I have been silent lately and can’t write much now because my hand is strained from too much typing.  My thumb feels like it’s going to disengage from my forefinger any minute.  But I’ve decided to try my best to pass on to you valuable information that comes my way, like this piece from the New Prostate Cancer Infolink news blog.  My opinion is that the PCF initiative will be a real game changer in PC treatment — for the better.

URL is: http://prostatecancerinfolink.net/2010/05/27/9191/

Leah

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“A national, proactive prostate cancer surveillance initiative”

// The Prostate Cancer Foundation (PCF) has announced plans for a National Proactive Surveillance Network (NPSN) designed to reduce overtreatment of prostate cancer patients to better direct resources to those patients with more aggressive, life-threatening varieties of this disease.

According to a media release this morning, the NPSN will provide “a nationwide program for medical professionals to provide better tracking and prediction of disease progression in patients whose prostate cancer has a higher probability of being slow-growing and non-life threatening.”

This initiative is a cooperative effort of PSF in conjunction with Johns Hopkins Medical Center in Baltimore and Cedars-Sinai Medical Center in Los Angeles. The program will employ the proactive surveillance protocol originally developed by physicians at Johns Hopkins University Medical Center and a secure online site that patients and their physicians can privately access to enter, review and track their data on a regular basis.

The online interface will be available for use later this year and will be available to any physician/patient team that wishes to access the network. It will be built to be fully HIPAA compliant to ensure patient privacy. Stuart Holden, MD, director for the Louis Warschaw Prostate Cancer Center at Cedars-Sinai Medical Center, and Ballantine Carter, MD, director of adult urology services at Johns Hopkins, will serve as co-principal investigators for the program.

“We are excited to announce the formation of the National Proactive Surveillance Network,” explained Jonathan W. Simons, MD, president and CEO of PCF. “Until we have a better biomarker at our disposal for distinguishing between slow-growing and aggressive, life-threatening varieties of prostate cancer, this program will help us prevent overtreatment of patients, giving them more confidence in the screening tools we have today and their treatment decisions.”

The Johns Hopkins active surveillance protocol is based on the premise that older patients with a low PSA level relative to prostate volume and who have evidence of small-volume, low-grade cancer (Gleason score 7) or more extensive disease, patients are then advised to undergo treatment with curative intent (with either radiation or surgery). About 800 patients with an average age of 67 years have been enrolled in the program since it was initiated at John Hopkins. According to Dr. Carter, “Fifty-six percent have remained active, 32 percent have undergone curative intervention and two percent have died of causes other than prostate cancer. Ten percent have either been lost to follow-up or have withdrawn from the program.”

PCF further states that “In addition to providing an efficient model for proactive surveillance, the NPSN will collect and sort data blindly — with absolutely no patient name association — so researchers can analyze trends and the success of the program.” Patient samples, including blood and urine, will be analyzed and banked by Johns Hopkins University Medical Center and by Cedars-Sinai Medical Center on the east and the west coasts, respectively. This blood and urine specimen repository will support future research on potential new biomarkers and on the genetics of prostate cancer.

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This is a follow-up to a post I wrote called, “PSA Testing: The Good, the Bad and the Ugly”.   http://prostatecancerblog.net/wp-admin/post.php?action=edit&post=2120.  Please read that before you read this.

Dr. Richard Ablin, father of the PSA test, argued in a New York Times op-ed piece recently that the widespread, routine use of the test to screen for prostate cancer (PC, my abbr.)  has been nothing short of a “costly, profit-driven public health disaster”. 

While I agree with much of what Dr. Ablin says, I think he overstates his case.  Take for example the argument that widespread, routine PSA screening is not worthwhile because only 3% of men with prostate cancer (PC) actually die of the disease. I find this point of view myopic .  It ignores the suffering and disability endured by the many men who live with prostate cancer for years and may endure harsh treatments, even though they may be “lucky enough” to eventually die with PC, not of it.  (Keep in mind that there are about four million men in this country who have been diagnosed with PC. ) And let’s not forget the 30,000 men who do die of PC each year.

So I say it’s not just quantity but quality.

And the PSA test is not quite as useless as Dr. Ablin makes it out to be.  If that were so, then why would the doc recommend that high-risk patients be tested?  The value of the PSA test is much greater when combined with other patient risk factors such as age, Gleason score, stage, PSA density, etc.  And the new PCA3 test, which is more “specific” for PC (no false positives), can also give the PSA test a boost when the two are combined.  (The test is not yet FDA-approved but used by some clinicians.)   

Also, PSA levels in the lower range may not mean much, but if you have a PSA over 10, as my husband did, you may have an aggressive PC and at least you get a chance to treat it.  I don’t want to go back to the day when a diagnosis of PC was a death sentence.

Misuse of the PSA Test

On the other side are the legions of men (many in their 40s and 50s) who leak or who have to run to the bathroom all the time or who haven’t had sex in 10 years because they were aggressively treated for a disease that would not have harmed them.  And the women are the collateral damage.  I’ve lost track of how many alienated wives I’ve spoken to who’ve been pushed away by depressed husbands.  (I think women suffer more from the effects of PC than men, and studies have borne this out. That’s why I have a post on this blog called, “Resources for Desperate Women.”)

