Crooked Erections Occur in One in Six Men after Prostate Surgery

BY MARK SCHOLZ, MD

The American Urology Association meeting is the biggest meeting of urologists in the world.  The program is structured around the exposition of several thousand scientific presentations, preliminary reports called “abstracts.”  While reviewing this year’s abstracts, one in particular, written by Dr. John Mulhall from Memorial Sloan Kettering in New York, caught my eye.  Dr. Mulhall, as many of you know, is the world’s leading expert on male sexual dysfunction occurring after treatment for prostate cancer.  He has written several books on this topic and will be a featured speaker at the Prostate Cancer Research Institute’s patient education conference this September.

In Dr. Mulhall’s study, there were 276 men who underwent surgery for localized prostate cancer and were evaluated for the development of a crooked erection (Peyronie’s disease) within 3 years after undergoing the operation. The mean age of the men in the study was 56.  Dr. Mulhall found that 17.4% of the men developed a crooked erection an average of 12 months after surgery, a more than tripling of the risk of Peyronie’s disease compared to the rate in the general population rate which is only 5%.

As described in Wikipedia, “Peyronie’s disease is a connective tissue disorder involving the growth of fibrous plaques in the soft tissue of the penis affecting an estimated 5% of men in the general population. Specifically, scar tissue forms a sheath of tissue surrounding the corpora cavernosa causing pain, abnormal curvature, erectile dysfunction, indentation, loss of girth and shortening. A variety of treatments have been used, but none have been especially effective.”

In his abstract, Dr. Mulhall stated that there has only been one previous report indicating that prostate surgery leads to an increased risk of Peyronie’s.  How is it possible that such a frequent and devastating development could have been overlooked by the urologic medical community for so long? Nerve-sparing radical prostatectomy has been performed in several million men over the last 30 years.

I can only think of two possible explanations.  One is that urologists simply don’t talk to their patients and they have been totally unaware of the frequent occurrence of Peyronie’s.  The other is that the urologists are indeed aware of this devastating side effect but have failed to report it. This would be consistent with the failure of urologists to report another shocking side effect—ejaculating urine—that Dr. Mulhall and a few other experts have reported occurring 20% of the time in men who have prostate surgery.  “Climacturia,” as Dr. Mulhall has termed this unfortunate side effect has also only recently come to medical attention.

If the surgical treatment of prostate cancer was the only way to improve longevity, dreadful side effects like these might be considered acceptable.  However, in this day and age, multiple other options such as radiation, seed implants, focal therapy and even simple monitoring with active surveillance, are all considered mainstream.  Even so, over 75,000 men continue to undergo radical prostatectomy every year.

Studies show that 80% of the time, when trying to decide on treatment, men ultimately decide to follow their doctor’s recommendation. That doctor, in the world of prostate cancer, is almost always a surgeon.  Urologists are the designated hitters who perform the random needle biopsies that lead to a diagnosis of prostate cancer. As a result, urologists are positioned as the ‘first physicians in line” to advise a newly-diagnosed patient when cancer is detected.  The urologist makes the initial phone call when a biopsy shows cancer and naturally assumes the primary role in guiding that man in the management of his cancer.

The Importance of Finding an Experienced Doctor

BY RALPH BLUM

If you don’t live in a city, finding a urologist who specializes in treating prostate cancer can be a major challenge. Usually your choice will be limited to who your primary care doctor will refer you to, generally a local urologist.  But before you take this step you need to be aware that all urologists are not created equal.

Furthermore, the average community urologist has a medical practice most of which involves treating problems like infections, impotence, incontinence and kidney stones. He may be an excellent doctor, but he does not have time to keep up with what is new in the fast moving prostate cancer field. Also, without the opportunity to treat large numbers of men with this disease, how can he be familiar with the advantages and disadvantages of all the new treatments?

So you need to develop the “I’m from Missouri and you’ve got to show me” mindset and ask the tough questions: How many cases of prostate cancer has he treated successfully? And if he recommends surgery, how many radical prostatectomies has he performed overall, and how many in the past twelve months? Does he perform nerve-sparing surgery, and if so what is his success rate with preservation of both potency and normal urinary function?

Unless you have the aggressive, high-risk form of prostate cancer my best advice is to resist your natural desire to rush into treatment that will compromise your quality of life.  Of men diagnosed over 50%have slow-growing, low-risk disease and do not need immediate treatment.  However, if you have the “just get it out” attitude, bear in mind that your community urologist is most likely not doing anywhere near enough radical prostatectomies to qualify as or stay proficient.

