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Mission


The Prostate Cancer Research Institute's mission is to improve the quality of prostate cancer patients’ and caregivers’ lives by supporting research and disseminating information that educates and empowers patients, families, and the medical community.

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Mission


The Prostate Cancer Research Institute's mission is to improve the quality of prostate cancer patients’ and caregivers’ lives by supporting research and disseminating information that educates and empowers patients, families, and the medical community.

Hello Researcher! We are the Prostate Cancer Research Institute (PCRI), a 501(c)(3) not-for-profit organization that is dedicated to helping you research your treatment options. We understand that you have many questions, and we can help you find the answers that are specific to your case. All of our resources are designed by a multidisciplinary team of advocates and expert physicians, for you. We believe that by educating yourself about the disease, you will have more productive interactions with your medical professionals and receive better individualized care. Feel free to explore our website or call us at 1 (800) 641-7274 with any question that you have.  Our Federal Tax ID # is 95-4617875 and qualifies for maximum charitable gift deductions by individual donors. 


OUR PURPOSE

  • Empowering patients with knowledge of the most effective known treatment options that limit the risks of complications and side effects.
  • Encouraging physicians to stay medically current and help them access and actively engage with top experts in the field.
  • Providing information based upon peer-reviewed medical research, literature, and reputable studies that will enable the patient to knowledgeably participate with his health care team in developing the best individual treatment strategy.
  • Supporting research that can most immediately improve patient outcomes.
  • Advocating treatment options based on the biologic manifestations of the cancer, the patient’s overall health, and the outcomes desired by the patient. 
  • Educating through conferences, seminars, Helpline, website, newsletters, brochures and other publications, the latest tools and updates that may immediately benefit patients and physicians.
  • Involving patient families and loved ones in the treatment plans.
  • Sharing information and opportunities with other prostate cancer organizations and support groups, to coordinate efforts and to support fellow organization’s progress in fighting the disease and its effects upon men and their families.
  • Promote Prostate Cancer Awareness and annual testing of all men over 40.

History


History


Our Story:

In 1996, PCRI was founded by renowned doctors Stephen Strum, MD, and Mark Scholz, MD—both prostate cancer specialists—and Harry Pinchot—a patient—who recognized a need for trustworthy information about prostate cancer. They noticed that the patient community did not have access to information about new treatments, and they were predominantly receiving treatment that was out-of-date, and often times unnecessarily toxic. 

While Dr. Strum and Dr. Scholz pored over medical journals and condensed the research into understandable patient friendly language, Pinchot began PCRI’s Helpline and responded to calls from worried patients and caregivers. He empowered them to find and understand their options and  the information they needed to get the right treatment.

We believe that the best treatment happens when an educated patient works with their doctor to sort through the severity of the disease, the treatment options that are available, and all of the side effects. Dealing with a new diagnosis is complex because all of the parties involved have different interests. By becoming educated about the disease, the patient avoids making decisions that they regret, maximizing quality of life, and survival.

Today, PCRI has evolved to meet new problems that the modern patient faces, but has maintained the same formula that our founders had. We work with leading doctors who present the latest advancements in understandable language at our conferences, on our newsletter, and our website. 

We believe that patients need connection with others who understand the problems that they encounter to become empowered and educated. We foster this connection through our helpline and our conferences. The key to a synergistic relationship between the patient and the doctor is communication, education, empowerment, support and ultimately, hope.

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TESTIMONIALS


TESTIMONIALS


Here you'll see experiences of prostate cancer patients, caregivers, and support group leaders.
Every journey is different, but PCRI has the honor of being there for each one.


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Phil's Story

In February of 1989, my FAA designated Aviation Medical Examiner (AME) first detected an abnormality on my prostate during a mandatory six-month flight physical required for all certificated Air Transport Pilots age 40 and over. I always believed in preventative maintenance for both the aircraft I flew and my own body.  So when my AME suggested I might be wise to undergo a voluntary examination of my prostate, I thought it prudent to participate.


