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.

 

 

 

Successful Mentoring Means Everybody Gets Their Needs Met

BY RALPH BLUM

The matter of finding men able and willing to guide newly-diagnosed men who attend support groups requires considerable thought. Leaders often deal with very challenging situations.  For example, how does one handle the men who are attending with a single overriding need, the need to have their personal experience and their treatment decisions validated?

These “confirmation seekers” do not understand how their need for simple black and white declarations distorts the real challenges faced in selecting treatment. The reality with prostate cancer is that it is possible to have a bad outcome even though the “best” treatment may have been selected.

All prostate cancer treatments are potentially dangerous, placing a man’s quality of life in serious jeopardy.  All that the “best” treatment can offer is better odds,  a less risky alternative compared to the options. Guarantees of success are made by charlatans and believed by suckers. 

So in Lenin’s famous words, “What is to be done?”  The dilemma support group leaders face is to address the needs of all the individuals even though their needs may not relevant to the whole group. The solution came from an old friend, David Derris, a man whose decades of experience in guiding support groups have resulted in a sensitive and bias-free skill-set.

According to Dr. Derris a support group leader needs to somehow get across to the newly-diagnosed that scientific information about different treatment options only provides general guidance, not absolute answers.  How does he go about accomplishing this? Derris provides a simple solution: If the support group begins at 7 PM, he invites all new patients members come at 6 PM, an hour earlier. By providing the newly-diagnosed patients a separate session, all options can be discussed free from any pressure from the “confirmation seekers.”

Many newly-diagnosed men have a low-risk situation—a mildly elevated PSA, or a Gleason score of 3 + 3—which makes them candidates for active surveillance rather than immediate treatment. The field of active surveillance is dynamicly changing. New studies suggest that multi-parametric MRI approximates the accuracy of a needle biopsy.  These rapid changes in the way medicine is being practiced demand an open-minded approach in a collegial environment. A low pressure situation excluding the highly opinionated enables newly-diagnosed men to think more clearly and increases their self-confidence.

At the same time, no group wants to lose those experienced men, simply because their agenda includes confirmation of their own treatment decisions. These guys who have “been there, done that” and lived to tell their story have a valuable role to play as witnesses and informants. Sharing their experiences can provide long-term perspectives for the newly-diagnosed. Dr. Derris is to be commended for finding ways to ensure that all members of the group will have their needs met.

I was pleased to learn from Mark that those who now serve, or wish to serve, as support group leaders can, thanks to PCRI, sign up for a course in  “Mentoring” www.pcrimentors.org where they can learn from  the experiences of the best advocates in the field, men like “Snuffy” Myers, Mark Moyad, and John Blasko. Good news and more to come.