Online resource for men diagnosed with low-grade prostate cancer launched

Johns Hopkins Medicine, along with the Prostate Cancer Foundation and Cedars-Sinai Medical Center, have launched the National Proactive Surveillance Network, an online resource for men diagnosed with low-grade prostate cancer that can be slow-growing and non-life-threatening in up to 50 percent of diagnosed cases. The network is structured to actively manage prostate cancer in patients who qualify for proactive surveillance, which entails careful monitoring rather than invasive treatment. It will also provide a national resource for prostate cancer experts to advance their knowledge with the goal of providing better care.

Funded by a $5 million program grant from the Prostate Cancer Foundation, the program will use protocols developed by urologists at Johns Hopkins Medicine, which has the nation’s largest patient population under active surveillance for prostate cancer with more than 1,000 men enrolled since 1995. The network includes myConnect, an interactive patient portal designed to track the progress of a patient’s treatment with interactive charts and graphs, connect patients with network physicians, schedule appointments and personalize news content to receive proactive surveillance alerts. The service is HIPAA-compliant for patient privacy and security. 

“We closely monitor patients who are in proactive surveillance,” says H. Ballentine Carter, M.D., director of Adult Urology at Johns Hopkins Medicine and a longtime Prostate Cancer Foundation-funded investigator. “It is not a typical treatment method — it involves ongoing monitoring and management instead of surgery, radiation or other interventions. Proactive surveillance is similar in nature to options known as watchful waiting, expectant management or active surveillance, and emphasizes a patient’s personal preferences. The network will be a resource to men diagnosed with low-grade disease that is often non-life-threatening.”

The National Proactive Surveillance Network comes at a pivotal time for the prostate cancer community. “Recent debate over PSA testing has stirred controversy and confusion over screening men for prostate cancer,” adds Carter.

“Every man has the right to know if he has cancer and to make informed decisions with his urologist. This requires thorough dialogue between patients, family members and urologists — weighing the pros and cons of screening and treatment options. Sometimes the best treatment is deciding that treatment is not needed, perhaps now, or ever,” Carter says.

Patients who join the National Proactive Surveillance Network will undergo biannual digital rectum exams, urine tests and PSA tests, as well as a yearly prostate biopsy. Patients will also answer lifestyle and nutrition questionnaires and record their medical history. In addition to providing an efficient model for proactive surveillance, the network will collect and sort data in a scientific-blinded fashion — with absolutely no patient name association — so researchers can analyze trends and the success of the program. Patient samples, including blood and urine, will also be analyzed and banked with patient consent by Johns Hopkins Medicine on the East Coast and Cedars-Sinai Medical Center in the West. The repository of blood and urine will support future biomarker and genetic studies.

“The network will reduce overtreatment of patients with low-grade disease, ultimately enabling health care services to direct more resources to those patients with aggressive, life-threatening varieties of prostate cancer,” said Stuart Holden, M.D., director of the Louis Warschaw Prostate Cancer Center at Cedars-Sinai Medical Center and medical director for the Prostate Cancer Foundation. “This online tool will also generate a nationwide program for medical professionals to provide better tracking and better stratification of patients whose prostate cancer has a higher probability of being slow-growing and non-life-threatening.”

For information about the Prostate Cancer Foundation, go to www.pcf.org

The Johns Hopkins Brady Urological Institute: http://urology.jhu.edu/