Despite the well-documented over-diagnosis and over-treatment of prostate cancer, during the past decade, the number of prostatectomies performed each year has more than doubled. And since all the marketing hype surrounding “the robot that can operate,” increasingly men are traveling to high volume centers that offer robotic surgery.  But remember, it’s the man behind the robot who is actually performing the surgery, and you don’t want to be on his learning curve.  Unless you find an experienced and highly skilled surgeon, a satisfactory outcome is extremely unlikely.

Many men are way too motivated to submit to radical treatment for what is typically a non-life-threatening condition. A combination of the urologist’s preference for surgery and most men’s desire for closure, leads to tens of thousands of unnecessary radical prostatectomies every year. You are about to make a pivotal decision that will affect the rest of your life. So before you make any treatment choice, you owe it to yourself to get a second opinion from a prostate cancer specialist—even if it means traveling to a city where such practitioners are available.

The Art of Being a Patient

BY RALPH BLUM

In an essay entitled Complications: Surgeon’s Notes on an Imperfect Science, Atul Gawande, surgeon, writer and professor at Harvard Medical School wrote: “Just as there is an art to being a doctor, there is an art to being a patient. You must choose wisely when to submit and when to assert yourself.”

 

This advice is especially important if you have just been diagnosed with prostate cancer. Because prostate cancer is so common, and in most cases so slow growing, that to submit to any form of radical treatment could be a huge mistake, and hugely detrimental to your quality of life. Yet most doctors you consult will advocate some form of radical treatment. It’s what they know, what they do. And it goes against the grain for both doctors and patients alike not to treat cancer.

 

But prostate cancer is unique among cancers because the mortality rate is so low. Autopsies reveal that more than 50% of older men have the disease, live with it, and die from something else—sometimes without ever knowing they had a life threatening condition. Furthermore, the life expectancy of men with recurrent prostate cancer stretches out well past a decade. And yet the radical prostatectomy, one of the most complex and challenging surgeries because the prostate is located in absolutely the wrong place for a simple surgical solution, is still the most widely recommended treatment option. It is also the most unnecessary, and the one most likely to leave you incontinent and/or impotent.

 

My own experience with urologists has not been a happy one. Twenty years ago, a doctor who wanted nothing but patient compliance, told me that if I did not agree to immediate surgery I would be dead in two years. His recommendation and prognosis were not only wrong, but in my opinion violated the ancient medical precept incorporated in the Hippocratic Oath: “First do no harm.”  Fortunately I was not the kind of patient to be easily intimidated.

 

A significant part of any doctor’s job is to create a relationship based on trust, confidence and hope. And as patients, our job is to put ourselves in charge of our recovery. It is our job to do the research, and give ourselves permission to say “No” if we feel the recommended treatment—for what ever reason, or simply instinct— is not right for us.  My decision not to be intimidated by what, in effect, was a death threat, but to monitor the cancer and take the time to educate myself, has given me many years of quality time with my wife that almost certainly would have been lost or diminished if I had committed to immediate surgery.

 

Doctors have busy lives. They believe in what they do. But often they tend to treat the disease and not the patient. Traditionally we’re encouraged to go along with whatever they recommend, and asking questions, or refusing to follow advice is unpopular.  But this passive attitude does not serve us well. The feisty, “difficult,” assertive patient, the one who challenges the doctor, is the one who has the best outcome.

Is Prostate Surgery Right for You?

RALPH BLUM

As I wrote in my last blog, once your family doctor has referred you to a local urologist and you have been diagnosed with prostate cancer, your first and most important decision is choosing a doctor with the necessary skill and experience to help you weigh all your options and determine your best course of action. This doctor may not be your community urologist.

Provided the cancer is still contained within the prostate gland, and provided there is no medical reason surgery is contraindicated, your urologist (who is a surgeon) will almost certainly recommend it. And in your emotionally vulnerable state, and with a natural desire to just get rid of the cancer, it is quite likely you will uncritically take his advice, without question or research.

After talking with your urologist you may come away with the impression that prostate cancer surgery is fairly straightforward. It is not. Anatomically, the prostate is in absolutely the wrong place for a simple surgical procedure. Located as it is within millimeters of the bladder and the rectum, there is zero tolerance for a slip of the scalpel. To make matters worse, there is prolific venous blood supply surrounding the gland, and on a bad day even the best surgeons can end up operating in a pool of blood, and with restricted ability to see clearly in order to spare the miniscule nerves (thinner than a human hair) that control erections. With such an intricate and complex procedure the high rates of impotence are hardly surprising.

