Patient Empowerment: 2014 PCRI Annual Conference

GUEST BLOGGER: This blog is from the Communications Director of the PCRI, Peter Scholz

Patient Empowerment is the PCRI’S theme for the upcoming 2014 Patient Prostate Cancer Conference this September 5^th, 6^th and 7^th.  This conference is a unique event for patients to interact closely with experts and leaders in research, and at the same time, connect with other patients who have “been there and done that.” This is a weekend to get better informed and empowered to make confident choices.

Cancer care is advancing so rapidly that it takes a team effort between you and your physician to achieve the best care. For the average patient it is overwhelming to try to stay up to date with the latest clinical studies, journal articles, and protocols. Often the best place for information is an event like this that specializes in distributing the type of material patients can understand.

That’s where our invited experts come in—specialists from around the world presenting the latest developments in prostate cancer care, but not in the language of doctoral medical jargon. Rather, the lectures and presentations are presented in a way that can be understood by patients, so they can utilize their new information and obtain better care. At the conference you can expect many entertaining and informative presentations and find information you would be hard pressed to gather and interpret on your own.

This year’s program will stress breakthroughs in imaging, immunology, hormone therapy and staging. The Saturday schedule is structured around the PCRI Shades of Blue, a program that simplifies the understanding of prostate cancer by dividing into five broad categories. For the SKY Shade there will be a presentation on Active Surveillance; for TEAL and AZURE categories, Dr. Anthony Zietman, Associate Director of Radiation Oncology at Harvard Medical School will give a presentation about state-of-the-art radiation; for ROYAL we will have a discussion about all the new medications for advanced disease by Dr. Maha Hussain, the Director of Clinical Research from the University of Michigan. Dr. Mark Scholz, the Executive Director of the PCRI will outline the best approach to INDIGO. Dr. Mark Moyad, our moderator, will also be speaking about supplements and diet and how they can lead to increased survival and better quality of life.

The Sunday “breakout” format will enable you to interact directly with the speakers in intimate Q and A sessions while having actual conversations and back and forth dialogue with them. Also, throughout the weekend, the concepts and topics can be further clarified in support group meetings with knowledgeable patient advocates.

Last year’s feedback was glowing with comments like, “Thank you for amassing so many experts in one place!” or “This is one of the most interesting conferences I have ever attended.” And, “I wished this information had been available before my husband and I had to make decisions.”

The PCRI Conference is for your empowerment. It will give you hope and a new confidence to face the challenging task of making important treatment decisions that will impact you for the rest of your life. 

Sign up online: http://prostate-cancer.org/events-calendar/conference-2014/
 

Shades of Blue, Trying to Simplify a Complex Situation

MARK SCHOLZ, MD

How can one disease be so vast?  Actually, it really isn’t one disease; there are hundreds of variations: Prostate cancer can be slow or fast growing, responsive or unresponsive to treatment, metastasizing early or not metastasizing at all.  In fact, selecting treatment for prostate cancer would be simpler if these extreme “either-or” types of examples I just cited were common. In reality, most men’s cases are not so extreme, they lie somewhere in the middle.  Selecting the best treatment, one that matches each variety of prostate cancer, is a really big challenge. Therefore, the process begins by trying to understand the disease as well as we can.

Characterizing the Disease
People often assume that differences in the way cancer behaves—life threatening vs. benign—comes from observing the same illness at different time points.  What’s often misunderstood is that distinct varieties of prostate cancer also exist. It’s not all one disease. This doesn’t mean that the stage of disease is unimportant. It’s just not the whole picture.  Patients frequently ask, “Am I stage A, B, C, or D?” without realizing the lettering system is just a description of what the surgeon feels during his finger exam. PSA and the Gleason grade are just as important as the stage of the disease. What can be confusing is that no single element comprehensively defines the disease. For example, one man with a higher PSA may do well while another man whose PSA is low may do poorly.

A Widely-Accepted Classification System
Therefore, a classification system to help predict cancer aggressiveness requires a “grid” that incorporates multiple prognostic elements—the letter-stage, PSA, Gleason and scan results.  Dr. Anthony D’Amico from Harvard is credited with developing the modern system that uses PSA, Gleason and stage to divide newly-diagnosed prostate cancer into low, intermediate and high-risk categories.