For years now we have been discussing the problem of the overdiagnosis and overtreatment of PC.  Doctors have been advised to exercise restraint in prescribing invasive treatments, but this just hasn’t happened.  For example, the number of robotic prostatectomies performed has jumped if not skyrocketed in recent years. 

Anecdotal evidence is not the best, but what I’m going to share with you is supported by research.   I have been following the conversation of a large  group of newly diagnosed men with PC in  a popular online forum.  What I see is guys who have what the National Comprehensive Cancer Center (nccn.org, a consortium of the top cancer hospitals in the country) calls “very low-grade cancer,” which they recommend be managed by watchful waiting.  Instead these people are herded into surgery.   I have seen men operated on who did not even have cancer in the first place (although they may have had pre-cancerous cells).

And the American Urological Association just made things worse by lowering the recommended age for a first PSA test from 50 to 40.  While there’s a rationale for this, I’m afraid a lot of young men with “insignificant” PC’s are going to caught in this trap. 

I believe we should abolish mass, population-based PC screening.  A man should not be given vital information about his health at a baseball game or county fair.  The PSA test should be done in a doctor’s office, with proper guidance.  And I will tell you from experience that the best thing you can do for your health is to develop a relationship with a good primary doctor whom you trust.

The PSA Test and Vested Interests

The PSA test is not a bad thing in itself:  You can compare it to a medicinal herb: when taken properly it can heal, but when used improperly it can poison.  PSA testing has become “toxic” to society because it has been so widely misused by doctors, drug companies, device makers and others with vested interests.  Did you know that ”Prostate Cancer Awareness Week,” which is usually accompanied by mass screening events, was thought up by a drug company?  Or that the tennis star John McEnroe, who many of us saw on the Larry King show urging men to be tested for PC at age 40 (supposedly on behalf of a charity), is a paid spokeman for Glaxo-Smithkline?

I had to scratch my head a bit to figure out what Glaxo has to gain by pushing mass PC screening.  But I think I figured it out.  PSA testing brings lots of men to the doctor’s office.  Most of these guys will NOT be diagnosed with PC, but they may well have an enlarged prostate.  So Glaxo stands ready with Avodart, a drug that shrinks the prostate.

Last month I got a press release from a large radiotherapy practice based in Georgia, advising me to tell the world that February was “Love Month.”  And the message was that for Valentine’s Day, instead of bonbons, you should give your amour a PSA test.

So I asked myself, “What’s love got to do with this?”  Seems to me it’s about money.  I personally would not want to have a PSA test done by anybody who has a financial motive to treat me.

And there’s more: academics and policy wonks say that doctors are “incentivized” to perform invasive procedures  because our fee for service healthcare system rewards them for doing things, not spending time with patients.

PC Screening and Treatment in the Real World

Best practices now recommend that, before ordering a PSA test, a doctor give the patient a detailed lecture about the  pros and cons of PC screening.  You don’t have to be a genius to know that this just doesn’t happen in the real world — for one thing there are time constraints.  One doctor wrote, “Give me a weekend with the patient and I’ll explain everything to him”.  Best practices also require doctors to discuss the pros and cons of all available treatments with newly diagnosed patients.  But this is a pipe dream.

A recent study found that doctors are heavily biased toward their own specialties.  So if a newly diagnosed man with even a speck of cancer sees a urologist, he will probably end up having a radical prostatectomy.  And a patient who visits a radiation oncologist will likely end up having radiation.  According to this study, only patients who saw a medical oncologist (3%) or a primary care doctor (22%)  were given conservative treatments such as watchful waiting.

Technology has come to play a major role in PC treatment: doctors and hospitals now spend millions of dollars on high tech equipment like the da Vinci surgical robot, which costs about $1.5 million to purchase and $150,000 a year to maintain.  Setting up a proton beam accelerator costs a staggering $100-200 million and requires a space the size of a football field.  The only way to offset these costs is to keep the machines running, i.e. using them to treat as many patients as possible.

It’s noteworthy that neither robotic surgery nor proton beam therapy has been shown to be superior (in preservation of continence, potency and cancer control) to the old methods, but the government picks up the tab for these procedures anyway through Medicare and Medicaid.

Men who are diagnosed with prostate cancer just do not have the tools with which to make informed decisions about treatment.  This is because there is very little good information available about PC, and much of what is available is biased.  More important, a newly diagnosed man is very unlikely to be able to see the forest for the trees.  A man can have a Ph.D. and do his homework,  but most likely he still won’t realize that in the examining room with him, figuratively speaking, there may be not just his doctor but a government accountant, a drug company rep and an insurance company executive.   And these “invisible presences” may well influence the course of his treatment and his life.

