“Normal” sexual functionality after a radical prostatectomy — it’s not very likely

According to a report on the Science Daily web site today, a presentation at the ongoing European Association of Urology (EAU) meeting in Madrid, Spain, suggests that the ability to regain normal erectile and sexual function after a radical prostatectomy is actually rather worse than one might have thought.

The relevant data was actually disseminated in a media release issued by the EAU. Here is a summary of the facts provided in that media release:

  • Historically, the “standard” way in which researchers measure erectile function is via a validated questionnaire that is used to measure the International Index of Erectile Function (IIEF).
  • The IIEF questionnaire was not, however, originally designed to assess erectile function in men after surgery for prostate cancer.
  • Some researchers have long believed that that the IIEF questionnaire didn’t
    • Appropriately account for the sudden change in erectile function brought on by surgery
    • Allow for appropriate comparison of sexual activity post-surgery with sexual activity prior to the operation
  • Fode et al. (a Danish research team based on Copenhagen) asked 210 patients to complete the IIEF questionnaire at about 23 months post-surgery, but they added an additional question: “Is your erectile function as good as before the surgery (yes/no)”.
  • The authors report that
    • 49/210 patients (23.3 percent) showed no decline in their IIEF score post-surgery compared to pre-surgery,  … but …
    • Only 14/201 patients (6.7 percent) reported that their erections post-surgery were as good as their erections pre-surgery.

This certainly appears to confirm what many patients and advocates have long suspected — that radical prostatectomy is actually highly detrimental to erectile function, although many urologists fail to make this clear to their patients because they want to believe that 20 percent of more of patients will regain good erectile function.

To quote Dr. Fode:

The occurrence of sexual dysfunction after prostate cancer surgery is well known but our method of evaluating it is new. What this work shows is that having an erection as good as before surgery is a rare event, with the vast majority of men, more than 93% in our sample, experiencing some sexual problems after prostate cancer surgery. Fundamentally, we may have been asking patients the wrong question, but of course we really need bigger trials to confirm this.  We think that this work gives a more realistic, idea of the real problems which most men have after prostate surgery.

This is important to know before deciding on undergoing the treatment as your choice might be affected. For men who have already undergone surgery it is important to know that they are not alone in the situation and that their physician will likely be able to help if they discuss the problem.

Professor Francesco Montorsi, Chair Department of Urology, Vita Salute San Raffaele University, Milan, Italy, and a former editor of the journal European Urology is also quoted in the media release, as follows:

 As the average age of patients undergoing radical prostatectomy is decreasing, maintaining the ability to have an erection after an operation is increasingly important to men facing surgery. This is the first study of its kind, so we need to confirm the findings but above all to learn from problems which can face patients after prostate cancer operations. We need to look more closely at nerve sparing techniques, and ensure that good post-operative care is available for each patient.

The “New” Prostate Cancer InfoLink very sincerely hopes that a really good validation study can be carried out by a disinterested research team as quickly as possible. This would not be a difficult study and results could be provided in a series of phases (say at 6, 12, and 24 months post-surgery). However, it really does need to be carried out by researchers who are distanced from the surgeons who perform radical prostatectomies in order to make sure of the neutrality of the data. And it does need to very clearly differentiate between men having true bilateral nerve-sparing surgery for organ-confined prostate cancer and patients who have to have more extensive disease.

17 Responses

  1. Mr. Webmaster, you have a good suggestion to do a study, independent from the surgeons, on the true effectiveness of nerve-sparing surgery. My informal survey of 10 recent patients who believed they had this treatment showed they all developed ED.

  2. And this is news to anyone involved in the field of urology or patients!? Why is it there is after study about this. Every person in the world patient or doctor that is involved in this field knows this happens to everyone who is treated. Yet there are people out there suspect this is a possibility and feel they need to research it!

    Here is an idea. Instead of wasting time and money on something we all already know that is obvious, how about putting those resources into trying to fix the problem Yet that would make too much sense and prevent some “grad” student in medical school from writing and easy paper to graduate. … What a waste of effort.

  3. Dear Chris:

    This may come as a shock to you but actually there really are patients who recover very good erectile and sexual function post-surgery (without any help from Viagra or similar aids) that is just as good as prior to their surgery. Are they relatively few and far between. Yes they are, but I assure you that they do exist. So not “everyone” who has surgery loses erectile function.

