A Strategy for Self-Empowerment

BY RALPH BLUM

The slamming emotional impact of learning that you have  cancer—that if it is untreated or defies control it may kill you—is difficult to describe, even when you have been though the shattering experience personally. At moments, you forget, and then truth floods your mind and emotions in a rush, and you are suddenly sick to your stomach with fear. Or the knowledge disrupts your sleep, leaves you starkly awake in the darkness, eyes wide open and staring at the ceiling, anguishing about those who depend on you, those who love you, need you. Everything is different. The world is a changed place. And regardless of what the “best authorities” will tell you, some sneaky, menacing part of you is convinced that the world may soon be going on without you. And that it can happen at any time. Because you have been sentenced, and the cancer will be your executioner.

What will you do?  Face the music—howl, shudder and weep—and then get on with living?  No, nothing of the sort. Actually, there are specific, positive actions you should take. In a previous blog, I described how to deal with the psychological impact of a cancer diagnosis and laid out eight basic rules to help cope with the fear and loss of control that invariably zap you when you are first diagnosed. In this blog I have made a short list of things you need to do in order to become empowered; in order to take back control of your life by adopting a strategy that will play a key role in your recovery. And right up front, let me tell you that acting “brave” or “keeping a stiff upper lip” is not anywhere on that list.

Start by doing the work. Educate yourself. Become an expert on prostate cancer. Learn everything you can about your disease and the various treatment options available to you, the possible side effects, the risks that accompany unwise delay of treatment In effect, become a knowledgeable partner with your doctors in making the best treatment decision for you.

Know the reasons—the pros and cons—for undergoing any test. In particular, make sure that you fully understand the nature of PSA tests, Gleason score, clinical stage and, therefore, your risk category so that you can make a fully informed treatment choice.

Be careful not to let statistics terrorize you. Some prostate cancer survivors I have met would advise you to ignore statistics in any form. You may be given various numerical tables and graphs detailing survival rates; do not feel compelled to read them! Statistics do not determine any individual’s outcome—including yours. As New York Times Science Editor Dana Jennings put it, “I am a person, not a statistic.”

Trust your instincts in selecting your doctor. Do not hesitate to fire any doctor—up to and including world-class specialists with huge reputations—if he or she makes you uncomfortable for any reason, including feeling their lack of sympathy. Choose and stay with doctors in whom you have confidence, and consent only to treatment that you believe in. Consult specialists in urology, oncology, and radiology who have state-of-the-art knowledge and equipment. And who, at the same time, are not “selling” their specialty.

Obtain copies of all your medical records so that you have them for your own understanding, and also to provide them for any specialist you consult. These would include PSA test results, urologist’s notes and reports, biopsy pathology report, written reports and digital copies of any scans, and reports on any of your current other medical conditions.

Do the no-brainer stuff. Adopt and maintain a healthy lifestyle: eat a nutritious diet (with recommended supplements) and obtain sufficient exercise. Like it or not, sweat is a formidable supplement! Boost the quality of your lifestyle and, Scout’s honor, you will not only feel better, more in control, you will actually improve your chances of a good long-term outcome.

And most important, create a supportive environment around you. Surround yourself with positive, optimistic people—both friends and medical professionals—who are convinced that you will get well. And in order to be in touch with others who have survived what you are facing, find a good support group. Behave the way you would knowing you still have a long time to live.

Add all of this together and you have a beginner’s course called “Strategy for Self-Empowerment 101”—a course I have yet to see taught in even the best medical schools!

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.

Technology to the Rescue

BY MARK SCHOLZ, MD

My dad always told me that good ideas are a dime a dozen. The trick is to put the good ideas into motion so that by perseverance and hard work they come to fruition.  This is true of the pharmaceutical industry. Massive investment in basic research has yielded a much better understanding of how cancer “works,” creating opportunities for biochemists to design specific pharmaceuticals that will inhibit cancer growth and spread. However, the fact remains that multi-million dollar clinical trials must be performed before a new medicine can be approved and released by the FDA.

One pharmaceutical company that is making fast progress is OncoGenex.  They have developed an elegant solution for blocking an overactive enzymatic pathway that cancer cells use to protect themselves from chemotherapy. For example, blocking the effectiveness of one popular type of chemotherapy commonly used to treat prostate cancer is called Taxotere. The specific overactive enzyme the scientists at OncoGenex have identified is called clusterin. Cancer cells over-produce clusterin to protect themselves from chemotherapy.

OncoGenex has designed a medicine that accurately targets clusterin.  This new medicine, called Custirsen, sharply reduces the amount of clusterin inside the cancer cells. A preliminary trial, using Custirsen was added to the regimen of 82 men with advanced metastatic prostate cancer being treated with Taxotere (a chemotherapy drug that is commonly used to treat prostate cancer), showed a 40% improvement in survival rate when Custirsen was added to Taxotere--compared to the survival in men receiving Taxotere alone.

Clinicaltrials.gov reports that 141 centers around the country are currently participating in a larger trial combining Custirsen and Taxotere.  This larger trial, involving hundreds of men with advanced prostate cancer, is aimed at proving the effectiveness of Custirsen and getting approval by the FDA for commercial availability. Custirsen is administered as a weekly intravenous infusion.      

Over the course of my 20 years as an oncologist many of the common cancer medicines have proven to be  major disappointments—not very effective and overly toxic.  These earlier agents were discovered and developed through a slow and cumbersome process of trial and error. In that era we had only a vague idea of how the new treatments actually worked.  Most of those agents were broad spectrum inhibitors of cellular growth that resulted in considerable collateral damage on the faster growing normal cells of our body like the hair follicles and the white blood cells.  

Research leading to the discovery and development of newer agents like Custirsen is completely different. These agents are rationally designed and targeted to attack and destroy a very specific part of the cancer cells. As a result, they are not only more effective, they also have fewer side effects.

At last, it appears to be technology to the rescue.