Finally the Word is Out

BY RALPH BLUM

In the five years since writing our book, Invasion of the Prostate Snatchers, with the subtitle “No More Unnecessary Biopsies, Radical Treatment or Loss of Sexual Potency,”  Mark and I have continued advocating for changes in the management of low-risk prostate cancer. It has been an uphill battle, mainly because most men find it hard to believe that anything called “cancer” can be safely monitored, probably for years, even—in my case, for example—for decades.

Now, at long last, it appears the word is out: Finally more men are opting for regular, close monitoring, while holding off on aggressive treatment unless the disease progresses.  Instead of yielding to an overwhelming desire to "cut the damn cancer out and be done with it," men are increasingly choosing "active surveillance" and by so doing, dodging the two bullets of erectile dysfunction and loss of urinary control.

In a study published in JAMA this month, Dr. Matthew Cooperberg and Dr. Peter Carroll of the University of California, San Francisco, drew on data from 10,472 men with localized prostate cancer, who were treated at 45 urology practices in 28 states, between 1990 and 2013. The use of active surveillance among men with low-risk cancer ranged from 7 to 14 percent from 1990 through 2009, then increased to 40 percent between 2010 and 2013. Among men age 75 or older, 76 percent opted for active surveillance.

Rates of active surveillance in the U.S. have historically been lower than in other countries. In Sweden, for instance, 2013 figures indicate that active surveillance was used to manage 78% of men with very low-risk disease, and 59% of men with low-risk disease. Unfortunately, men in this country have been motivated to submit to radical treatment for what is typically a non-life-threatening condition.

Not many years ago, a PSA reading of 4.0 was considered "abnormal," and triggered an immediate biopsy regardless of age or prostate size. More recent studies show that microscopic amounts of low-grade prostate cancer are so common, that even when the PSA is totally normal, one-fourth of men will have a positive biopsy.  So if the biopsy was positive, inevitably it led to radical treatment; treatment that, in most cases, was unnecessary. Fortunately this is changing.

Some men, however, are still frightened into unnecessary aggressive treatment. They don't want the stress of regular check-ups. They just want to be rid of the cancer. But fear is an untrustworthy advisor. What they don't take into account is that men who have chosen surgery also have to be monitored regularly to make sure their cancer stays in remission.

So if you are blessed with the low-risk, slow-growing form of this disease—the tortoise of prostate cancers— wait and go slow. Your three most important considerations are quality of life, quality of life, quality of life. With active surveillance you avoid the toxic side-effects of radical treatment, without sacrificing the chance for a cure, even if the disease progresses.

In Praise of Feisty Patients

RALPH BLUM

I have learned through personal experience that there is an art to being a patient. You must choose wisely when to submit and when to assert yourself, especially if you have just been diagnosed with prostate cancer.

Because prostate cancer is so common, and in most cases so slow growing, to submit  to any form of radical treatment without doing your due diligence, could be a serious 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 to put off treating prostate cancer.

However,  let’s take a moment and put things in perspective. Fifty percent 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 often 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, the most often unnecessary, and the one most likely to leave you incontinent and/or impotent.

My own experience with urologists has not always been a happy one. Twenty-five years ago, a Honolulu urologist 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.

My decision to engage in watchful waiting, monitor the cancer and take the time to educate myself, has given me almost three decades of quality time with my wife that almost certainly would have been lost or diminished if I had committed to immediate surgery. The feisty, “difficult,” assertive patient, the one who challenges the doctor, is often the one who has the best outcome.

If I had it all to do over again, I would seek to change nothing.

 

A New Model of Treatment

BY RALPH BLUM

Once you have been diagnosed with prostate cancer, I can’t stress too often the importance of being an active participant in your own cancer care.

All too often, the old model of care involved rushing mindlessly into whatever radical treatment your doctor recommended, often without understanding your options, and nervously hoping that the treatment the urologist chose would get rid of the cancer. The entire process was focused on the tumor; minimal attention was given to you as a person, or to the underlying factors that may have predisposed you to getting the prostate cancer in the first place. In fact you were, as we say nowadays, “disempowered”- you played no role in your own healing.

Conversely, the emerging new model of cancer care recognizes the important role you can, and should, play in your recovery. The emerging model understands that simply attacking the cancer is not enough; that when you feel empowered, when you regain a sense of control by engaging in your own recovery, it optimizes your body’s healing potential. Unfortunately, not all cancer specialists have adopted the new model.

So now that you know for sure that you’ve got prostate cancer,  what do you need to do?

First, find a cancer doctor who gives you confidence, listens to you, and who understands that you need to take the central role in your treatment choices and recovery process.  Then, do your own “due diligence” thoroughly research all your treatment options, check, and recheck with a second opinion your doctor’s recommendations, and  only then, choose the treatment program you believe in.

