Help Line Corner – from PCRI Insights August 2003
The wife of a prostate cancer patient, she works for PCRI from her home in Sanibel, Florida, handling Help Line calls, e-mails and speaking publicly. Jan and Dominic’s story of empowerment has caught the attention of local newspapers, magazines, and TV stations. Her passion is to spread education about important PC issues throughout her neighborhood of Lee County (and beyond). Jan can be reached at 800-641-PCRI or firstname.lastname@example.org.
If a diagnosis of prostate cancer has caught you by surprise, interrupted your life, rearranged your world, and left you questioning things that you once took for granted – then you are just like me.
My husband was diagnosed with PC in March, 2000, with a PSA of 7,096. He had bone metastases to his hips, ribs, spine, and skull. We quickly discovered the necessity to research, learn, and become involved in his treatment decisions. The search for information often left me overwhelmed and confused. Enter PCRI. A friend supplied me with some excellent materials from the 1999 PCRI National Conference, which he had recently attended. A combination of written articles and recorded presentations helped to clarify most of our key issues and give us a true sense of direction. I began to correspond with PCRI staff, including co-founder Dr. Stephen Strum, who eventually offered me a position as one of the Help Line staff.
My job with PCRI has offered me a fulfilling opportunity to continue learning, and to share what I have learned with others who are facing similar dilemmas. Every person brings different desires and needs into the equation, and every cancer presents its own individual biology. Therefore, I try to learn from each new encounter. Perhaps the most unsettling reality I have learned is that the medical field is undergoing dramatic changes. Premiums for malpractice insurance have more than doubled in some states. Physicians are often pressured by insurance companies to rush through appointments and prescribe treatments according to their inadequate guidelines. Medical errors have become such a problem that we now have a “National Patient Safety Awareness Week” in March. In the words of a recent Life Extension magazine article, “Don’t Blame the Doctors.” Instead, be aware that YOU must become empowered with valid questions and scientific data to discuss with your physician. YOU must know your insurance policy and exactly how it works. PCRI is here to help.
Here are two examples of how I have assisted callers in becoming empowered patients, involved in their own health care.Â
MG was 68 years old, in good health, but had a family history of prostate cancer, a rising PSA, and a low free PSA % that concerned him. Over the last two years, he had undergone two biopsies that proved to be negative, and he continued to have a normal DRE. However, he still felt dissatisfied. I shared with him several abstracts from peer-reviewed literature which showed that false negative rates for standard sextant biopsies can range from 20% to 30% and that biopsy technologies with higher rates of accuracy were available. MG decided to travel to Michigan to have a biopsy performed by an artist in color Doppler ultrasound targeting technique.
His suspicions were correct! Prostate cancer was discovered in 5% of one of the targeted cores. The Gleason score was confirmed by an expert in prostate pathology as 6 (3,3), and no evidence was found of perineural invasion or extracapsular extension. MG decided to further his empowerment by requesting a DNA ploidy on his pathology and a PAP blood test. During this time of testing and decision making, he began taking supplements such as lycopene and selenium + vitamin E, which research has shown to have some effect against PC. MG truly became an educated patient, and has benefited by achieving early detection through following his instincts and pursuing his own medical screening with tools of excellence.
BR was 72 years old, and a recent PC patient who had already done his own research and chosen treatment with an artist in the field of radiation. After reading articles from Insights, BR felt that there was much more to learn about this disease. His biggest concern was his overall health and prescription regimen in relation to prostate cancer, as he also struggled with cardiovascular issues. I shared with him some literature that confirmed his suspicion that prostate health and cardiovascular disease could indeed interact, and that some medications may have a negative effect on certain PC therapies. I helped direct BR to a physician who specialized in the understanding of PC and cardiovascular disease, and had extensive knowledge in pharmaceutical interactions. BR became more knowledgeable and empowered in his own overall health care, and today has a sincere desire to help others in similar situations.
Since September is National Prostate Cancer Awareness Month, let me direct my concluding remarks to anyone who might be avoiding a needed prostate screening. From my family to yours, don’t be afraid to give up your dignity for the sake of a medical test that might save your life. Your dignity will return to you three-fold in the form of knowledge, understanding, and the realization that you did something meaningful for the people who love you.
Empowerment is your inherent right and privilege. PCRI is here to help.