originally published in the ASCO Connection magazine on September 22, 2020 (click here for the original). It was written by Anne Katz, PhD, RN, FAAN, a certified sexuality counselor at CancerCare Manitoba and nurse counselor at the Manitoba Prostate Centre. Anne Katz counsels patients with a history of cancer who are experiencing sexual and relationship challenges. She is an instructor at Athabasca University and the University of Manitoba College of Nursing, and offers insight for health care providers and consumers on the topics of illness and sexuality, as well as cancer survivorship. We thought that it would be of interest to many patients and patient educators who might not have access to the ASCO Connection.
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“How can I help you, sir?” I asked, because it was clear he wanted help. I could sense the man’s distress over the phone. His voice cracked just a little and he cleared his throat frequently. I hadn’t met him and so had no image of him in my mind, but I thought he might be tall, broad shouldered, and maybe he walked with a bit of a limp.
“Lady,” he said, and I smiled at this. I wanted to joke that I’m no lady, but you have to be careful with humor on the phone ….
“Lady, I just don’t know what to do. I’m at the end of my rope and if something isn’t done about this ….”
He went on to tell me that ever since his surgery — a radical prostatectomy 14 months ago — his penis had shrunk to such a degree that he “messed up the bathroom floor” and his wife was getting mad. He felt ashamed and guilty, but most of all he was frustrated that this had happened. And what was I going to do to help him?
He continued, “And I can’t believe I’m telling you this, you being a woman and that, but well, I’m circumcised but you wouldn’t know it to look at my … you know what. There’s so much loose skin there that it looks like a foreskin and the pee, well, it gets caught in the folds and it’s gotten infected, you know?”
I nodded but then realized that he couldn’t see me.
“Uh huh,” I said, thinking about what I could say to him when he stopped talking.
“So, I went to my doctor here and he gave me some cream but it only helped a little bit and it didn’t solve the problem. So, tell me what I can do? It’s really bad .…”
His voice went up just a little bit and he cleared his throat again.
This was not the first time I had heard this story. Penile shrinkage is not uncommon after prostate surgery, with men experiencing shrinkage in both length and girth.1 It’s not just a private matter, either; these men don’t have the length to be able to urinate in a public restroom. One man, a long-distance truck driver, had told me that suggesting he use the toilet in the stall was not helpful, as they were usually filthy. Men figure out quickly that if they sit to urinate that mostly solves the problem, but in this case the problem was the excess skin and the folds that resulted.
“And I talked to this other guy I know who had the same problem,” he continued, “and he had some sort of surgery to remove the skin and he said it hurt like stink and I’m not sure I can do that.”
I took a deep breath. That was going to be my suggestion. A urologist could remove the excess skin surgically, but I knew it was going to be painful. Would short-term pain be worth the gain? This was not my decision to make, but it likely was the only solution.
He was not done yet.
“Why didn’t they tell me this would happen? If I’d known, maybe I would have had the radiation treatment that the other doctor told me about. But no one said anything and I thought the surgery would be the best thing. You know, get rid of the problem and then I’d never have to think about it again.”
A common and perhaps intuitive belief is that once the prostate is removed, there is no risk of recurrence. I took another deep breath, knowing that what I was going to say next was only going to make things worse. But I had to tell him the facts; he deserved to know that despite the surgery, he could still have a recurrence of the cancer. In that moment I longed for the ability to look into his eyes, perhaps reach over and touch his hand, and once again I silently cursed this COVID plague that has restricted my ability to show empathy and compassion.
“Sir, there is something you need to know about that .…”
Reference: 1. Vasconcelos JS, Figueiredo RT, Nascimento FL, et al. The natural history of penile length after radical prostatectomy: a long-term prospective study. Urology. 2021;80:1293-6.
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The “New” Prostate Cancer InfoLink thanks ASCO for kindly allowing us to “re-blog” this article on this web site.
Filed under: Living with Prostate Cancer | Tagged: distress, genital, penile, shrinkage |
THE "NEW" PROSTATE CANCER INFOLINK 
Penile and genital shrinkage is one of the problematic side effects of a radical prostatectomy that men are often not well informed about by their urologist — or, if they are, the information may not really “sink in”. While the case addressed by Dr Katz above is probably on the more extreme end of the spectrum, the problems that can result from this side effect of radical prostatectomy can be highly distressing for the patient — for all sorts of reasons.
Prostate Cancer International considers that it is imperative that men are told about this potential side effect of radical prostatectomy — in detail — before they make any final decisions about having surgery. This is particularly true for men who are diagnosed with low- and very low-risk forms of prostate cancer but are seriously considering early surgical treatment, because we now know that such men can often be managed effectively and efficiently for years on active surveillance, which may defer the need for any form of treatment (surgical or otherwise) for years (and even forever in some cases).
This is such an important topic. I rarely see it addressed and no one gets told about it in advance. It is far worse if you are on ADT as well. I never had surgery but 11 years on ADT did the same thing. It took me a long time to realize what the issues were/are.
Just wish that those treating prostate cancer (urologists, radiation oncologists and medical oncologists) were more comfortable about discussing the full impact on a man of his treatment for prostate cancer. This is the stuff that support groups need to be addressing. Most men are so uncomfortable talking about anything related to genitalia and sexual function.
Impotence discussion makes most doctors uncomfortable and they quickly move on to another subject.
Testing and treatment was one of the worst mistakes I have ever made in my life. My doctor lied to me and I now have a long list of side effects. I get no help from any of my doctors.
John:
A doctor should give you a list of possible side effects, the probability of these side effects. The doctor should also give you your life expectancy years with treatment and without treatment. Did he do either? Most men choose longer life expectancy over avoiding the possible side effects … but each man should be given an accurate accounting of the trade-offs.
Dear Mr. Maley:
Respectfully, I think your comment to John is something of an over-reach. The list of possible side effects of almost any type of treatment is commonly extensive. Have a look at the product prescribing information for any drug. What good doctors try to do is tell their patients about the most common side effects that they might expect (so that they are aware of these and what to do about them if they experience such side effects) and the most serious known side effects (which may be much rarer but the effects may be devastating, up to and including death).
It would be extraordinarily difficult for most doctors to tell their patients with any high degree of accuracy what the entire list of “possible” side effects is for any form of treatment, let alone the probability of those side effects for the patient in question (which can vary to an extraordinary degree).
You might, as an example, want to compare the list of side effects associated with treatment with enzalutamide (Xtandi) that is provided for patients by the manufacturer of this drug (see here) with the list of side effects that is given in the full prescribing information for the product (see here, and look at sections 5 through 8). The information in the prescribing information is far more comprehensive … but much harder to understand for the average patient who has little knowledge about the clinical trials process.
My husband had prostate cancer in 2015 and has beaten it with radiation therapy. However, his penis went from 8” length to 2” in length when hard. Buried when soft. Urine stream is there but weaker, and he has tried ED pills to no help. Does anyone have any recommendations? We are newly married and this is a struggle for us. Thanks!
Dear Agnes:
Some men with this problem have been able to solve it very successfully with penile implants, but they don’t work well for every couple, and then the question is whether the implant is covered by your health insurance provider. There are a variety of types of implant available, and you might want to discuss this with a specialist in this specific type of urologic surgery. Here is a link to some basic information about penile implants on the web site of the Mayo Clinic.