Online prostate cancer database launched to help patients decide whether to risk aggressive treatment

Men diagnosed with slow-growing, non-life threatening prostate cancer can now track the progression of their disease online.

It’s billed as the world's first online medical database for men with prostate cancer. The idea behind the interactive portal is to allow patients to track progression of the disease before they seek aggressive treatments.

Doctors at Cedars-Sinai and Johns Hopkins have partnered with the Cedars-Sinai's Samuel Oschin Comprehensive Cancer Institute and the Prostate Cancer Foundation as sponsors of the online database they’re calling the National Proactive Surveillance Network.

The network is based upon studies that suggest up to 50 percent of all newly-diagnosed prostate cancer cases are so slow-growing that they pose little-to-no threat to a man’s long-term health.

As a result, more doctors are recommending such patients opt for “proactive surveillance,” or “watchful waiting,” before immediately undergoing conventional surgery and radiation — which can leave them incontinent or impotent, diminishing quality of life while not increasing the patient's lifespan.

Stuart Holden, M.D., director of Cedars-Sinai’s Louis Warschaw Prostate Cancer Center, said the interactive database gives patients a new option.

“They can go online and they will access all their information into this database. It includes lifestyle questionnaires. It includes nutritional databases, which are unique, and ‘cause we know that nutrition does have some bearing on this,” he said. “It allows them to continuously interact through the Web portal both to make sure they make all their follow-up appointments, they can access data as it accumulates from the study.”

Patients who join the online network will receive annual prostate biopsies and provide blood, tissue and urine samples that will be sorted blindly — without identifying patients by name — and then used by scientists for future prostate cancer studies. The samples will be banked at Johns Hopkins on the East Coast and Cedars-Sinai in the west.

“There’s been a lot of controversy about screening for prostate cancer, diagnosing prostate cancer, [Prostate-Specific Antigen] PSA prostate cancer and the like," said Holden.

Holden said he hopes the database will help physicians better predict which men might benefit from treatment and which men could safely delay it.

Doctors diagnose about 220,000 men in the U.S. with prostate cancer each year. Nearly 30,000 a year die from it.

This story has been updated.