So much skill is required to successfully perform a radical prostatectomy that being operated on by less than the very finest surgeons dramatically increases the chances for a poor outcome. Levels of ability vary widely from surgeon to surgeon even in prestigious university centers. In 2004, Dr. Peter Scardino, Chief of Urology at Memorial Sloan-Kettering, published a study documenting the differenced in “talent” in this unregulated field. The study evaluated the surgical skill of twenty-six urologists on staff at Sloan-Kettering and Baylor.  The indicator used to measure skill was the frequency of leaving cancer behind after the operation (the technical term is “positive surgical margin”). The study reported that the best doctor in the group left cancer behind in 10% of his cases. The positive margin rates of the other twenty-five urologists ranged from 11% to a shocking 48%.

 

Despite these disturbing statistics surgery is still the primary treatment of choice for those diagnosed with prostate cancer. Yet while a select few surgeons perform dozens, perhaps a hundred or more procedures, generally speaking, the average urologist performs fewer than half a dozen prostate operations a year. In the U.S. there are somewhere around 70,000 radical prostatectomies done annually, and there are 10,000 urologists. If you do the math it’s clear that your community urologist is probably not doing enough prostate surgeries to stay proficient.

 

So buyer beware. Before you consent to surgery be sure to ask your urologist how many nerve-sparing prostatectomies he has performed--it should be at least 50. Preferably upwards of 200. Did often he get positive surgical margins? What percentage of the men he operated on are sexually potent a year after the procedure? What percentage suffers from incontinence a year later? And if you are over 70 years old and your urologist is recommending surgery, find another urologist, or better still, a prostate oncologist.

 

I hope this short essay has helped convey the importance of not rushing into treatment.  It bears repeating: Go slowly. Do your homework. I have avoided surgery for almost 25 years. Consider the options, including—since surgery is only right for some of you—“Do nothing,” which for many men translates as “Die with prostate cancer, not from it."

Pay-Off Versus Collateral Damage

BY RALPH BLUM

Life is full of risks, but if you are one of the legion of men with prostate cancer whose urologist is recommending a radical prostatectomy, make sure you have considered the following risks of collateral damage:

Incontinence: 
Urinary leakage is usually a temporary problem after a prostatectomy, but even the best urologists report that about 7% of their patients are left with permanent and constant urinary drainage.  Less skilled surgeons have much higher rates. After surgery, most men experience some minor leakage when they cough, lift, bend over, or laugh.

Another problem is the formation of scar tissue in the urethra, the passage from the bladder to the penis. The suture site where the severed urethra is reconnected can become constricted by scar tissue that blocks the flow of urine. This may be correctable with urethral dilation, a process forcing oversized, stainless steel probes up the penis to stretch out the ring of rock-hard tissue. Unfortunately, scar tissue is notoriously uncooperative, often refusing to stretch at all. In some cases the stretching fractures the brittle ring of tissue, resulting in permanent incontinence. If that happens, another operation is required to implant an artificial sphincter.

Impotence:
Without nerve-sparing surgery permanent erectile dysfunction is virtually inevitable. With nerve-sparing surgery, the best surgeons hope to be able to save the nerve bundles (located very close to the back of the prostate on both sides) that control erections. If both sides of the nerve bundles can be saved, potency is around 40% to 75% in patients under 70 years old (depending on which expert you consult, and the patient characteristics). If only one side of the nerve bundles can be saved, potency drops to around 25% to 45%. However, until the doctor actually performs your surgery, he won’t know whether he can spare the nerve bundles.

Even men who recover their erections after surgery undergo a prolonged period of impotence, often lasting up to a year or more. During this time of enforced abstinence, as with any unused muscle, atrophy of the penis occurs. This means that of the men who end up recovering some degree of erectile function, only 5% report that their erections are as good as before surgery.  Additionally, despite claims from urologists who maintained for years that patients’ complaints of penis shrinkage were anatomically impossible, diligent researchers have finally collected the necessary measurements showing that shrinkage is common. The average amount is about one-half inch, although some men undergo considerably greater shrinkage.

Studies show that impotence can totally redefine a man’s self-esteem, his self-confidence and his relational satisfaction. In some cases Viagra can help with surgically induced impotence. However, penis vacuum devices, penis tourniquets, penis injections (yes, with needles) or the surgical implantation of a plastic rod into the penis is often required to restore function. In my case, lead me to the monastery!

