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.

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Mar
17

The Language of Cancer

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I just saw that Dana Jennings, who writes a blog about his prostate cancer for the NYT, is discussing language and cancer.  So I recycled this essay I wrote some time back.

It amazes me that doctors still use the word biochemical failure to refer to a recurrence of prostate cancer.  A doctor told me, “It’s a shame this word escaped from the lab”.  I know that when we got hubby’s  post-surgery positive PSA  I was depressed because the word “failure” kept on going round and round in my mind. We got an “F” in prostate cancer.

“Recurrence” on the other hand, is almost good word. It sounds like an old friend has come back to stay with you.  (OK, it’s a stretch.) 

And may I ask, what do they call death if recurrence is “biochemical failure”?   “Biochemical catastrophe,” maybe? “Biological Armaggedon”?

My husband’s surgery failed, and so he had to have “salvage radiation“.  This term is a favorite.  Sounds like they gave him rad in the junkyard?

Seriously, the language of cancer is something we need to talk about

Language affects the way we cope with disease.   A writer named Susan  Sontag, who struggled with cancer for years, wrote a book called “Illness as a metaphor“  which describes how cancer has been demonized, in part because of the language associated with it.

Wouldn’t you feel better if you had a neoplasm”?  That’s the scientific word for “new growth”, which is what you have.  I can just see the buds, little sprouts.  And we don’t need to worry about dumping ”cancer” because it has no scientific meaning.  Cancer means “crab”, because some Greek thought it resembled one.

Other diseases have undergone verbal makeovers.  “Leprosy” is now “Hansen’s Disease“.  And “senility” has become “Alzheimer’s.”  I think these changes have helped, but they’re are a mouthful.   

 ”Malignant” gets to me the most.  Something evil resides in my body.  Call the exorcist.

We know that there are plenty of diseases out that are much worse than cancer .  Just ask my brother-in-law who is dying of ALS (Lou Gherig’s disease).  Ebola virus, anybody?  Never mind, “cancer” still terrorizes The word is radioactive.  Period.

That’s because all sorts of terrible things have come to be associated with cancer. But this is something we can change.  For example, in general parlance we refer to something evil or noxious as a “cancer” that needs to be excised. Can anybody think of a better word?

The words we use to describe cancer make us feel bad about ourselves .   We take cancer very personally. This doesn’t happen with other diseases, except maybe AIDS.

There are a lot of people with prostate cancer who think of their illness as a “beast” to be slain.   But his metaphor doesn’t work for everybody.

My father had a stroke, and nobody called it a “beast” or developed any personal relationship with it. It was just something unfortunate that happened which had to be overcome. It wasn’t malignant.I don’t think heart disease is taken personally either.  Good examples for comparison with cancer are arthritis and lupus.   These diseases result from your own immune system attacking you. The job of the immune system is to protect you!  But you don’t hear people saying, “That double-crossing Arthritis Beast!”

I hope what I’m saying will make you have more compassion for yourself and find some relief.  It’s hard to exist in a perpetual state of war.  What really struck me about the language of cancer was reading a long article about how tumors use every trick of evolution to outwit us, “Cancer as an Evolutionary and Ecological Process“, (Lauren, et al., avail. on Medscape). But it also described cancer as a “neoplasm”, not a “beast”, and I saw the cancer for what it is: a pathetic bunch of damaged cells that are just trying to do what we all want to do, our biological imperative, which is to survive.  Unfortunately, the only thing around for the cancer eat is us.

The article described the relationship between the “host” and the cancer alternatively as “parasitic” and “mutual association”.  I’ll take ”mutual association”.

But we have the last laugh: If the cancer kills us, it kills itself, too. And leaves no fond memories.  Compare our lives with the lives of cancer cells which are just mindlessly reproducing, (asexually) while we are having fun.

I must tell you, and I know a lot of people won’t like it, that after reading the article I referenced, I could no longer view cancer as a “Beast”. It seems ridiculous to be waging war with a bunch of cells.   In reality, the cancer is not evil, it’s neutral, and it has no control at all over its life.

For example, in the ordinary course of things, a normal cell may turn itself into either a stem cell or a sperm cell.  But it’s not a choice between good and evil, it’s molecular biology. If you want to blame somebody for your cancer, try your ancestors.  Or carcinogens in the environment.  Or the government for tolerating  pollution.  Or vent  at the medical professionals.  But this mindless bunch of damaged cells who are just following the rules of evolutionary biology —  it’s hard to even consider them evil.

Anyway, my attitude has changed. I no longer regard cancer as the enemy. And that makes me feel a a lot better.  It’s more like fate has brought the two of us together for better or for worse. And, although, we have made progress in getting rid of our unwanted “guests” we still have a long way to goat it.

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A story about prostate cancer (PC) screening titled “The Great Prostate Mistake” which appeared in the New York Times last week, ”went viral”.  Everybody’s talking about it.  (See http://www.nytimes.com/2010/03/10/opinion/10Ablin.html?scp=1&sq=ablin&st=cse)   I refer to an opinion piece written by Dr. Richard Ablin, a researcher in immunobiology and pathology who invented the prostate-specific antigen (PSA) test in 1970, the most commonly used tool for detecting prostate cancer (PC) today .  The test measures the levels of  PSA, a protein secreted by cells in the prostate which leaks into the blood, excessively if there is prostate cancer.

