A Midlife Crisis Avoided

BY MARK SCHOLZ, MD

Building up a medical practice and getting a late start with a family, my midlife crisis was delayed past the usual occurrence for men in their early 40s.  However, by the time I hit 50, self-questioning was starting to surface. My life had meaningful pursuits but it was time to take a deep breath and do the traditional life inventory of the “mid-years,” to reassess my goals for the last third of my existence here on planet earth.

After reflection, I realized that I really didn’t have any great ideas to reinvigorate my passion for the last lap. I couldn’t sell my wife on the idea of buying a Lamborghini (I already owned a small boat).  I didn’t have any specific desire to travel.  I had given up on golf due to a terrible and uncorrectable slice.  I have never been successful playing the stock market.  All these considerations were going through my head about ten years ago.  Now ten years later, I turned 60 and I feel revitalized and reinvigorated.  So what turned things around?  

Many of you have come to know Ralph, my coauthor in the Snatchers Blog. He is as a sensible dispenser of advice and knowledge about life and about prostate cancer.  I first met Ralph almost fifteen years ago, first as a patient, subsequently as a writing teacher and now as a writing partner. As I reflect back over the years that we have worked together I am convinced that its Ralph who spared me from my mid-life crisis.  Don’t get me wrong, I have a lovely family.  My wife Juliet is a bulwark of truth.  My children are delightfully sensible, talented and hard-working. I am also blessed with an amazing medical practice with wonderful coworkers and extra-special patients.

Even so, visiting with a dozen men a day, five days a week, year after year, decade after decade can wear you down.  Getting paid less and less every year while the work load steadily increases is hardly inspiring either.  A midlife crisis was in the wings and I had no idea how my passion for the medical profession could be restored.  So back in 2005, I was looking for a new challenge when Ralph first approached me to write a book . I even agreed after he told me the zany title, “Invasion of the Prostate Snatchers.”

Fortunately, when Ralph invited me to be a cowriter, he didn’t give a second thought to the paucity of writing skills.  (Ralph has so much confidence in his own writing skills he believes he could train a monkey to write). Over the next four years we clashed on many occasions. Considering that English was my worst subject in school I have to give myself some credit for having the courage to accept his proposal.

Back then I had little interest I had in developing the craft of writing.  Writing is hard to do.  In addition, with limited free time in a busy medical practice, it’s no surprise that developing writing skills was a low priority to me.  But I was also starting to get upset about the injustice of so many men’s sexual identities being robbed by unnecessary surgery.  The dawning realization, that men, rather than being helped by surgery are actually being tremendously harmed, is what motivated me to finally confront the painful task of developing some writing skills so I could convey my observations to the naïve and unsuspecting patients. Thank God I had Ralph to tutor me along through this long and arduous journey.

Learning to write about topics that matter to me (such as saving men from the loss their sexual identity) has saved me from the “meaningless” philosophical wandering that characterizes a midlife crisis.  And as I get older and further polish my writing skills, I have enjoyed even more satisfaction by helping men to avoid numerous medical pitfalls.  For example, in my next blog I’ll be exposing another incredibly repugnant policy—men on Active Surveillance who have 12 large needles plunged through their rectal wall into the prostate gland every year. Yikes!

In the meantime, let me express my genuine appreciation to Ralph for having the patience and skill to draw me down this totally unexpected pathway.  At this point I am happy to report that I see no hint of an existential crisis looming on the horizon.     

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.

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.

A Breakthrough Study in Prostate Cancer

BY MARK SCHOLZ, MD

Ten years ago everyone agreed that surgery was the “Gold Standard” to which every other kind of treatment should be compared.  Now as we approach 2013, you rarely encounter the Gold Standard argument to bolster surgery as the preferred treatment approach.  What has led to the change in perspective and why has it taken so long for this change to come about?

Good Science Finally Leads to a Clear Answer

The primary cause for the changed perspective about surgery is the result of a well-performed scientific study published this year by Dr. Timothy Wilt in the New England Journal of Medicine.  The study has been a long time coming.  It was first conceived way back in the early 1990s when Dr. Wilt and others designed a definitive trial to test whether or not radical prostate surgery improves survival compared to observation. Even back then, researchers knew that prostate cancer can often behave benignly and were questioning the benefits of radical surgery.  Therefore, between 1994 and 2002 over five-thousand men were invited to participate in a study comparing immediate surgery with no treatment.  To make the comparison totally fair, individuals volunteering for the study had to be willing to have either surgery or observation based on the flip of a coin.  Most of the more than five thousand men who were invited to participate in the study refused. Ultimately, however, 731 men agreed to participate.

