d.d. 19 juni 2002:

In Amerika wordt al vele jaren een vorm van opereren bij prostaatkanker met behoud van de zenuwbanen toegepast, waarbij volgens onderstaand persbericht veel meer mensen hun continentie en sexuele potentie behouden. Het probleem is dat deze operatie in Amerika niet alle mannen met prostaatkanker wordt aangeboden. Sterker deze wordt vaak verzwegen omdat er niet genoeg chirurgen zouden zijn die deze operatie uit kunnen voeren. Zoals bekend verliezen veel mannen met prostaatkanker hun sexuele potentie als ze geopereerd worden aan hun prostaatkanker (percentages van 90% permanente impotentie worden hierbij genoemd in het Kaiser handboek, een soort van handboek voor prostaatkankerbehandelingen), waarbij veel mannen ook daarna problemen krijgen met incontinentie enz. Met deze nieuwe vorm van opereren worden de beide zenuwbanen gespaard waardoor deze problemen zich veel en veel minder voordoen. Zie resultaatcijfers verderop in dit artikel, maar cijfers van behoud van continentie lopen van 90 tot 98% en behoud van sexuele potentie van 50 tot 85%. Echt spectaculair dus.

Ik heb het Dijkzigt ziekenhuis - verbonden daaraan is ook de Daniël den Hoed - in Rotterdam gebeld voor een reactie op dit bericht (Dijkzigt/Daniël den Hoed is gespecialiseerd in behandeling van patiënten met prostaatkanker) en uroloog Dr. Kirkels vertelde mij het volgende:
"M.i. zijn de cijfers die ziekenhuizen als Memorial Sloan en John Hopkins naar buiten brengen toch wat gekleurd. Deze ziekenhuizen staan bekend als leidinggevend in Amerika en willen graag veel patiënten en goede resultaten. Daarom worden in dit soort ziekenhuizen patiënten streng geselecteerd waarbij moeilijke gevallen uitgeselecteerd worden en niet mee doen aan dit soort onderzoeken. De cijfers van de praktijk bij alle kankerpatiënten valt dan vaak toch tegen", aldus Dr. Kirkels. Op mijn vraag of deze vorm van opereren ook in Nederland wordt toegepast antwoordde Dr. Kirkels als volgt: "jazeker, als wij op basis van diagnostiek vaststellen dat een zenuwbesparende operatie mogelijk is dan wordt deze ook zo uitgevoerd." Op mijn vraag of deze optie aan alle patiënten met prostaatkanker wordt verteld was dr. Kirkels toch wat vaag vind ik. Hij herhaalde dat dat afhing van de diagnostiek. Ik kreeg wel het gevoel dat net als in Amerika patiënten niet altijd goed worden voorgelicht over deze optie, maar mag dat niet doen op basis van dit telefoongesprek. Ik ben eerlijk gezegd wel benieuwd naar reacties van mannen die al of niet deze vorm van opereren is aangeboden en ook uitgevoerd. Misschien wilt u uw reactie aan ons mailen?

Conclusie is m.i. wel dat wanneer u geconfronteerd wordt met de diagnose prostaatkanker het heel zinnig kan zijn om naar deze mogelijkheid te vragen bij uw oncoloog/chirurg. Het algemene telefoonnummer van het Dijkzigtziekenhuis is: 010-4391911 Op pagina nuttige adressen staat nog een ander telefoonnummer van het spreekuur second opinion dat enkele keren per week in de Daniël den Hoed wordt gehouden. Wanneer u patiënt bent in een ander ziekenhuis zou een second opinion daar m.i. zinvol zijn. 

Om een paar cijfers te noemen uit de verschillende ziekenhuizen in Amerika (adressen en telefoonnummers staan onderaan in Engelstalige bericht) die deze nieuwe vorm van opereren toepassen:

James Brooks/Stanford University/Stanford, Calif.
Van de 700 behandelde patiënten behield 95% zijn continentie en 69% zijn sexuele potentie voor mannen met alle leeftijden.


Peter Carroll/University of California/San Francisco
Van de 1000 patiënten, 98% continent; potentie behoud in percentages van 50-80% bij mannen onder de 65 jaar.

William J. Catalona/Washington University School of Medicine/St. Louis

Bij meer dan 3200 patiënten, 92% continent; 78% potentie behouden bij mannen van elke leeftijd 

John Libertino/Lahey Clinic Medical Center/Burlington, Mass.

Bij meer dan 1500 patiënten, 99.5% continent; 70% potentie behouden voor mannen van elke leeftijd en niet kunstmatig opgevoerd dor bv. viagra. 50% potentiebehoud bij mannen die slechts 1 zenuw was gespaard. 

Peter Scardino/Memorial Sloan-Kettering Cancer Center/New York

Van de 2000 patiënten, 95% continent; 76% potentiebehoud bij mannen onder de 60 jaar.

Patrick Walsh/Johns Hopkins Hospital/Baltimore

Van meer dan 3000 patiënten, 95% continent; 75% potentie behoud voor mannen in of over de zestig. 90% potentie voor mannen van 40/50 jaar.
De cijfers zijn gebaseerd op die gevallen waar de chirurg beide zenuwbanen spaarde tenzij anders vermeld.

Hieronder het officiële persbericht dat ik uit Amerika kreeg toegestuurd.

Curing Prostate Cancer Without Side Effects --
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.
"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.
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 outcome
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 pre-operative 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.
---
Delicate Surgery

Below are the names and contact information for some of the highest-volume
surgeons in nerve-sparing radical prostatectomies.

SURGEON/INSTITUTION/LOCATION: James Brooks/Stanford University/Stanford,
Calif.
CONTACT: 650-725-5544, or www-med.stanford.edu/school /Urology
OUTCOME: Of 700 patients, 95% continence; 69% potency including all ages.

SURGEON/INSTITUTION/LOCATION: Peter Carroll/University of California/San
Francisco
CONTACT: itsa.ucsf.edu/uroweb/urol
OUTCOME: 1000 patients, 98% continence; potency ranges from 50-80% with men
who are under 65.

SURGEON/INSTITUTION/LOCATION: William J. Catalona/Washington University School
of Medicine/St. Louis
CONTACT: www.drcatalona.com
OUTCOME: Of over 3200 patients, 92% continence; 78% potency including all
ages.

SURGEON/INSTITUTION/LOCATION: John Libertino/Lahey Clinic Medical
Center/Burlington, Mass.
CONTACT: www.lahey.org
OUTCOME: 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.

SURGEON/INSTITUTION/LOCATION: Peter Scardino/Memorial Sloan-Kettering Cancer Center/New York
CONTACT: 800-525-2225, or www.mskcc.org/mskcc/html/403.cfm
OUTCOME: Of 2000 patients, 95% continence; 76% potency for men under the age
of 60.

SURGEON/INSTITUTION/LOCATION: Patrick Walsh/Johns Hopkins Hospital/Baltimore
CONTACT: www.prostate.urol.jhu.edu
OUTCOME: 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