Building on the D’Amico system, and to further highlight the differences between categories, the Prostate Cancer Research Institute (PCRI) has named the risk categories with different Shades of Blue* and expanded the grid to include two more categories: men with disease relapsed after treatment with a rising PSA and men with metastatic disease or disease that has become resistant to hormonal therapy.

The Five Shades of Blue:  

Sky for low-risk
Teal for intermediate-risk
Azure for high-risk
Indigo for PSA-relapsed disease after treatment
Royal for men with metastases or hormone resistance

Does the system separate men into distinct categories?  Yes. For example, in a study published by Dr. Timothy Wilt in the New England Journal of Medicine, 731 men volunteered between 1994 and 2002 either to have immediate surgery or observation alone.  The subsequent outcome showed higher cancer mortality with in men in a higher-risk (Azure) category compared to Sky or Teal. It also showed an 8% improvement in ten-year survival rates for men in the Azure category when they underwent surgery (rather than observation).  Surgically-treated, intermediate-risk men (Teal) showed a 10% reduction in the incidence of metastases compared to the men who did not have surgery. Men in the low-risk category (Sky) showed no difference in mortality or metastases with or without treatment. Dr. Wilt’s study, therefore, went beyond merely validating the predictive ability of the D’Amico staging system. The study also provided a measure of the degree of benefit associated with doing surgery.

General Treatment Recommendations

While there are no absolute rules for treatment, as a starting point, here are some general guidelines:

Sky (low-risk): observation or monitoring with active surveillance

Teal (intermediate-risk): monotherapy, limiting treatment to a single therapy such as IMRT or surgery or brachytherapy

Azure (high-risk) combination therapy with IMRT, brachytherapy and hormone blockade

Indigo (relapsed-disease): Treatment intensity tailored to the location in the body of the relapsed disease and to the PSA doubling time rate

Royal (advanced-disease): Multimodality immunotherapy, hormonal therapy, chemotherapy and radiation sequentially or in combination

The message is that before treatment can be selected what we are treating needs to be accurately defined.  The starting point, therefore, is to begin with dividing prostate cancer into five broad categories or Shades of Blue.  By doing this, the number of treatment options can be narrowed down and finding the right treatment becomes easier.   

PCRI: Prostate Oncology for the Masses

BY MARK SCHOLZ, MD

Dr. Steven Strum and I, medical oncologists who specialize in prostate cancer, founded the Prostate Cancer Research Institute (PCRI) in 1996. I still support the PCRI by donating my services as Executive Director. Through its conferences, helpline, newsletter and website, PCRI helps patients learn about optimal prostate cancer therapy.

Why is the PCRI important? “Modern” prostate cancer treatment, which is inherently biased toward surgery, is actually a throwback to the past. Prostate cancer is the last remaining type of cancer to have surgeons (urologists) directing care. Thirty years ago, because surgery was the only type of treatment available, cancers­ such as breast, colon, lung, pancreas and bone, for example, were supervised by surgeons. Now, every cancer (except for prostate cancer) is handled by medical oncologists—cancer specialists trained in a multimodality approach.  “Multimodality” means that all treatments (or treatment combinations) get equal consideration. Medical oncologists are trained to tailor therapy to the individual characteristics of each patient’s disease.

The problem is there are less than 100 prostate oncologists in the United States to serve more than three million prostate cancer survivors. That works out to a ridiculous ratio of 30,000 patients per prostate oncologist. To give you an idea of what a manageable patient-to-doctor ratio would be, at Prostate Oncology Specialists where I work with two other full time prostate oncologists, we have 1,600 active patients, a little more than 500 patients per oncologist.

Is prostate cancer an unusually simple cancer to manage?  No. It’s actually quite complex. What we term “prostate cancer” varies between extremes. There are low-grade forms that can be safely monitored; more serious types that require combinations of radiation and hormones; and “in-between” types that defy easy answers.  For men with the advanced, metastatic type of prostate cancer, the FDA has approved four new treatments in the last two years, more than I have seen in my last 20 years as a prostate oncologist.  Sequencing, timing, and combining these new treatments require skills few surgeons have time to master.