The Centers for Disease Control and Prevention (CDC) were concerned there might be possible adverse effects from undetected prostate cancer in aircraft pilots, ships masters, train engineers, eighteen-wheeler drivers carrying freight across our highways; hence, an urgent request to physicians certificated to perform  voluntary digital-rectal examinations on those patients who agreed to participate. Thus I provided an early warning that something was amiss in my prostate.  My AME performed a “finger-wave” and felt a large swelling on my prostate, leading me to seek and receive early treatment


The first Prostate Cancer Research Institute meeting I attended was probably the first meeting of its kind, held in Long Beach, California. I may have missed one or two of the early annual meetings but I attended nearly all, which is no small feat considering I have been fortunate enough to live in Hawaii for the past 51 years.


The astonishing rate of research and production of new drugs and methods in the diagnoses and treatments of prostate cancer during the past thirty years has been a blessing to me and thousands of other men experiencing prostate cancer.  I am among those lucky men whose diagnosis and treatment became available with the help of a very special and brilliant group of researchers and practitioners at PCRI. Thank you Prostate Cancer Research Institute, and especially Mark Scholz, M.D.

Phillip Buck Olsen
Capt.USAF (Ret), Aviator, Educator, and Writer
Honolulu, Hawaii 


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A Letter From A FaithFul CAREGIVER

THIS LETTER is long overdue, and words cannot even express my deepest gratitude for your organization that has provided so much help to my husband and me. When my husband was newly diagnosed with prostate cancer in 2012, it left me as a caregiver, devastated. I felt hopeless and afraid, with nowhere to turn for support. I remember so distinctly my first call to your Helpline. My anxiety was through the roof, and Silvia Cooper, who is now the most selfless woman I know, assisted me by listening and asking me some tough questions, so that she could provide the best possible resources to us. 

That April of 2012, Silvia changed my life. I had nowhere to turn for support. I just wanted someone to really listen, I had so many questions. Would my husband live? If so, how long will he live? These were just some of the anxiety issues I was facing. Mrs. Cooper was there for me every step of the way. Thank you for all the valuable resources! Based upon those resources, we were able to make a wise, informed decision and choose the best treatment options for my husband. 

Further, PCRI Helpline educated us as to how to use correct terminology when dealing with the urologists, oncologists, and primary physician. Being able to communicate effectively with the team of doctors made all the difference in the world. We felt like we were heard. In my humble opinion as a caregiver, I don’t think we would have received the quality level of care if we had not been educated about how treatment for this disease can have major impacts on one’s health and well-being. 

All I wanted at the time was for someone to listen and care about how I was feeling as a caregiver. During this difficult time, my husband had been dealing with his own issues as it relates to this disease. But I often felt like the pressure was on me. I learned to take one day at a time and take care of myself as well. I needed to remain sane and strong through the ups and downs. 

I also want to thank Bob Each for cheering my husband up. My husband’s PSA is rising again, 4 years after having a prostatectomy. To see the smile on my husband’s face after he and Bob talked was a whirl of positive energy. Bob’s spirit is positively contagious, as his sense of humor about this disease is breathtaking and refreshing. My husband now calls Bob his ‘go-to man’ for any questions he may have regarding recurrence. Thank you, Bob. My husband said: “I will always remember that guy because his sense of humor about this disease helped me look at things in a different way.” So thank you, Bob, for reducing my husband's anxiety when his PSA was starting to rise again. And of course, you reduced my level of anxiety too, which was probably higher than his. 

The work that PCRI does is over and beyond our greatest expectations. As a caregiver, I feel much more confident communicating with my husband’s team of doctors and feel like I can stay on top of the current educational resources, so that my husband can receive the best quality care relating to his disease. Thank you for your time. Thank you for your continued dedication, working tirelessly to provide support to all of us caregivers and patients who are living with this disease and may feel as though there is no light at the end of the tunnel. 

In closing, please know that the work that you all do at the Prostate Cancer Research Institute is not in vain, and you are making a difference in the lives of many people living with this disease. 


