Helpline Corner – from PCRI Insights May 2003
Jim is a 7-year prostate cancer survivor, diagnosed in January 1996. He had Cryosurgery by Dr. Duke Bahn at Crittenton Hospital in May 1996. Jim works part-time for PCRI handling Helpline calls and emails from his home in Peachtree City, Georgia. He also coordinates a Man-to-Man Support Group for the American Cancer Society and is one of the founding Directors of the Georgia Prostate Cancer Coalition. He frequently speaks at awareness events and support groups. Jim can be reached at 800-641-PCRI or firstname.lastname@example.org.
When I was diagnosed with prostate cancer in Rochester, NY, I called a fraternity brother in Pennsylvania who was a Urologist. As a result, I learned that another brother was one of the leading Medical Oncologists in the field of prostate cancer. I called Dr. Stephen Strum, and he provided me information and encouraged me to learn about the disease before making any decisions. My wife and I attended several support group meetings and did a lot of reading. I believe that this led to an excellent result. When I retired in 1998 and moved to Georgia, I decided to try to help others understand the disease.
In 2001, Dr. Strum asked me to work for the PCRI Helpline. Most of the callers I deal with come to me via email. They have included over 400 individuals from 40 states and 22 other countries. Some of these callers want just a single answer to a question but many initial calls or e-mails evolve into a series of exchanges. The inquiries come from: patients, wives, daughters, sons and friends. Also, there are individuals who just want to learn more about prostate cancer and PCRI.
I believe that selecting treatment regimens for PC involves a bit science, a bit art, and a lot of emotion. I think that the first two questions a patient should consider are: Can my cancer be cured(?) and is the cancer likely to kill me(?). Effectively answering these questions requires that the patient understand the likely location of the cancer (organ-confined, extra-capsular or systemic), the extent and aggressiveness of the cancer, and his other health issues that may affect the course of the disease. Once the patient has this level of understanding, he is ready to tackle the issues of treatment success rates and potential side-effects.
For the newly diagnosed, the first priority is to obtain a level of confidence that the cancer is organ-confined. This is accomplished by looking at the diagnostic test values and comparing them to algorithms based on case histories of patients with similar test results. To assist with this exercise, I would want to know: the PSA history (dates and values); the Gleason score (if 7: is it 3+4 or 4+3?); the Clinical Stage (findings from the Digital Rectal Exam); the prostate size; the number of biopsy cores; the number that are positive; the percentage of cancer for each positive core; the location of the positive cores (on one side or two), along with the results of any other testing. Since all of this information is normally available on lab reports, a patient should get copies of them and maintain his own file. The algorithm results, combined with the patient’s age and general health, may suggest some treatment choices or the advantage of further testing.
During my continuing education about prostate cancer, I have compiled a treatment decision matrix that I use to provide suggestions for the patient to discuss with his doctor. I normally suggest papers from the PCRI website (www.pcri.org) or other sources that I feel will help the caller to understand the issues. To assist the caller, I use a number of references. In addition to the PCRI Insights articles and papers, I often utilize A Primer on Prostate Cancer: The Empowered Patient’s Guide by Dr. Strum and Donna Pogliano. I also have a closet full of collected information. If I don’t feel that I have the information required, I use Internet searches with Google (www.google.com) or PubMed (www.ncbi.nlm.nih.gov/PubMed) and inquiries to other members of the PCRI Helpline staff. At times, I consult with members of the PCRI Medical Advisory Board, and I find them very informative and willing to assist.
Working with the PCRI Helpline is very challenging because I am not a medical professional and I do not have a complete view of the patient’s situation. I must try to understand the caller’s level of knowledge and ability to comprehend the complexity of the disease to tailor the information I suggest. My role is to provide education and not advice.
I find working the Helpline to be very rewarding. I am constantly stretching my own knowledge level and I frequently receive the greatest prize of all, the simple words -
“Thank you for your help.”