Sadly, simply providing up to date and accurate information to patients is not enough. Prostate cancer is not only complex, it is emotional. Patients and their families are all too often so frightened they need to be “talked down” from their emotionally charged state with professional support and encouragement. They can’t even begin to analyze their situation clearly until they calm down.

Also, when suddenly diagnosed with prostate cancer, many men have serious misconceptions that even professionals struggle to counteract. Three fallacies make men easy prey to a “just cut it out” mentality. First, men logically assume prostate cancer is just as dangerous as other cancers (see my October2012 blog, “The Un-Cancer”).  Second, men think the doctor who did their biopsy, their urologist, is a cancer expert. Third, they believe they need to make a quick decision before the cancer spreads. These mistaken beliefs mean men are at a severe disadvantage when seeking the truth.

PCRI tries to counter these problems by providing expert “one on one” support thorough its helpline and the online Blue Community. The PCRI has also recently initiated a new Mentor Program providing in-depth education for leaders of support groups.  We want everyone to understand their situation from the perspective of a prostate oncologist.  However, the magnitude of the task is daunting.  Every year almost a quarter of a million men— 650 men daily—get the shocking news that they have prostate cancer.

Even though this is my 17^th year serving the PCRI and the prostate cancer community, I am more energized, more focused and more determined than ever to make sure men with prostate cancer have the opportunity to get the best possible treatment.

However, the PCRI mission always needs financial support. PCRI heavily utilizes graphics, editing, internet and video to fulfill its mission. We also have expenses for bookkeeping, fundraising and grant writing. Every year PCRI undergoes a stringent “GAP” audit, documenting that more than 90% of dollars donated go to fund programs while less than 10% go to administrative or fundraising expenses.

If you are in a position to support the PCRI mission, your help would be greatly appreciated. Every donation increases our ability to get out much needed information to the prostate cancer community.

 

 

 

The Un-Cancer

BY MARK SCHOLZ, MD

It’s easier to teach a proper golf swing to a true beginner than to someone who has previously developed bad habits that are now ingrained.  The young mind of a child learns a new language much more easily than the cluttered mind of the adult.  Good first impressions are valued so highly because we all know how hard it is to undo a bad first impression.  The biggest challenge of educating people about prostate cancer is overcoming their preconceived notions—what they already think they know about cancer.

What is prostate cancer?  Many say it’s harmless, that “you die with it, not from it.”  But how does that jibe with 28,000 deaths annually?  One reasonable conclusion is that prostate cancer occurs and acts in a variety of different ways. The Prostate Cancer Research Institute (pcri.org) recommends dividing prostate cancer up into five categories or Shades of Blue. This is helpful both for understanding the varieties of prostate cancer and for guiding the choice of treatment.

However, even though there are many forms of prostate cancer, this fact fails to convey how differently prostate cancer as a whole acts, compared to other cancers.  Why is it so important to understand this difference?  First of all, surgery—which is everyone’s first thought when they hear the word “cancer”—can have dire consequences.  For example, surgery almost always causes partial or complete impotence. Second, new research published by Dr. Timothy Wilt in the July issue of this year’s New England Journal of Medicine, shows that forgoing immediate treatment and embarking on a program of close monitoring known as “active surveillance,” has exactly the same survival rate as immediate surgery.  Bottom line: For far too many men, immediate treatment for prostate cancer is not only damaging, it is often unnecessary.

Forgoing treatment with something called cancer is certainly counterintuitive.  In order to support the case for monitoring, let’s compare the statistics for prostate cancer with those of colon cancer.