Modest Benefits for “Bad” Cancer, No Benefit for “Good” Cancer

At the start of the study the average age of the men participating was 67 and the median PSA was 7.8. After ten years the difference in prostate cancer mortality was essentially the same in both groups, i.e., within the expected range of statistical variation: 5.8% died in the surgery group and 8.4% died in the observation group.  However, subgroup analysis of the 251 men in the study who started off with PSA levels above 10 showed a modest improvement in survival for the men undergoing surgery: 5.5% died in the surgery group and 12.8% died in the observation group.

Validation of the Right Way to Look at Prostate Cancer

This picture of how different types of prostate cancer behave over long periods of time (having a high PSA for example versus having a low PSA) has been slowly forming in the minds of the prostate cancer experts over the years.  Dr. Anthony V. D’Amico, MD, PhD, Professor of Radiation Oncology at Harvard Medical School, is credited with developing the modern staging system that divides men into Low, Intermediate and High-Risk categories (At the PCRI we call them Shades of Blue, i.e., Sky, Teal and Azure).  Dr. Wilt’s study conclusively validates the fact that favorable prostate cancer—termed Low-Risk—can be safely monitored without immediate treatment, whereas men with High-Risk disease derive a modest benefit from immediate treatment.  His study also reported an intermediate outcome for the men with Intermediate-Risk disease: After 10 years, men in the Intermediate category showed no improvement in cancer survival with surgery.  However, there was a 10% lower incidence of metastases in the men with Intermediate-Risk who had surgery.   

Conclusion

Dr. Wilt’s study is an important breakthrough because it is the first modern, large, long-term, prospective, randomized study comparing treatment versus no treatment in men with relatively early-stage disease, i.e. diagnosed via PSA screening.  This study provides critically important scientific confirmation validating the policy of withholding radical treatment in men with Low-Risk disease.  The study also validates the predictive accuracy of the D’Amico staging system which functions by dividing men into Low, Intermediate and High-Risk categories.  Lastly, Dr. Wilt’s study provides a quantifiable measure of the degree of benefit associated with immediate surgery in men with Intermediate-Risk and High-Risk disease.  Using this information, individuals with High-Risk disease can better understand the rather modest survival advantages of surgery, and weigh them against the probable deleterious side effects, enabling them to determine for themselves whether or not they want to proceed with radical treatment.

A New, Improved Ultrasensitive PSA Test: ProsVue

BY MARK SCHOLZ, MD

The PSA blood test has been much maligned of late. Experts are concerned that blind screening of the general population leads to more harm than good. The apprehension is that many men are getting swept up into unnecessary radical treatment to treat innocuous forms of prostate cancer.

The problem with PSA testing used for screening is that elevated levels in the blood can result from a variety of causes including recent sex, strenuous exercise, an enlarged prostate gland or prostate cancer.

However, PSA testing is extremely useful for monitoring disease progression in men with known prostate cancer. Management of the disease is greatly simplified by this blood test. Rising PSA levels in the blood indicate that the cancer is growing.  When levels are declining it serves as a clear signal that the cancer is responding to treatment.

PSA testing is particularly useful because it can be accurately measured in extremely small quantities, down to less than a billionth of a gram.  Thus, cancer can be detected and tracked long before metastases become visible on a scan.

Just recently the FDA approved an enhanced PSA test called ProsVue. The test, manufactured by IRIS Molecular Diagnostics, can measure PSA levels below a trillionth of a gram. This new test has proven useful as a diagnostic marker for detecting the presence of residual prostate cancer after surgery.

Such a test has a practical application in men after surgery to help determine who is likely to develop a cancer relapse, i.e. to determine which men have residual microscopic cancer left behind after the operation.  Only the individuals with microscopic disease are destined to relapse and will benefit by being treated with immediate radiation. Without the ProsVue, doctors have been giving radiation to everyone with positive surgical margins even though statistics show that only about half of the men being treated actually harbor residual microscopic cancer. 

Bottom line:  Previously published studies of standard ultrasensitive PSA assays used after surgery have shown some utility for predicting future cancer relapse. Therefore it is likely that ProsVue, which is substantially more accurate than existing PSA technology, will ultimately prove to be a useful and accurate test for predicting which men are at risk for a cancer relapse and are most likely to benefit from radiation.

“Relapse” is Not a 4-Letter Word!

BY RALPH BLUM

You had surgery, or radiation, or both, and you may have been doing just fine for years, enduring all the anxiety-provoking PSA tests, and regular check-ups without alarms going off. So you thought and hoped that you were cured or permanently in remission. But apparently the treatments failed to wipe out the cancer completely. Because it’s back!