Equally important, your role in your recovery doesn’t stop with your choice of treatment. Cancer survivors agree that taking charge of their entire health and well-being by focusing on nutrition, exercise, support-and-attitude, enhanced their immune system and laid the foundation of the healing process.

The emphasis on lifestyle choices has been one of the most significant shifts in cancer care in the last decade. A cancer diagnosis is a heads-up to launch a nutritional makeover, and a regular, moderate exercise program. Nothing extreme is called for.  But it’s not enough to depend solely on medical treatment to fight your cancer.

When it comes to support and attitude I realize I’m getting into territory where most men are inclined to think, “B.S!”  But plenty of research demonstrates the benefits of supportive friendships, and intimate relationships that support and nurture us. And a great many cancer survivors report that they a direct link between a positive attitude and successful recovery.

The emerging model of cancer care recognizes that psychological and emotional states are as important to your healing as nutrition and exercise. A sense of optimism and hope strengthen and inspire the will to live, and actually impact the body on a physiological level. Inevitably there will be times during treatment when you feel fearful, depressed, exhausted and yes, hopeless. When that happens, instead of going into denial, allow yourself to feel the feelings, but refuse to get stuck in negativity. Surround yourself with supportive friends, believe in your treatment, and know that you are making lifestyle choices that support your healing.

It cannot be stated too often: reclaiming a sense of being in charge of your life and your health provide a vitally important foundation for the healing process— and the rest of your life.

The PCRI Conference: Standing in the Gap in a Woeful Medical Situation

MARK SCHOLZ, MD

September is prostate cancer awareness month. Every year the PCRI hosts a three-day educational symposium for patients.  “For patients?”  But people always ask, “What about doctors?”

In the cancer world, prostate cancer is the last bastion of surgeons (urologists).  Surgeons, as it happens, are the primary supervisors of this, the most common type of cancer in men.  Thirty years ago all cancers were managed by surgeons because back then surgery was the only available treatment. While the true cancer specialists of today—medical oncologists—have assumed primary responsibility for every other type of cancer, urologists continue to take primary responsibility of caring for men with prostate cancer.

Therefore surgeons tenaciously hang on to the “way it has always been done,” even though surgery is usually the least effective way to treat prostate cancer. In fact, despite tremendous improvement in other methods of treatment, the reliance on traditional surgery has been on the rise.  The excitement surrounding robotic surgery is probably the reason for the increase. Sadly, numerous scientific studies showing that older surgical techniques work just as well have not changed urologists’ minds.

The theme of this year’s PCRI conference—Quality of Life—naturally emphasizes alternatives to surgery.  Active surveillance, seed implants, IMRT and focal therapy all have survival rates at least as good as surgery, but with far fewer side effects.

This year the conference will feature its very first celebrity—actor Ryan O’Neal.  Mr. O’Neal had such excellent results from his focal therapy that he has volunteered to attend the conference and share his experience.  His story will be featured in the next issue of PCRI Insights which should hit the stands next week.  PCRI Insights is a free quarterly newsletter published by the PCRI.  You can sign up at the PCRI website and have it emailed to you.

Back to the question, “Why patients?”  Basically, Dr. Stephen Strum and I founded the PCRI to educate patients because unlike the surgeons, patients are highly motivated to learn and embrace new options in therapy, especially when the new therapy can convincingly be shown to be equally effective and less toxic.  A patient-orientated approach has proven successful, and the popularity of the conference continues unabated.

So far I have only been commenting on treatment issues related to the newly-diagnosed men with early stage disease. What about men with advanced disease?  Believe it or not urologists are still managing the majority of men with advanced disease, even when metastases are present, and despite the fact that in the last few years  five new products—all of which are proven to prolong life—have been approved for use by the FDA to treat advanced prostate cancer.

Do urologists know how to administer these new treatments?  Are they even aware of them? The complexity of managing advanced prostate cancer has increased exponentially due to the availability of these new treatment options.  The question is: How can urologists, who typically manage prostate cancer in their spare time, keep up with all these new developments when they also have to treat so many other serious issues—kidney stones, urinary incontinence, erectile dysfunction, kidney cancer, bladder cancer, testicular problems, urinary infections—in addition to the time they spend in the operating room  performing various types of surgery?

I would suggest that it is not safe to abdicate your health choices to a urologist. To inform yourself about your options, plan to attend the PCRI Conference on September 6^th, 7^th & 8^th at the LAX Marriott.  Tickets can be purchased on line at PCRI.org.

Surgery vs. Seeds vs. IMRT

BY MARK SCHOLZ, MD

 

Many men with Intermediate-Risk prostate cancer consider treatment with radiation or surgery. Treatment selection is influenced by age and preexisting status, especially as regards baseline sexual and urinary function. These days “surgery” usually means robotic surgery rather than the older, “open” procedure. Brachytherapy (radioactive seeds), and intensity modulated radiation (IMRT) are the most widely used types of radiation.