	Prostate Cancer:  The “Un-Cancer”	Colon Cancer: A “Typical” Cancer	Difference Factor
Deaths Annually	28,000	26,000	1 : 1
New Cases Diagnosed	241,000	73,000	3.5 : 1
Mortality Rate	8.5%	35.5%	4.2 : 1
Average Survival if Relapse Occurs	13 Years	13 Months	12 : 1

As the table shows, men diagnosed with colon cancer are not only three and a half times more likely to die from the disease, they die twelve times more quickly.  Unfortunately, almost all cancers—lung, pancreas, stomach, gallbladder, kidney, brain, bone, etcetera—approximate the behavior of colon cancer rather than prostate cancer.

The fact remains that it is logical for the general population to be terrified by the very idea of cancer.  When you consider all the different types combined, cancer is the second most common cause of death, just below heart disease. The risk of death from most cancers is high and if a cure is not obtained, death follows all too quickly. The unfortunate men who die from prostate cancer make the “news,” even though it may not be generally understood that it took 13 years for those men to succumb. However, the fact remains that there are 2.8 million prostate cancer survivors presently living in the U.S. That should be news too.

Ninety-one and a half percent of men diagnosed with prostate cancer will have a normal life expectancy, and will die of natural causes. The eight and a half percent who die from prostate cancer will live an average of 13 years, with this number expected to increase dramatically over the next ten years, thanks to continuing improvements in medical technology.  Treatment can definitely improve survival in selected cases.  However, it would seem that only men in the high-grade category are likely to benefit consistently.

The encouraging facts about prostate cancer outlined in this blog have been compiled to help men realize that survival rates with prostate cancer are extremely favorable compared to other types of cancer.  Now that studies show that survival with active surveillance matches that of immediate surgery, a great many men should take heart, and resist all efforts to rush into a treatment with such uncertain rewards but such predictable and devastating side effects. 

Managing Too Much Information—The PCRI’s Approach

BY MARK SCHOLZ, MD

Knowledge is power. And what you don’t know can indeed hurt you.  However, in this modern information age, the deluge of unfiltered data can be completely overwhelming. How can patients without professional training sort it all out and distil for themselves a sensible plan of action?

No one can offer a quick fix.  Prostate cancer is too complex and there are too many behind-the-scene conflicts-of-interest simply to trust the first smiling doctor you encounter.  Although you can’t escape from the responsibility of doing your homework, you had better make sure you’re in the right classroom.

Because prostate cancer is so varied in how it affects men, PCRI has divided the disease into five major categories, which we have called Shades of Blue.  This division emphasizes the extreme diversity of this infirmity we call prostate cancer, a condition that ranges from totally innocuous to fatal.

In the process of learning about prostate cancer, failing to stick to the domain of a single Shade is like wandering randomly between five classrooms that are teaching five different subjects. Is it any wonder there is so much confusion? Patients don’t need more information. They need unbiased information that is tailored to their specific needs, i.e. their Shade of prostate cancer.

When you think about it, it’s obvious why we need a new approach to information management. In the old days, new discoveries came slowly. The doctors who were thought leaders had plenty of time to attend medical conferences to discuss disease management in a leisurely fashion to achieve broad consensus. Those days are gone forever. In this era of rapidly changing technology, consensus about a treatment probably means the treatment is out of date. These days, new treatments are vetted by experts on primetime news. Unfortunately, breaking news, due to its fundamental need to be controversial and attract an audience, tends to emphasize fringe thinking.

Relying on traditional university centers to define a sensible, middle-of-the-road plan of action is also no longer possible.  Prostate cancer is big business and most large treatment centers specialize in one form of therapy such as radiation or surgery to the exclusion of all the others. Studies show that large specialty centers do indeed yield better quality than centers treating fewer numbers of patients. However, the large centers are understandably biased toward recommending their specific form of therapy. Their advice about which treatment to select is all too often tainted by their financial conflict of interest.

The PCRI’s mission is to fill the cavernous need for unbiased information that has been created by the accelerated rate of technological discovery. Rapidly exploding technology and new treatments are a great blessing as long as these powerful tools are applied selectively and appropriately to individuals who can benefit, while withholding potentially toxic treatments from those who won’t benefit or may actually be done some harm.

With the annual PCRI conference rapidly approaching, PCRI will continue striving to fulfill its mission to provide up-to-date and scientifically-based information that helps patients and their families sort through the ever expanding number of treatment options.