Your first reaction is bound to be shock and heavy panic. But remember: a relapse is not an imminent death sentence. The odds are excellent that with the new drugs on the market, and new ways of thinking about the various treatment options newly available, relapsed prostate cancer can be effectively controlled. You are now among the millions of men who had to learn that they can live with prostate cancer—that with care and management, they will die with the disease, not from it.

I know it’s easy to say, “Try not to panic.” The fact is, you have work to do. Depending on the type of treatment you had initially, and on your age and any concurrent illnesses, and to depending to what extent the cancer has spread, you will now need to select the best treatment for dealing with the cancer in its current stage. Your options will usually include radiation, hormone therapy, chemotherapy, immunotherapy or a combination of therapies.

After undergoing the tests to determine how advanced the cancer is and whether it has spread beyond the prostate, as mine did years ago in order to make an educated decision your best bet is to consult with a urologic oncologist—a doctor who specializes in treating cancers of the genitourinary system. If you ever needed a truly excellent medical ally, it’s now. And be aware—especially if you live at a distance from a major center—that you will find the most highly trained specialists at major medical centers or academic centers. These doctors are in the best position to judge the benefits of the latest therapies based on their experience with a significant number of relapsed prostate cancer cases.

Your fear and frustration are nothing to be ashamed of. Fear of dying, fear of pain, fear of impotence and incontinence, fears about how the recurrence will affect your work and how you will be able to provide for your family—all those fears hammer your immune system and diminish its ability to come to your defense.  Fear and the pervasive loss of control that relapsed prostate cancer injects into your life are the hardest things you’ll ever have to deal with. And have no doubt: your fears can be compounded by a lack of knowledge. You need to know that no matter what initial treatment you underwent, a variety of treatment options are still open to you. There are currently more than twenty new promising prostate cancer therapies in development. Go online. Consult with “Dr. Google.” Find out what’s available—in the experimental stage or newly FDA approved—to support you right now.

My wise friend and courageous ally, Harvey, who has been living with advanced prostate cancer (metastasized to two places to his bones) for almost a decade now, said this: “When nothing else is left in your control, you can always decide one thing: Your attitude. And with a good attitude, you will discover that there are freedoms: Especially, the freedom to choose what to do next.”

Above all, remember this: You are not alone. Although the five-year survival rate after initial diagnosis is almost 100 percent, prostate cancer will stage a relapse after the five-year mark in about 20 to 30 percent of cases. So when your anxiety skyrockets, look for knowledgeable allies. Go to your local prostate cancer support group and find a fox-hole buddy who’s been through what you’re experiencing, and who will gladly offer both  emotional support and valuable advice based on their own experience. And someday, God willing, you will find yourself providing someone else—someone who is going through what you are now—the counsel and hope only available from a long time relapse survivor.

Climactauria

BY MARK SCHOLZ, MD

Some men—unfortunately, only a minority—are genuinely pleased after prostate surgery.  Their erections are maintained, cancer is gone and they don’t leak urine. The excitement of surviving an operation with one’s manhood intact often leads to euphoria with repeated public declarations about the wonders of surgery:  “Come on in,” they say, “The water’s fine!”

In reality, there is no “good” treatment for prostate cancer. Sure, some men can luck out and are happy to talk about it. But more frequently, when men are asked how they are doing after surgery, they say they are fine, even when they are not. No man likes going public about his lost sexuality.  And there is little value in bemoaning what can’t be changed.

So, does it make any difference which treatment is chosen?  Is radiation any better?

Here is my estimate of the latest stats for a 65 year old with Intermediate-Risk prostate cancer with normal sexual and urinary function treated with either state-of-the-art surgery or radiation therapy administered by a world class surgeon or radiation therapist:

	Surgery	Radiation
Cure Rate	80%	85%
Impotence	50%	35%
Incontinence	8%	1%
Urinary Bother	2%	25%
Rectal Burn	0%	1%
Climactauria	12%	0%

As you can see, radiation has its own problems, particularly with what is termed, “urinary bother.” Bother can mean urgency, a need to go RIGHT NOW.  It can mean frequency, making multiple trips to the bathroom throughout the day. It can mean nocturia, having to urinate frequently at night.  Rectal burns are even more disastrous with unremitting pain, bleeding and leakage.  Fortunately this healthcare disaster is quite rare.

What is climactauria?  Ejaculating urine instead of semen.  One of the world’s top surgeons, Herbert Lepor from New York University reported on the incidence of climactauria in 1,459 men he treated with radical prostatectomy between 2001 to 2007. The percentage of men reporting any degree of climactauria 24 months after surgery was 36%.  The percentage reporting severe climactauria after 24 months was 12%. The stats in less eminent surgeons are probably worse.

