Having benefited from prostate cancer support groups since first diagnosed in 2001, I would highly suggest that if diagnosed you find a support group-and quickly! Volunteering my time to support groups over the past 18 years, it is clear to me that men who avail themselves of the resources these groups provide feel more empowered, less overwhelmed and have better long term results, including a better quality of life. Currently, I lead a metastatic support group in Chicago. In addition, I have been fortunate to have met the staff of and volunteered with the PCRI. Their goal of helping educate men so that they will have a better outcome is in sync with my beliefs. Their twice yearly conferences (March & September) are terrific resources for men, their partners and caregivers. The speakers and presenters are top notch in their respective fields. I have seen men come to the conferences scared to death, looking like the proverbial deer in the headlights, and leave empowered with knowledge and a plan of attack for their cancer. In addition, new contacts/friends are made enabling conversations with others who understand the fears and hopes someone on this path encounters. PCRI is a wonderful resource for high quality, up to date, unbiased information. The PCRI is the first place one should visit once diagnosed with prostate cancer. Arming yourself with the information necessary to make the right decision/choices for you is what PCRI can help you do and they do it best.
As an oncology clinical nurse specialist and prostate cancer support group leader for 27 years I have observed the fine work that PCRI does to help men with prostate cancer. Their annual patient conference is an outstanding educational event providing top notch education in a caring, compassionate environment. PCRI is a wonderful resource.
On three occasions I have attended PCRI's fall conference. In mind, it is the best patient conference in the country-medically sound, up to date and patient focused. I facilitate two prostate cancer support groups in Chicago, and a number of our members have also attended the conference one or more times. We always bring good information back from the conference, and I have used the conference videos in my group.
The Prostate Cancer Research Institute (PCRI) is an extremely excellent source of information for men with prostate cancer and for their loved ones. Their annual conference which is held in September of each year draws approximately 800 attendees who are able to hear and interact with top physicians and other professionals in the areas of urology, radiology, pathology, nutrition, genetics, diagnosis, side-effect and many other fields. The presentations are given in lay language so The complexities of the science is easily understood by attendees. Also, there is a chance to meet others from around the U.S. and several other countries who are going through decisions, treatment and side-effects. related to prostate cancer.
My wife, Kathie, and I first attended the conference in 2003 and were amazed at how comprehensive the meeting was. I was diagnosed and treated two years prior to that time and since I had been a cancer researcher for 35 years, I felt that we should attend to gather knowledge on new treatments being developed so that we could share the information with people in our Us TOO International support group in Columbus, Ohio where we live. Since that meeting, we have gone back each year for a total of 14 years and always find new information and make new connections with others.
If each man, who is diagnosed and his spouse/caregiver could attend just one time, they would hear information that could help them in making decisions on how their disease is treated.
In August of 2014 I thought I was flying 2,500 miles to see a doctor to be treated for prostate cancer. Little did I know that I was embarking on an educational adventure and a new career as an advocate for men with this disease. PCRI has been an incredible inspiration to me. I have attended six annual conferences now and leave each year wondering why there aren't such conferences for patients with many other serious diseases. In my opinion, this is how medicine should be practiced - exposing patients to all the experts and information they need to make informed decisions about their health and well being. What a standard and example PCRI sets for the medical community.
Newly diagnosed in 2004, I soon found the PCRI web site and used it extensively to learn about my disease. I met Dr. Scholz and was recruited to volunteer on the PCRI free call in help line. Dr. Scholz devoted countless unpaid hours managing the PCRI and training the Help Line staff so that we could give patients accurate information without offering medical advice. He was always available to us when we did not know the answer for a Helpline caller.
The PCRI continues its long history of providing men with prostate cancer with the latest and best information about their disease. They publish a quarterly newsletter, available for free, that outlines the latest information and research.
A fantastic prostate cancer conference for men with prostate cancer is organized twice a year. PCRI brings in highly experienced and up-to-date doctors to speak about the latest research and prostate cancer best practice.
I am very grateful for all the assistance they have provided to me and to thousands of other men dealing with prostate cancer.
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!
I handle outreach and relations with other nonprofit groups for the Prostate Forum of Orange County, Calif. I've worked with Alex and her staff many times in the last year. We depend on PCRI for accurate and timely research data and help with building our non-profit prostate cancer support group. Alex and her staff are prompt, friendly and hard working. I look forward to working with them again, soon.
I have been going to PCRI conferences for 4 years and this last one was the best of all.
We had 4 speakers talking about Active Surveillance (AS) and I helped with two to them. There is a sea change happening for men on (AS). Very hard working group of people helping patients with good information.