    The resources needed to confirm the finding reported would be peanuts by comparison with the resources needed to “fix the problem.” Arguably, in any case, one way you would “fix the problem” would by by proving incontrovertibly that the rate of recovery of erectile function is as low as the authors suggest. These data would then become much more widely known because they would be clearly incorporated into treatment guidelines and a lot less men would delude themselves (or be deluded by others) into thinking that they would have high-quality erectile function post-surgery.

  4. Thank you for letting men and their families know that advertising no side effects and reality are two different things.

  5. I’m not sure that they have to validate a new survey question. If they just do the IIEF/SHIM as a baseline before surgery and then track responses afterwards, they can get a good reading on how erectile function has changed. In a similar study at MSKCC in 2013, Nelson et al. did just that. They found that only 16 percent of men with functional erections returned to baseline function after RP without ED meds. For men over 60 years of age, the number was only 4 percent. That study was co-authored by two illustrious surgeons, Drs. Eastham and Scardino.

    I don’t think the problem is lack of convincing data so much as that doctors don’t think it’s very important. Doctors don’t think it’s important because patients are not speaking up enough. I think we all have to do a better job of letting our doctors know that it’s very important to us.

    Incidentally, two questions I would like to see added to IIEF/SHIM and EPIC are about perceptions of penile shrinkage, and about climacturia (urination at orgasm) — two problems I hear about frequently in my support groups. There should also be fuller evaluation of the effects of age, lifestyle, and comorbidities.

  6. Dear Allen:

    I think the whole point of the study referenced above is that we DO need a new question because it clearly changed the results of the survey. The 16% reported by Nelson et al. is comparable to the 23% reported in this study based on the IIEF questionnaire. Adding the additional question dropped the perception of comparability significantly.

    And I agree with you about questions related to penile shrinkage and climacturia.

  7. Allen,

    As the title of this paper says …”it’s not very likely …”. I think that the only men, and it’s extremely rare, are men who are elderly and whose sexual performance was poor to begin with, so matching it post-surgery is no big feat. However, take a young fully functioning male and there will be none that recover to pre-surgery ability. What they fail to tell younger men is that this operation will not only destroy their sex life, it most likely cause them loss of relationships as well — current and future, due to the fact they are often paired with younger women, for whom sexual function is much more important. The physical aspect of a relationship with older couples is not as critical as it is with younger men. When doctors are counseling patients about this cancer, it is often with older men, for whom sex is far down on the list due to age. I felt it was vastly underplayed by my surgeon at Johns Hopkins as a side effect. It is played off as you might just suffer “some” ED. They never mention the potential loss/destruction of marriages and future relationships. … This is an extremely devastating side effect for men in their 40s … believe it or not.

    I also would wager that the men who recover to pre-surgery function is less than 1%, but who knows … we are taking their word for it. They might be stretching the truth to bolster their ego to make themselves feel better … I did a few times. But when it comes down to it, … you’re not even close to what it was after the treatment, if you are, what you had before treatment was far from normal.

    Also, wanted to note that most people, when diagnosed with “cancer”, are soooooo freaked out they don’t care what side effects are associated with treatment as long as they have a chance at being cured. I remember sitting in my urologist’s office at 42, with a 2-year-old and a 6-year-old at home, telling him I didn’t care if I had to wear a diaper the rest of my life as long as I would not die on them at such a young age. Side effects weren’t even on the radar with me as they aren’t with most men that receive this devastating diagnosis. Most people would think the urologist was crazy if they spent the majority of time focusing on side effects and not treatment of the cancer.

    However, even being a Gleason 6 I still would not have been able to handle AS for very long. No matter how you cut it this cancer takes, at a minimum, a good part, if not all of your life from you.

  8. The phrases “everyone knows” and “this is not new information” does not apply to the 250,000 newcomers to prostate cancer [each year]. Many of the insights our experienced readers already know are not published in the readily available books or web sites the new comers search for.

    Sitemaster, you perform a valuable service in sharing “old” information to us including your valuable questioning of these new studies.

  9. They should just ask their wives. An awful lot can happen during the 2 years you’ve been frozen out, while he waits for functioning to return …

  10. This is the kind of research question I often grappled with in my years doing market research. I believe that when you ask a person a question right then at baseline, you get a truer reading of his actual condition than if you ask him to think back at a time 23 months later. However, when you ask him 23 months later, you are getting a truer reading of a different sort — his disappointment with his results compared to his expectations. Thus, both are important measures, but they measure different things. Whichever way we cut this, erectile function outcomes are oversold, and under-addressed.