Men contemplating surgery or radiation need to review the stats.  Both surgery and radiation are unappealing.  However, to my way of thinking, if a man’s conditionsdictates a need for treatment, skillful radiation appears less daunting than skillful surgery.

First Impressions Can Really Harm You

BY MARK SCHOLZ, MD

The human mind is constantly, searching, analyzing and processing our environs, attempting to make sense of the fluidly shifting situations that surround us. This mental process is healthy, designed to keep us in touch with reality.  “First impressions” are a good example of the powerful and rapid insights provided by these formidable processors we call our brains.  However, while first impressions are for the most part quite accurate, we all have learned at some point that they can also be misleading.

After interviewing thousands of newly-diagnosed prostate cancer patients, I have found that the first impressions of most patients about prostate cancer are almost always wrong.  Why?  There are several reasons.

First, there is no single type of prostate cancer. It is a condition that behaves quite variably. Therefore, it is hard to get your brain around the idea “I have prostate cancer,” and sum it up as a single sound-bite. Even though the word “cancer” would seem to be saying it all, the analogy of the three blind men touching different parts of the elephant works well here.

Second, despite the many variations of prostate cancer, none of these variations are similar to any other type of cancer. You cannot simply point to some other disease and say, “Just think of _____ . . .” (fill in some another cancer type here) and you’ve got it.  Prostate cancer is, arguably, unique among cancers. It has an exceptionally slow growth rate, a pattern of spread that uniquely spares critical organs like brain, lung and liver; it responds to a distinctive method of treatment, hormonal therapy, which commonly induces remission lasting more than ten years.  Moreover, prostate cancer is the only cancer that can be monitored with a one-of-a-kind blood test called PSA.

Third, while surgery is probably the best treatment for most other types of cancers, it is probably the worst (with occasional exceptions) for prostate cancer. And strangest of all, prostate cancer is the only common type of cancer that is exclusively managed by surgeons, rather than by medical oncologists).

As a result of all these one-of-a-kind characteristics, the way that men with newly-diagnosed prostate cancer manage their first impressions has a major impact on the treatment they will receive. Initially, men logically assume that prostate cancer is imminently life-threatening, just like other types of cancer. And for most cancers, surgery is best way to go about getting cured. 

The majority of urologists still tend to repeat their favorite mantra—“Surgery is the Gold Standard”—and to urge men to undergo ill-advised surgery. However though advances in seed implant and radiation therapy technology, the mantra is now outdated.  Newly-diagnosed men can avoid any regrets if they take time and truly investigate their options. “Don’t Rush!” should be their mantra. Men need time to calm their over-stimulated minds, time to regain their emotional bearings, so they can do the research necessary to make an informed decision.

Summertime

BY MARK SCHOLZ

The PCRI Conference is less than month away!   Every summer I scurry around making preparations.  Speakers have to be coordinated, exhibitors lined up, registrations fulfilled, entertainment scheduled. 

For this year we have significantly expanded the agenda:

Friday:  We have added introductory sessions that will be presented by our seasoned helpline facilitators, Jim O’Hara and Nathan Roundy.

Saturday Morning: Features the treatment of localized disease with various forms of radiation including seed implantation as well as covering high intensity focused ultrasound (HIFU).  In addition we will hear from the preeminent expert in the world on Active Surveillance, Dr. Laurence Klotz.  The morning will be rounded out with an update on the latest breakthroughs in imaging.

Saturday Afternoon: Will cover a multitude of recently FDA-Approved treatments for advanced prostate cancer presented by Eugene Kwon from the Mayo Clinic and Charles Drake from Johns Hopkins and yours truly. Amazing improvements have been made into medications that block testosterone, stimulate the immune system and poison cancer cells.

Saturday Evening: PCRI presents AdMeTech Foundation's “Dance for a Cure” with a LIVE performance by Jonathan Roberts and Anna Trebunskaya from the ABC hit series "Dancing with the Stars".

Sunday Morning: Our esteemed conference moderator Mark Moyad presents his latest thoughts on diet and supplements.  Snuffy Myers will talk about PSA Relapse. Stephen Auerbach discusses sexual rehabilitation.  Tim Wilson from the City of Hope updates us on robotic surgery.

Sunday Afternoon:  Breakout sessions with extensive Q & A will address the following topics: Diet, Focal Therapy, PSA Relapse, Active Surveillance, Radiation and Surgery. We will close with a round table of experts answering questions from the audience and discussing a selected clinical case.

I hope the rest of you are getting sand in your bathing suits and a mildly irritating sunburn.  See you in September.