Dr. Ablin is clearly unhappy that he released this particular genie from the bottle. He decries the widespread, indiscriminate use of  the PSA test, by which he means the practice of testing all men over a certain age regardless of risk.   (The recommended age used to be 50, but it  was recently lowered  to 40 by the American Urological Association).    Dr. Ablin believes mass PSA testing has become a ”costly, profit-driven public health disaster”, spurred by greedy drug companies who “peddle” the test and overzealous patient-advocates who sponsor screening events as part of “prostate cancer awareness”.

Dr. Ablin claims the PSA test is hardly better at detecting PC than a coin toss.   The test generates a lot of false positives because many common factors other than cancer can cause PSA levels to be elevated.  And the PSA test misses 30% of cancers.  But by far the biggest problem with the PSA test is that it can’t distinguish between the majority of  PCs which are slow-growing and harmless and may not need treatment, and the fast-growing PCs, which require aggressive treatment.

In spite of these limitations, moans Dr. Ablin, doctors have widely embraced the PSA test and used it as a rationale for performing a whole lot of painful biopsies and invasive treatments, most commonly surgery to remove the prostate, radiotherapy and androgen deprivation therapy. These interventions have left hundreds of thousands of men with profound, quality-of-life-diminishing side effects such as impotence and incontinence, for questionable benefit.

Dr. Ablin argues that widespread, routine PSA testing is not worthwhile because PC claims so few lives anyway – only 3% of men who get the disease actually die of it. And any benefit derived from the PSA test is far outweighed by the harm it causes.  Dr. Ablin cites a European study which found that to prevent one man from dying of PC,  47 others would have to be treated  (surgery is the most popular choice).  Somebody likened this to a lottery. One person wins big, very big ,but the other 47 are losers.

I think Dr. Ablin overstates his case.  The PSA test is not quite as useless as he makes it out to be.  Dr. Ablin acknowledges as much at the conclusion of his article when he urges that men with a family history of PC continue to be tested.  But I do agree with the spirit of Dr. Ablin’s argument, that although PSA testing has benefited a lucky few (probably including my own husband), it has been a source of great anguish for many others .

So is it time to dump the PSA test?  Not so fast.

To be continued.

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Mar
14

More on The PSA “Mistake”

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I am reposting this from the blog, “All Things Prostate”, written by Dr. Michael Glode, a genito-urinary oncologist at the University of Colorodo Medical Center .  http://www.revolutionhealth.com/blogs/michaelglodemd.  It is a commentary about an article called, “The Great Prostate Mistake”, which appeared in the New York Times a few days ago.  The author of this article is Richard Ablin, an immunologist and pathologist who invented the PSA test back in 1970.  I need to say that I don’t agree with everything Dr. Glode says, but I know him to be an intelligent and thoughtful person.  I will have plenty to say about this subject myself.  Stay tuned.

OK, OK … Both my sister and daughter have wanted to know what I think about the most frequently mailed post in the current New York Times. (please read it before reading on if you haven’t seen it) The author laments his discovery of PSA, an enzyme made by the prostate that leaks into the blood stream, but leaks even more if you have cancer. . .

PSA testing took off like a rocket. As Otis Brawley [head of the American Cancer Society] put it last weekend at the ASCO GU [American Society of Clinical Oncologists -- genitouritary] Symposium, it was a case of “faith based practice versus evidence based practice”.  The evidence took a long time to develop, but it is now here. I have blogged elsewhere in this forum about the two large screening studies published last year in the New England Journal of Medicine that raise serious concerns about what we have done. But this was not the first time experts in the field have raised questions. For example, a wonderful editorial in the Lancet in 2002 was entitled “Eradication of a disease: how we cured symptomless prostate cancer”

My own view is that we are finally waking up and that PSA testing is just one of many things that society (particularly U.S. society) needs to be looking at in controlling health care costs. The billions of dollars spent on earlier testing, earlier and more expensive (but not necessarily better) treatments for prostate cancer, and treatments with limited effectiveness for the unfortunate patients late in their disease course should be looked at with some harsh reality testing. We can’t afford to ruin this wonderful country of ours by spending everything we have on health care while we ignore the educational needs of our kids, innovations needed in energy, and fixing potholes in our roads.

I personally like the idea of panels that look at cost-effectiveness and decide where to draw the line on what our insurance (Medicare, Medicaid, private…non profit I would propose, and so on should pay for). Yes folks, this is RATIONING. We already do it in a haphazard manner by not insuring the sick. PSA testing may be something we shouldn’t pay for.  Those with proper information who wish to be tested should be allowed to do so, but…

My bottom line is that I think PSA testing has saved some lives. But it has been at the huge financial, emotional, and physical (incontinence, impotence, etc.) expense to dozens of men for every life saved. Churchill said, “Never in the field of human conflict was so much owed by so many to so few.”  In this case it is the few who owe a debt to the many I would guess.

He also said, “If we open a quarrel between past and present, we shall find that we have lost the future.” It is time to become realistic about the limits of medicine and make some hard choices about our future.”

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