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Peter's Story

How can I say what PCRI has meant to me without sounding like a shill? I guess I could say; "It saved my life". But that would be rather dramatic and perhaps over the top. But PCRI and the doctors and professionals I have encountered and learned from, as well as the many patients I have met at the annual conferences with whom I continue to share experience and camaraderie with, have empowered and inspired me to advocate for other men dealing with prostate cancer. PCRI has given me the tools and "know how" to manage my own disease and guide my journey. Rather than feeling like prostate cancer has stripped me of my manhood and left me to the mercy of doctors, PCRI has encouraged me to join a powerful team of physicians, researchers, and patients who are constantly expanding the treatment and management options before us. PCRI is empowerment!

Peter R. Kafka
Maui, Hawaii


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A Loving Wife

In 2015, my husband was diagnosed with prostate cancer that had metastasized into the bone. After nine rounds of standard chemotherapy, his PSA began to rise and things were looking bleak. We then heard about the PCRI, and we attended our first convention where we met Dr. Mark Scholz. He immediately placed my husband on "advanced" treatments which has put the cancer in remission with undetectable PSA. The latest bone scan has shown amazing recovery and healing. Thanks to the PCRI, I still have my loving husband. 

 

 


Clinical Research


Clinical Research


 

PCRI has been involved in major milestones in prostate cancer therapy, milestones that have a direct effect on the quality as well as the length of life for men with prostate cancer. Areas of involvement include: 

BONE INTEGRITY AFFECTS THE NATURAL HISTORY OF PROSTATE CANCER

While the initial observation of bone loss secondary to ADT was not made by PCRI, recognition of the severity of this finding and the potential effect on the course of disease was emphasized by Dr. Strum in the 1997 Seattle Conference on prostate cancer, and again at the 1999 Phoenix Conference on prostate cancer. During those meetings, other physicians heard this presentation and began writing and discussing the importance of bone integrity in PC.

In addition, Drs. Strum and Scholz championed the use of pamidronate (Aredia) in the setting of bone metastases from PC. They were the first doctors to routinely use this medication in such circumstances although no Medicare reimbursement was forthcoming for years. Medicare now approves the use of Aredia in the setting of bone metastases in PC thanks to the efforts of these co-founders of PCRI. PCRI Insights dedicated almost an entire issue to bone integrity in January 1999 (Vol 2, no. 1). The following Insights issue (Vol 2, no. 2) pointed out that the baseline level of Pyrilinks-D (Dpd), a simple urine test, is likely to be a clue to systemic bone metastases if above-normal values were noted prior to the institution of ADT. The importance of bone integrity is becoming more and more obvious with the increasing number of publications on this subject. Most recently, Novartis had its new drug, Zometa, approved for problems with bone resorption.

ANDROGEN DEPRIVATION SYNDROME (ADS)

During the years of observation of hundreds of patients on ADT (androgen deprivation therapy), it became apparent that a spectrum of complaints was being heard from patients that related to lack of male hormone. The spectrum ranged from virtually no symptoms due to ADT to a complete intolerance from the lowering of testosterone. Symptoms included the obvious loss of libido but also muscle and bone loss, anemia, hot flashes, emotional lability with easy crying, changes in hair growth, brittle nails, memory and calculating difficulties, weight gain, frequent aggravation of hypertension, diabetes, nipple hypersensitivity, and breast enlargement. These findings were described for the first time as the Androgen Deprivation Syndrome or ADS at the American Society of Clinical Oncology (ASCO) in Los Angeles in 1998. ADS was the topic presented in PCRI Insights in the January 1999 issue. In that issue, Tables 3a & 3b detailed recommendations for the treatment or prevention of symptoms of acute ADS and chronic ADS. The recognition of ADS as a clinical entity and the need for correction of any of these problems if they become significant remains an area needing more attention and education. If we are to be successful in the use of ADT, then we need to know the downsides of such treatment and institute corrective measures. This is how optimal patient outcome is achieved: accentuate the positive, minimize the negative.