A Bright Future

In the mission statement of this blog that I have been writing for almost four years, I stated that it was my wish to play a role in bringing about the more humane treatment of PC patients and their families.  (And I mean the word “treatment” in both senses of the word.)   I wasn’t seeing much progress to be honest with you.  But now I’m feeling hopeful (ecstatic might be a better word), because we are finally discussing, hotly debating issues that are very important to us, the PC community.  And the world is paying attention.  Sometimes I feel like the academics, pundits, researchers and others who comment on PC (often  disparagingly) publicly should just go to hell and mind their own business because they’re not in the trenches like we are.  But in spite of this occasional pique I believe that more discussion will lead to better care for prostate cancer patients, not vice versa. 

What makes me happiest is that we as a society are finally starting to realize that more medicine is not always better medicine. (This is a quote from an article in this week’s New Yorker magazine by Dr. Atul Gawande, a well-known doctor and medical writer.)  We have to realize this, because we’re going to go broke otherwise.

You might say that with prostate cancer, frequently less is more.

The New York Times reported that the Nuclear Regulatory Commission slapped the U.S. Veterans Administration with a hefty fine because of a series of botched radiation treatments for prostate cancer (almost 100 cases) that occurred at the Philadelphia VA hospital from 2002-2008.  http://www.nytimes.com/2010/03/18/health/policy/18radiation.html.   I’ve been following this story since the Times broke it in June.  This is was one of the worst medical screw-ups I’ve ever read about.  So I was waiting for heads to roll, but all I heard about was of one doctor being suspended for three days. [You should read the original NYT article about this here: http://www.nytimes.com/2009/06/21/health/21radiation.html?pagewanted=3&_r=1.]

Here’s what happened.  Back in 2002 the Philly VA hospital wanted to offer its prostate cancer patients the option of treatment with brachytherapy, which involves surgically implanting radioactive seeds in the prostate to kill the cancer.  The  folks at the VA hospital asked the University of Pennsylvania  Hospital to set up a program for them.  (VA Hospital is Penn’s teaching hospital).  Penn did, reportedly assuring the VA that they would hire any experts if they needed them.  Patients in the program were to be treated at Penn but were still under the supervision of the VA.

You’d think the VA could rely on this Ivy League institution to do the job, but no such luck.  Turns out the radiation oncologist who volunteered lead the program, Gary Kao, MD, (Johns Hopkins) PhD (Penn),  had very little experience with brachytherapy.  But they could fix that by sending him for some training.  So they thought.  Anyway, Dr. Kao performed most of the implants for the 116 vets who participated in the program.  He allegedly made a lot of mistakes but went right on treating patients.  For six years, until the VA finally shut down the program.

It turned out that 92 of the group of 116 vets in the brachytherapy program were given the wrong treatment.  Some were underdosed and others were overdosed.   And the radiation didn’t always reach the intended target.  One man, Rev. Ricardo Flippin, a 20-year veteran of the Air Force, was given a very high dose of radiation to his bladder .  He suffered severe burns to his anal canal and still  has bowel problems and severe pain even though he had surgery and other treatments to try to correct the problem. 

Some parts of this story are hard to believe.  For example: the standard practice is that after performing an implant (ot other procedure involving radiation), the radiation oncologist checks that the correct dosage was administered.  But in this case, the doctors didn’t even bother:  

“The team continued implants for a year even though the equipment that measured whether patients received the proper radiation dose was broken”.  

Actually, this involved a computer that was not plugged into the network.  And it stayed that way for a year.  I saw a blog post called, “For Want of an IT Professional, Cancer Treatments Botched”.  But there’s more: The Philadephia Inquirer wrote that, in at least two cases where Dr. Kao administered the wrong dose, he simply went back  and rewrote his surgical plan to reflect the actual (incorrect) dose the patient received.   And things were so bad that the doctors at Penn had to refer a bunch of patients to a VA hospital in Seattle which has an excellent brachytherapy unit, for”remedial” treatment. 

As somebody put it, this case involves malpractice at every level.  The supervisors at Penn didn’t do their job, and you can say the same about the bosses at the VA hospital. And the physicists from the Nuclear Regulatory Commision, who came to inspect the facility, saw there were problems but looked the other way.

There is a lesson here for everybody.  First of all, if you are going to have brachytherapy, choose a doctor who does a lot of these procedures — at least 50 a year.  I used to think choosing a radiation oncologist was a piece of cake, a no-brainer.  All the doc does is press the “On” button on the machine, right?  Wrong.  If you are going to have external beam radiation or brachytherapy, choose the most experienced doctor you can find, preferably one who works at a “center of excellence”. 

One radiation oncologist commenting on this story stressed the importance of having some sort of certification or credentialling system so that patients would know which doctors are trained to do a certain procedure, brachytherapy, for example.  I agree with this, and I think these standards are necessary for ALL doctors who treat PC patients, including surgeons.  Protecting the public is number-one.  

My second observation is that the Nuclear Regulatory Commission’s imposing a fine of $227,000 on the VA, even though it is the second-highest in history, is a slap on the wrist and does not represent justice for the injured vets.    I believe the doctor who peformed most of the erroneous treatments was not even fired by Penn.  I think he resigned and may even still be working the university. 

There are two scandals, here, unfortunately.  One is the medical malpractice.  The second is the lack of accountability.