Curing Prostate Cancer - Without Side Effects
Surgery Preserves Potency,
But HMOs Put Up Barriers;
Finding the Right Doctor


By Amy Dockser Marcus

WHEN GLEN PUTMAN was diagnosed with prostate cancer earlier this year, three urologists at Kaiser Permanente, the HMO to which he belongs, recommended he undergo a radical prostatectomy to remove the diseased gland. Mr. Putman. a 62-year-old Los Altos. Calif.. resident. agreed. but was distressed to learn from a Kaiser handbook that over 90% of patients are left permanently impotent after the surgery.

So he spent $2,000 to consult with some of the top prostate surgeons in the country. They told him about a "nerve-sparing" version of the operation a delicate and tricky procedure in which the surgeon cuts out the prostate and removes the cancer without damaging the muscles that control continence or the nerves that are necessary for erection. And they presented very different statistics than the Kaiser handbook: The most experienced surgeons in the nerve-sparing technique report anywhere from 69%-86% potency (meaning about 14% to 31% are rendered impotent). Success rates on another common side effect. incontinence, were even better: Upward of 95% of patients were continent after the surgery.

Neither the Kaiser urologists Mr. Putman spoke with nor the handbook mentioned the nerve-sparing option. But in the two decades since It was first performed. demand for it has soared. About half of all radical prostatectomies are now nerve-sparing, surgeons estimate. Still, many men in managed care are having trouble getting information about the surgery and access to it, particularly to surgeons with extensive experience in the technique.

As with any surgical procedure-whether a Caesarean section or heart bypass-the odds of success are far greater when the surgeon has performed the operation extensively. This is especially true when it comes to nerve-sparing prostatectomies. But today, there are still fewer than a dozen places around the country where surgeons do the nerve-sparing radical prostatectomy full-time. (For a list of some of these surgeons and their success rates, click here.)

"This is a difficult operation, one of the most difficult in medicine," says Patrick Walsh, the chief of urology at Johns Hopkins Hospital, who pioneered the procedure. "You measure success or failure in millimeters. "

When Mr. Putman tried to locate a Kaiser urologist who had performed more than 100 nerve-sparing radical prostatectomies a year-considered by many top surgeons to be a minimum standard for assuring the best results-he couldn't find one. Adding to his frustrations, none of the Kaiser urologists he consulted kept data on whether or not their patients remained potent and continent after surgery.

Curtis Strate, 67, had a similar experience with CIGNA HealthCare of Southern California. Diagnosed with prostate cancer in 1998, he says his CIGNA urologist recommended a radical prostatectomy but didn't mention the nerve-sparing option and didn't provide outcome data on the operations he had performed.

So Mr. Strate paid $18,000 out-of-pocket to have nerve-sparing surgery done at UCLA after finding out about the procedure on the Internet. CIGNA refused to reimburse him, saying similar services could have been provided in network. "The Committee does not mean to criticize you for choosing to obtain the nerve sparing method of a radical prostatectomy from Dr. Smith because you felt that he had more experience in this type of surgery," CIGNA's grievance committee wrote to Mr. Strate. But CIGNA was not bound to pay for that choice under the policy, the committee said. Today, Mr. Strate, a retired accountant who lives in Dana Point, Calif., says he is cancer-free, continent and potent. "This was too important to take a chance on," he says.

In Mr. Putman's case, his regular physician and urologist refused to give him a referral to one of the out-of-plan surgeons he wanted, saying that Kaiser urologists know how to perform nerve-sparing radical prostatectomies. Kaiser's grievance committee turned down his appeals for similar reasons.

"There is no legal or contractual requirement that the Health Plan send their members to an academic medical center or to an out-of-plan physician who has performed more procedures than a qualified physician," Kaiser wrote to Mr. Putman.