ANEMIA ASSOCIATED WITH ANDROGEN DEPRIVATION (AAAD)

AAAD was described for the first time in abstract form in 1994 by Dr. Strum and was published in full in 1997 in the British Journal of Urology by Drs. Strum, Scholz and others. It is the first description of a new type of anemia commonly found in men undergoing androgen deprivation therapy (ADT). This is related to the known importance of androgens in the development of red blood cell formation and accounts for the differences in the blood count (hemoglobin and hematocrit) seen between men and women. In men with significant AAAD, symptoms such as severe lethargy and weakness, shortness of breath, and development of angina or aggravation of angina may occur. A fall in hematocrit of at least 10% is seen in 88% of men on ADT2 (Two drug androgen deprivation involving an LHRH-agonist and an anti-androgen). This supports the contention that two agents have a more profound effect on lowering androgen levels than one agent. A fall in hematocrit of (25% was seen in 11.5% of all men with 12.8% having severe symptoms of angina, shortness of breath or severe weakness.)

PROCRIT (ERYTHROPOIETIN) CORRECTS THE ANEMIA OF ANDROGEN DEPRIVATION

It is one thing to describe a new anemia and its clinical significance but another level of medicine is needed to define its resolution with a new therapy. AAAD is extremely sensitive to the use of human recombinant erythropoietin (brand names Procrit, Epogen). We presented this at the AUA meeting in 1997 and received the best poster of the day award. We have not had time to prepare the definitive paper on this but our work has already impacted many patients since many physicians are now using Procrit to correct AAAD in patients with symptomatology. Most recently, Procrit is being advertised on television as a way to correct fatigue due to anemia of many causes.

VIAGRA (SILDENAFIL) RESTORES ERECTILE ABILITY IN MEN ON ADT

This conclusion was presented as a Letter to the Editor in the Journal of Urology in 1999. In a study of 21 patients, it was found that erectile function was dramatically restored in the majority of men using Viagra. This is another example of the resolution of one of the ADS findings by continued efforts of PCRI founders. The use of Viagra in this setting is important not only for achieving erectile function but also for preventing penile atrophy that is so common in men on long-term ADT. The Jane Fonda statement “Use it or lose it” applies to this situation as it does to the need for interval exercise of skeletal muscles to prevent muscle loss as well as ongoing use of brain activity to prevent cognitive dysfunction.

INTERMITTENT ANDROGEN DEPRIVATION (IAD)

Due to the importance of ADS and the critical role that physiologic levels of testosterone play in the health of man, a visionary approach to ADT was begun in 1990. This was styled after the approach taken by the pioneers in this field from the Cancer Control Agency of British Columbia- Bruchovsky, Gleave, Goldenberg et al. The approach used by Dr. Strum differed, in that the target PSA on ADT had to reach an undetectable value (<0.05 ng/ml) using an ultra-sensitive assay. The hypothesis here was: “A low level PSA reached on ADT would reflect a sensitive PC cell population that was most likely uniform in nature (homogeneous) and truly androgen dependent.” It makes no scientific sense to be critical of androgen deprivation therapy in men presenting with findings indicative of androgen independent PC? ADT can show tremendous efficacy in populations of androgen dependent tumors but not with androgen independent populations. This is the very nature of ADT_(androgen deprivation therapy) yet most physicians treating men with PC ignore this basic principle.

The most recent publication on the use of two-drug ADT (ADT2) was published in February 2000 in the medical journal The Oncologist and the October 2000 issue of PCRI Insights. The use of IAD3 or three-drug combination therapy (finasteride or Proscar was the third drug added) has been presented at the American Urologic Association in 2000 and at the PCRI-US TOO Conference 2000, but has not yet been submitted for full publication. The results of this approach are striking and should influence current intermittent approaches. The key concept here is to use a therapy that invokes principles of tumor sensitivity as manifested by a sensitive biomarker such as the ultra-sensitive PSA (DPC 3rd Generation Immulite or Tosoh Hypersensitive Assay). Moreover, the IAD3 data indicate that Proscar, in the setting of additional agents such as an anti-androgen (Eulexin, Casodex, Nilandron) combined with an LHRH agonist (Lupron, Zoladex), has profound activity in allowing men to discontinue conventional ADT while remaining only on Proscar. In fact, the average time off ADT in the setting of PSA recurrences following RP or RT is in excess of five years, and the average time off ADT has not yet been reached! All of this progress has emanated from the ongoing research at PCRI.