PCRI has been a guiding light for me and innumerable other men navigating AS. Without their annual conferences i wouldhave been lost...
I was diagnosed with prostate cancer in 2002. Soon after, advisors in the local prostate cancer support group made me aware of the information available through PCRI and their associated doctors. PCRI provided me with current information for the diagnosis and treatment of prostate cancer that I was able to use in my understanding of my condition. The information presented on their website and at their conferences is up-to-date and extremely helpful for prostate cancer patients and their practitioners. As a principal senior member of our local New Mexico support group I frequently use PCRI information when helping patients and recommend they attend PCRI conferences.
PCRI - What a great staff of people. Hi I am Larry Gerber with the Walnut Gang (a Prostate Support Group in Fountain Valley, California). This group is dedicated to helping newly diagnosed men, supporting them with up to date information, and supporting them after their procedures.
PCRI is one of OUR most important contributor of information ( w/ a booklet - Prostate Cancer Staging Guide and other material). They also provide a staff of very professional people that can speak to all phases of treating Prostate Cancer. They also have a website - pcri.org - that contains links, videos, and other up to date information on or about Prostate Cancer.
Twice a year PCRI conducts conferences ( Midyear - 1 day in March and and the 3 day in usually in Sept.) These conferences bring together great speakers and up to date information in the world of Treatment of newly diagnosed and reoccurring metastatic Prostate Cancer. There is time to question the speaker personally and to see vendors that support the world of Prostate Cancer.
As a Support Group - PCRI - play a large part of our meetings with topics that come up about Prostate Cancer. Topic about subjects that are contained in the Prostate Cancer Staging Guide. the Hows and Where for the proper treatment that YOU decide on, Questions to ask doctors , all written in layman terms. On the website you have contact numbers that can handle your questions.
PCRI is invaluable to thousands of men with prostate cancer and the people who care for them.
There is no better source for prostate cancer information in the world.
Their YouTube videos are empowering for men and those who are on this journey with them.
The prostate cancer patient conferences in Los Angeles bring together the best medical people in the world to interact with patients and carers.
I cannot recommend them highly enough.
I am both an 18 year prostate cancer thriver and an advocate. I have had the great pleasure of working hand-in-hand with PCRI for over 10 years.
I am a regular attender of their annual LA conference and have consistently found that their programs and conference agenda have been excellent. They are patient oriented and teach men and their caregivers about prostate cancer and how to make better medical decisions.
They empower men and their caregivers with education, humor and an opportunity to meet and learn from 100's of other prostate cancer thrivers.
Unlike many other prostate cancer non-profits they "play well in the sand box" with other non-profits. Clearly, their primary orientation is towards supporting the men with prostate cancer. At the last LA conference I mentioned that my non-profit Cancer ABCs (www.CancerABCs.org) was going to be running a screening program in Harlem and that we were struggling to raise the capital needed for the program. Later that day their Executive Director handed me an envelope with a very generous donation to support our program.
They are tops, care first about patients and are an important and well respected resource for men who have been diagnosed with prostate cancer and their caregivers.
When my father was diagnosed with prostate cancer, was almost impossible to ascertain what treatment plan was truly one tailored specifically for him. We wanted that because my mom had died from cancer and we learned that without that individual/specific treatment, you become a statistic and your chances of truly having a cure or an effective treatment is close to zero.
With the help/guidance/assistance PCRI gives each individual "FOR FREE" (with no horse in the race so as to have skewed opinion), each patient will definitely receive the correct path to follow.
CANNOT recommend PCRI more wholeheartedly-truly more than worth the call!!!
Prostate Cancer is a chronic condition in which a patient's outcome depends heavily on receiving high-quality and personalized care. The PCRI educates men so that they can competently discuss the nuances of prostate cancer and receive the best possible care for their situation. They do this by publishing free educational videos on Youtube, holding a biannual patient conference, and by running a free helpline staffed by educational facilitators.
I called their hotline in 2006 and spoke with Harry (now deceased) who stressed how young men with prostate cancer need to get their surgery done soon with a Dr who has done more than 150 DaVinci robotic prostatectomies.
At age 43, my disease turned out to be Gleason 3+3 stage 2C with lymphatic vessel involvement and a PSA of 3.9. After immediate surgery, the PSA was under 0.01 for 2 years. The cancer is back now with a PSA of 0.013, but I am told my low Gleason 3+3 means my cancer is unlikely to metastasize or kill me.
My surgeon said I would have died at age 45 (I am now 49) if I had not had treatment.