Other Rare but Possible Risks from Surgery:

• Significant blood loss requiring transfusions
• Pain from surgery
• Blood clots in the legs
• Heart Attack
• Infection
• Temporary or permanent memory loss from anesthesia
• Miscellaneous surgery-related problems

 

So with these considerable risks, what is the pay-off for undergoing surgery? The major pay-off is, if you are lucky and have a successful nerve-sparing prostatectomy, it will cure the cancer and you will suffer minimal collateral damage. The only other advantage is you get a better idea of how serious your cancer is because the pathologist evaluates the prostate after its removal. If he finds that the cancer has spread even a little, you and your doctor can decide what to do next.

 

No one knows for sure which prostate cancer treatment gives a better chance for cure or a better quality of life. But if you decide to go with a prostatectomy, make sure that the surgeon you are considering is experienced and skilled in the procedure.

Sexuality and Intimacy after Prostate Cancer Treatment

BY MARK SCHOLZ, MD

My life is turning into an evangelistic crusade to raise awareness about the risks of prostate cancer treatment.  Tens of thousands of men are undergoing unnecessary radical prostate cancer therapy with dire sexual consequences. These inappropriate and often fatefully wrong treatment choices are made because men are often completely unaware of the irreversible effects of the treatment itself.

Thankfully, I am not alone in this battle to inform men about the harm associated with prostate surgery. Another prostate oncologist, Dr. Celestia Higano from the University of Washington, recently published a scientific review on this very topic in the Journal of Clinical Oncology (JCO). For those of you who haven’t heard of the JCO, I consider it to be the most prestigious scientific cancer journal in the world.

Today’s blog will offer quote seven selected sections from Dr. Higano’s important article. To add some gravitas to the eye opening statements you are about to read, please realize that every one of her comments was referenced to a specific scientific report.  In other words, these statements have nothing to do with opinions. They are genuine outcomes from published scientific studies.

So without further ado let’s start with the first quote from the article:

Quote #1: “Unfortunately, many couples believe that even if they have problems with erectile dysfunction (ED) … they will be able to resume their normal sexual practices through the advances of modern technology.4 They are not informed that sexual function will never be the same after any form of therapy and they are often unprepared for the changes in their sexual and intimate relationship.” (Italics mine)

Quote #2: “PDE5 inhibitors (Viagra, Cialis) and other erectile aids are not successful for all patients with ED and, even when effective, half the patients stop using them within one year.11 Why couples stop using ED therapies has not been adequately investigated , but disappointment that sex life is not the same … likely contributes to this outcome.”

Quote #3: “In a Memorial Sloan-Kettering series of 475 men … 20% of men who had radical prostatectomy (RP) had climacturia at one year, and climactauria as associated with both painful orgasm and penile shortening.13” (Climacturia means that orgasm results in the ejaculation of urine instead of semen).

Quote #4: “At the Karolinska Institute, 1,288 patients had either open or robotic-assisted laparoscopic RP, and of the 691 men who were sexually active, 38% reported climacturia at least sometime during sexual activity. Of the men who reported climacturia, 72% had climacturia less than half the time, 17% more than half the time, and 11% all the time.14”

Quote #5: “In a review of 1,459 men who had RP at New York University, climacturia was found to decrease from 44% at 3 months to 22% at 24 months after surgery. Climacturia is a common complication of RP but is often overshadowed by concerns about ED and overt urinary incontinence.14-16”

Quote #6: “In a study of VED (vacuum erectile device) use after RP, the length and circumference of the penis decreased in 63% of patients who did not use a VED after RP compared with only 23% who did.18-20”

Quote #7: “Surgery can also result in Peyronie’s disease (also called, “crooked penis”) in up to 16% of patients.23"

When patient are informed of the dire consequences of surgery they are often mystified as to why urologists, who must be aware of the damage surgery causes, continue vigorously to recommend it. I have heard many patients voice the opinion that urologists are driven by a selfish desire for financial gain.   

The financial motive, however, fails to ring true. As medical procedures go, prostate surgery is poorly reimbursed. Also, when urologists are diagnosed with prostate cancer they themselves often proceed with a radical prostatectomy. So money is not the primary issue. Rather, consider that performing surgery is part of the very fabric of a surgeons’ persona. From a surgeon’s point of view, if you are not operating, you are not a surgeon.

Men considering surgery for prostate cancer need to be aware of its substantial risks. And when getting advice about which treatment to select, patients also need to realize that surgeons usually can’t provide balanced advice. They are too close to the trees to see the forest.