EARLY USE OF NIZORAL PROLONGS RESPONSE TIME

A landmark paper by Messing et al (Urol Oncol. 2003 Jul-Aug; 21(4):245-54) on the early use of ADT in men with lymph node disease at radical prostatectomy has been discussed at many conferences. One of the concepts underlying this appears to be that earlier use of therapies is more effective. In our study of Nizoral in men progressing after ADT, we also have found a greater response to this treatment if it is initiated before the disease becomes bulky and mutates to resistant cell clones. If Nizoral (High-Dose Ketoconazole or HDK) was begun at PSA levels of 10 or less, the average duration of response was 25 months vs. four months if the baseline PSA (bPSA) was greater than 10. We also demonstrated that the nadir PSA (the lowest PSA) has a bearing on reflecting the sensitivity of the tumor cell population that is being treated. In the Nizoral study, if the PSA nadir was <0.2, the average duration of response was 40 months. If it was 0.2 to 4.0, the average duration of response was 18 months but if it was 4.0-10.0, the response duration dropped to eight months and if > 10, to only four months. Overall, the study points out the efficacy of Nizoral when used early and the excellent response duration seen if the PSA nadir achieved is very low. This is another of the many advances to the quantity and quality of life that PCRI and its staff have made on behalf of the man with PC and his family.

IMPORTANCE OF BONE MARROW SUPPORT IN PATIENTS ON CHEMOTHERAPY FOR PC

This was discussed both at the San Diego PC Conference in 1998 and at the PCRI-US TOO Conference 2000 as well as in the December 1999 issue of PCRI Insights. If we are to achieve milestones in the treatment of advanced PC, we cannot lose men to complications such as infections secondary to bone marrow suppression that result from chemotherapy. Agents like Neupogen or Leukine, used in a preventative fashion, can protect patients from overwhelming infection that can be fatal. Unfortunately, we are seeing too many men on chemotherapy for PC who are not receiving the benefit of modern scientific advances such as the use of these agents. Bone marrow stimulants also include Procrit or Epogen (to correct the anemia secondary to chemotherapy and ADT) and Numega (to correct low platelet counts, thrombocytopenia, secondary to chemotherapy or due to radioactive isotopes like Strontium 89 [Metastron] and Samarium 153 [Quadramet]). PCRI will continue to stress the importance of such measures to physicians and patients alike. In the new millennium, we should not lose any men secondary to overwhelming infections due to marrow suppression.

 
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Financials


Financials


 

Financials


PCRI is a 501(c)(3) not-for-profit education and research organization that advances awareness and monitoring of ever-expanding and evolving treatments available to improve outcomes for prostate cancer patients. The Federal Tax ID is 95-4617875 and qualifies for maximum charitable gift deductions by individual donors. 

PCRI undergoes a yearly GAAP audit to ensure financial responsibility. Annual financial reports can be provided upon request. To request a copy, email: info@pcri.org

We are committed to honoring the donors who give to the PCRI. Over 85% of all donations go to funding these programs: Helpline, Insights Newsletter, Patient Conferences, & Clinical Trials.

CLICK HERE TO DONATE


Best In America Certification

The Prostate Cancer Research Institute is certified as “Best in America” by Independent Charities of America and a member of CancerCURE of America.

Independent Charities of America and CancerCURE of America are national associations whose purpose is to represent charities that meet the highest standards of public accountability and program effectiveness.

The Independent Charities “BEST IN AMERICA” Seal of Excellence is awarded to the members of Independent Charities of America and Local Independent Charities of America that have, upon rigorous independent review, been able to certify, document, and demonstrate on an annual basis that they meet the highest standards of public accountability, program effectiveness, and cost effectiveness. These standards include those required by the US Government for inclusion in the Combined Federal Campaign, probably the most exclusive fund drive in the world. Of the 1,000,000 charities operating in the United States today, it is estimated that fewer than 50,000, or 5%, meet or exceed these standards, and, of those, fewer than 2,000 have been awarded this Seal.

To Make a Charitable Gift to PCRI