 

Cure Rates

All treatment options result in similar cure rates assuming the best physicians and technology are used. If any single treatment can be considered to have a slight advantage, it is brachytherapy. Seed implants deliver a somewhat higher dose of radiation, possibly with slightly better accuracy. All types of radiation have a slight cure-rate advantage over surgery because radiation treats a small margin around the gland. Surgery, especially when extra-capsular disease is present, may leave cancer behind, an unfortuante situation called “a positive margin.”

 

Quality of Life

Since cure rates are equivalent, the main criteria for selecting treatment are side effects. Table 1 lists the risks faced by a 65-year-old with good erectile function and without preexisting prostate problems. Risks are adjusted up or down based on a man’s age and his sexual and urinary function prior to treatment.
 

Table 1 Long Term Side Effects

Impotence Incontinence Climacturia* Urethritis Stricture** Proctitis Surgery 50% 8% 15% - 5% - Seeds 30% 1% - 10% 2% 1% IMRT 30% 1% - 4% 2% 2% *Climacturia is the ejaculation of urine rather than sperm **Stricture is a urethral scar

Short Term Side Effects
Some of the long-term effects noted in Table 1 also occur short term. All men are impotent after surgery though 50% eventually recover some functionality. Urinary symptoms, termed “urethritis,” occur in two-thirds of men who undergo brachytherapy, usually lasting a couple months. Proctitis symptoms lasting one to two months occur in about half of the men who are treated with IMRT.

Treatment for Long Term Side Effects

Shrinkage and shortening of the penis due to surgery may be partially averted with early use of Viagra, Cialis or Levitra, and when necessary, the injection of prostaglandins. For treating impotence or incontinence, patient satisfaction is about 85% with a surgically implanted penile prosthesis and 60% with a surgically implanted artificial urinary sphincter. Chronic urethritis, a non-healing radiation burn of the urinary passage, manifests as pain, frequent urination, and a compelling urge to urinate right now. Proctitis side effects can be described similarly, but affecting the rectum. Palliative treatments for chronic urethritis and proctitis are only partially effective.

 

Further Aspects of Surgery and Radiation

 

Surgery: The surgical skill of urologists varies and is measured by how frequently cancer is left behind after the surgery, termed a positive margin. The best surgeons average a 10% rate. Studies show that many urologists, even at reputable centers, leave cancer behind up to 50% of the time. Prostate removal gives information about the size and grade of the cancer, helping to improve the accuracy of projections about future relapse. Surgery also simplifies PSA monitoring, since unlike radiation, there is no residual prostate gland producing PSA.

Seeds: Brachytherapy with permanent seeds is an outpatient procedure. Temporary, high-dose-rate (HDR) brachytherapy requires an overnight stay in the hospital. Men with preexisting urinary problems or glands over 60cc are more prone to develop urethritis from brachytherapy. A benign PSA rise after the implant, termed a “PSA Bump,” occurs in 30% of men and can engender considerable anxiety.

IMRT treatment requires two months to deliver. Radiation beaming through surrounding organs may increase the risk of bladder and rectal tumors, though the risk is clearly less than one percent. The biggest risk besides impotence is proctitis. In the future, the injection of hydrogel between the prostate and the rectal wall may eliminate this risk (Hydrogel is pending FDA approval).

Cyberknife and Proton Therapy: Cyberknife is like IMRT but treatment is over one to two weeks rather than two months. Proton therapy is also similar to IMRT except it fires heavier subatomic particles (proton vs. photon). Proctitis rates are reported to be slightly higher with either of these two modalities.

Combination Radiation with Seeds and IMRT: Men with High-Risk disease and even some with Intermediate-Risk are treated with a combination of Seeds and IMRT. The side effects of Seed/IMRT combinations are similar to those of seeds alone.

The Outdated Sequencing Argument
As stated at the outset, cure rates are high with both radiation and surgery. Arguments touting surgery as the “Gold Standard” were true ten years ago when suboptimal radiation resulted in lower cure rates. Regrettably, to this day, many surgeons are still claiming that sequencing surgery before radiation is advantageous. This outdated thinking prioritizes planning for relapse, forgetting about the need to focus on quality of life. The goal is to be cured with the first treatment and be spared the side effects of additional rounds of therapy.

Taking Time to Decide
Prostate cancer is slow moving condition. There is no need rush to a decision. Radiation or surgery cures men with Intermediate-Riskprostate cancer 70-90% of the time. Even if a relapse occurs, salvage therapy usually gives a normal life expectancy. Additional options, besides surgery and radiation, can also be considered for men in the Intermediate-Risk category including active surveillance, focal therapy and intermittent hormone blockade. However, these treatments are outside the medical mainstream and beyond the scope of this short blog.