  11. Very sad, everyone wants to do something, except consider what the National Institute of Health and major Universities are doing with early detection with MRI and MRI-guided Biopsies and MRI-guided treatment, before it leads to radical treatment. So we tell our sons and grandsons, wait 15 years; it may be better? Not mine, I am 6 years post-successful MRI-guided FLA and no side effects. What did I risk? Nothing. All my treatment options are still open. Things do change for those who reach of it and not accept the past.

  12. Dear kEN:

    So I have a question for you. You have never told us your clinical status at diagnosis, i.e., your clinical stage; your PSA level; your Gleason score; your PSA density; etc. I ask because if you had low- or very low-risk disease it is arguable that you didn’t need treatment at all. That doesn’t mean MRI-guided FLA was inappropriate, but there are probably less than half a dozen physicians in the country with the ability to do MRI-guided FLA, so it isn’t actually going to be available for most men, and most insurance companies won’t pay for it anyway.

  13. One 3 + 3 (30%), one 3 + 4 (35%), very near nerve bundle; three medical centers said surgery or radiation. Sounds like they thought AS was out. We had this conversation last year; the comment then was MRIs were not widely available, cost too much, and were not covered by insurance. There are 35 medical centers now doing prostate MRIs and they are being paid for by insurance with a little push. Pinto was training 15 doctors last may. UCLA is in clinical trials for focal laser ablation (FLA). Stanford, NYU, Mayo have FLA-trained Doctors on staff. When will FLA be widespread and insurance paid? Who knows, I guess it depends on how many men get fed up with the current system and decide to do something about it and how many men want their sons to wait 15 years. Anyway I was glad to see this site now saying men would benefit from 3-T mpMRIs.

  14. Hmmm … I’m 4 years post-robotic prostatectomy and have full erections and no size reduction. This was achieved about 6 months post-surgery and I also no longer needed the help of ED medication. My sex life is healthy. The only thing I really do differently is I make sure I urinate before sexual activity. Granted I am closing in on 45 years old and was very young considering the average but with a healthy diet, regular exercise, and not being overweight you can easily increase your chances of a sex life as close to pre-surgery and without the mess which is a big bonus for my wife.

  15. Dear Christopher:

    (a) You need to appreciate just how truly lucky you are to have had such an outcome. It is actually most unusual.

    (b) The chances of a recovery like this are far higher in a 41-year-old (at time of surgery) than in a 56-year-old or a 66-year-old, and very few men get diagnosed with prostate cancer at less than 45 years old. So your age at surgery quite definitely biased opportunity in your favor, but you also need to understand than even many men as young as you will not recover anything approaching the same level of erectile/sexual function post-surgery as they had pre-surgery.

  16. I concur with the need for an independent study, i.e., independent of the surgeons who have a vested interest in a result which underestimates the ED following surgery. I have taken part in previous studies. I completed the relevant survey before the operation, experienced ED following the operation, but was not questioned following the procedure on the ED issue. I would assume that I was discounted as an incomplete survey item. The definition of post-operative sexual functionality is a strained form of penetration which gives little to either party.

    From discussions with others I would conclude, on a qualitative basis, that ED effects nearly 100% of patients. I did not foresee the effects and the impact before surgery. The effects extend to:

    — Disconnection with normal interplay on a day-to-day basis with women generally
    — Decline in normal interest in women
    — A change in 0ne’s view of oneself as a sexual being; one becomes a bit of a dead stone
    — Effects and strains on my marriage

  17. Dear Andrew:

    While I agree that all of the post-surgical effects of a radical prostatectomy on erectile and sexual function can and do occur, I think we have to be clear that “can” does not necessarily imply “will”.

    These effects are certainly a major problem for a lot of men and their partners, but it has to be said that there are also many men and their partners who are able to overcome these problems or are simply not affected by them to the same degree as you have experienced. Some (but far from all) of this quite certainly has to do with the degree to which individual men define themselves in relation to their sexual capabilities — and we know that there is significant variation from person to person with regard to that factor (which may have nothing at all to do with their actual sexual capabilities).

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