Delicate Surgery
Below are the names and contact information for some of the highest-volume surgeons in nerve-sparing radical prostatectomies.
SURGEON/INSTITUTION/LOCATION CONTACT OUTCOME
James Brooks
Stanford University
Stanford, Calif.
650-725-5544, or
www-med.stanford.edu
/school/Urology
Of 700 patients, 95% continence; 69% potency including all ages.
Peter Carroll
University of California
San Francisco
itsa.ucsf.edu/~uroweb/urol 1000 patients, 98% continence; potency ranges from 50-80% with men who are under 65
William J. Catalona
Washington University School
of Medicine, St. Louis
www.drcatalona.com Of over 3200 patients, 92% continence; 78% potency including all ages.
John Libertino
Lahey Clinic Medical Center
Burlington, Mass.
www.lahey.org Of 1500 patients, 99.5% continence; 70% potency (not broken down by age) and without any additional therapy such as Viagra; potency is 50% for men with one nerve spared.
Peter Scardino
Memorial Sloan-Kettering
Cancer Center, New York
800-525-2225, or www.mskcc.org/mskcc/html/403.cfm Of 2000 patients, 95% continence 76% potency for men under the age of 60.
Patrick Walsh
Johns Hopkins Hospital
Baltimore
www.prostate.urol.jhu.edu Of over 3000 patients, 95% continence; 75% potency for men in their 60s; 90% potency for men in their 40s and 50s.
NOTE: Potency figures are for cases where the surgeon saved both neurovascular bundles unless stated otherwise
Source: The surgeons

People contract with HMOs knowing that they are more restrictive than other forms of insurance. But whether an HMO meets its contractual obligations if its network doctors can't come close to matching the results of other surgeons is a tough question to answer. In California, the Department of Managed Healthcare was set up to provide independent medical reviews of HMO denials of service, but it has not typically taken cases when patients want to go out of network for a doctor they consider more qualified because they're so difficult to evaluate.

With prostate cancer, everything from how to diagnose it to how to treat it is mired in controversy. There is not always broad consensus on what course of action is best: surgery, external beam radiation therapy, radioactive seed implantation, or "watchful waiting."

In the case of radical prostatectomies, most surgeons don't collect out-come information because it is costly, requiring follow-up interviews and questionnaires at regular intervals after surgery. Also, there is no commonly accepted, objective way of determining whether someone is potent. Knowing that many men aren't candid when discussing their erections, surgeons will often send out questionnaires to patients' wives as well.

Still, there is no consensus on how to define potency. Some doctors consider men potent even though they need drugs like Viagra; others don't. "This is not as clear cut as measuring the mortality rate after heart,surgery,": says Peter T. Scardino, chairman of urology at Memorial Sloan-Kettering in New York.

Matthew Schiffgens, Kaiser's spokesman, says Kaiser keeps outcome data on many diseases, especially chronic, conditions such as diabetes, asthma and heart disease, but that it is impossible to do this for every condition. "We have to make tough decisions on where to invest in terms of information gathering," says Mr. Schiffgens, "and there is: not even good agreement in the medical community regarding data and claims made on radical prostatectomy."

The 70 Kaiser urologists in Northern California, where Mr. Putman lives, performed 600 radical prostatectomies last year, Mr. Schiffgens says, although Kaiser does not separate out which ones were nerve-sparing.

Peter Carroll, chairman of urology at the University of California, San Francisco, says one reason centers like his own have better outcomes on potency is not only because the surgeons are more experienced but because sexually active men are especially motivated to seek the best nerve-sparing surgeon and tend to be in better preoperative condition. This makes it more difficult to compare the results of doctors working in HMOs with those in academic centers.

Mr. Putman, a freelance writer, says he and his wife, a public school teacher, aren't wealthy. But after speaking with so many doctors, he realized, "I don't want to be on someone's learning curve for something this crucial." He cashed in the life-insurance policies that he took out on himself and his wife.

His nerve-sparing radical prostatectomy is scheduled for later this month. James Brooks at Stanford University, who has done over 700 of these procedures and trained at Johns Hopkins, will be performing it. The cost, every penny of which Mr. Putman must pay himself, is estimated to reach at least $34,000.