The problems genital shrinkage causes, and the distress that results


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.

“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.

Editorial notes: The ideas and opinions expressed on the ASCO Connection Blogs do not necessarily reflect those of ASCO. None of the information posted on ASCOconnection.org is intended as medical, legal, or business advice, or advice about reimbursement for health care services. The mention of any product, service, company, therapy or physician practice on ASCOconnection.org does not constitute an endorsement of any kind by ASCO. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of the material contained in, posted on, or linked to this site, or any errors or omissions.

The “New” Prostate Cancer InfoLink thanks ASCO for kindly allowing us to “re-blog” this article on this web site.

3 Responses

  1. 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).

  2. 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.

  3. 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.

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