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I recently wrote about the US Preventive Services Task Force decision to not recommend screening asymptomatic men for prostate cancer.There is heated discussion in the lay press, blogosphere, and scientific world regarding this report. The discussants offer strong statistical evidence on one side showing no improvement in the health of America as a consequence of screening. The opposing argument goes this way:

Tom Denhart was a father, husband, grandfather, friend, artist, advocate and patient.

On April 12 2009, he lost his 14 year battle with prostate cancer.

The following is my family’s story of discovery and loss. As I’ve learned, this experience is not uncommon when it comes to men and prostate cancer. It doesn’t have to be this way.

An underlying problems is one of terminology. The New York Times ran a well written essay recently entitled “Cancer by any other name.” In it the essayists discusses the use of the term cancer in clinical medicine and everyday life.

The idea of cancer as a progressive disease that will kill if the cells are not destroyed dates to the 19th century, said Dr. Otis Brawley, chief scientific and medical officer at the American Cancer Society. A German pathologist, Rudolph Virchow, examined tissue taken at autopsy from people who had died of their cancers, looking at the cells under a light microscope and drawing pictures of what he saw.

Virchow was a spectacular artist, and he ended up being the first to describe a variety of cancers — leukemia, breast cancer, colon cancer, lung cancer.

Of course, his patients were dead. So when he noted that aberrant-looking cells will kill, it made sense. The deranged cells were cancers, and cancers were fatal.

Dr Halstead, the father of the radical mastectomy, further developed the idea that cancer needed to be radically excised to be cured, an attitude that persisted for almost 100 years:

Whereas earlier surgeons would remove the breast, axilla nodes, and pectoralis muscle, that was not enough for Halstead. He knew that cancer was a cellular disease and worried about his own role in spreading it. He argued that lifting away the excised breast with surgeon hands probably scattered tumor cells. This led him to call for a radical mastectomy—removal of the breast, axillary nodes, and both chest muscles in a single en bloc procedure. He would cut widely around the tumor, removing all the tissue in one piece.

This aggressiveness was felt to be important in the cure of cancer by those who taught me.  The essayist in the New York Times points out that such aggressiveness does not benefit patients with low grade tumors of the breast, prostate, and cervix, the kind often found by screening:

…one thing is growing increasingly clear to many researchers: The word “cancer” is out of date, and all too often it can be unnecessarily frightening.

Folks who make policy regarding cervical cancer screening through the use of the PAP smear have quietly moved in a different direction:.

Gynecologic pathologists addressed this issue with regard to cervical carcinoma in-situ in 1988 and developed the “intraepithelial neoplasia” terminology that eliminates the word “carcinoma” from these in-situ lesions.

More recently, a distinguished group of prostate cancer investigators made a similar recommendation:

Because of the very favorable prognosis of low-risk prostate cancer, strong consideration should be given to removing the anxiety-provoking term “cancer” for this condition.

These thoughts are not original. The scientist for whom prostate cancer staging is named suggested several years ago that the lowest state should be called adenosis. Keven Pho of KevinMD suggests that even with a name change, those of us opposed to aggressive approaches to not-so-aggressive tumors need to not only rely on statistics (which prove the correctness of our beliefs). In addition we need to focus on compelling stories that illustrate the consequences of calling something cancer when it isn’t. There are many such stories such as the following from the New York Times:

Brawley (a physician scientist) tells the story of a patient who had surgery and then underwent radiation, which left him with severe damage to both his rectum and ureter. “He had every side effect known to man,” Brawley says. “He had a bag for urine, a bag for stool, he was a terrible mess, in and out of the hospital with infections.” The man died six years after his surgery, from an overwhelming infection. Yet cancer statistics would list such a man as a success story, Brawley says, “because he survived past the five-year mark.”

In fairness, aggressive treatment is very effective for certain cancers. We need to work harder to distinguish patients who will benefit from aggressive treatment from those who will suffer harm without receiving any benefit. Apparently patients with low grade prostate and breast cancers fall into the latter category. How many stories do we really need for the right thing to happen?

Prostate cancer (discussed here) continues to be an in-vogue topic, as evidenced by Dr Newt Gingrich’s astute observations. The prostate, it seems, weighs heavily on the death panels as they deliberate.

As I wrote in another venue:

The USPSTF recommends against prostate-specific antigen (PSA)-based screening for prostate cancer. It does so although prostate cancer is a common cancer that 2.8 percent of men will eventually die from. The reason that screening is not recommended is that the vast majority of men who have an unsuspected cancer detected by screening have a tumor that is so slow-growing that it will not affect the man’s lifespan or result in poor health – most likely he will die of another cause first.

In addition, false-positive tests – tests where the PSA is elevated but no cancer is found – are associated with a persistent worry about prostate cancer and other unfounded health fears. The USPSTF reports that men having a false-positive test are more likely to have additional testing, including biopsies, in the following year than those who have a negative test. Over a 10-year period, as many as 20 percent of men will have an abnormal result that triggers a biopsy, with very few of these men ever being diagnosed with cancer.

The USPSTF found that a number of men biopsied will suffer from fever, infection, bleeding, transient problems urinating, as well as pain. Of the men who are found to have cancer, almost all will have aggressive therapy. The evidence is that these men will not have a longer life as a consequence of their cancer treatment. The treatment is not benign. Almost 1 percent of men will die within 30 days of undergoing radical prostatectomy, and another one in 20 will have serious surgical complications. Those that survive the surgery will have more sexual problems and urination problems than those who elect to not have aggressive therapy even if they have cancer.

Or, put another way:

Imagine you are one of 100 men in a room,” he says. “Seventeen of you will be diagnosed with prostate cancer, and three are destined to die from it. But nobody knows which ones.” Now imagine there is a man wearing a white coat on the other side of the door. In his hand are 17 pills, one of which will save the life of one of the men with prostate cancer. “You’d probably want to invite him into the room to deliver the pill, wouldn’t you?” Newman says.

Statistics for the effects of P.S.A. testing are often represented this way — only in terms of possible benefit. But Newman says that to completely convey the P.S.A. screening story, you have to extend the metaphor. After handing out the pills, the man in the white coat randomly shoots one of the 17 men dead. Then he shoots 10 more in the groin, leaving them impotent or incontinent.

Heck of a death panel, isn’t it?

When I was growing up, my parents had a subscription to Reader’s Digest. If you are unfamiliar with the publication, it is put out monthly and offered (and may still offer) 31 articles which rumor had it were written to be of such length that the average American could read an article in the time he or she spent daily in the restroom. Although the beginning of my  interest in medicine is hard to pin down, it may have begun with the Reader’s Digest’s  Joe and Jane series.

The most popular series ever published, over 7,000,000 reprints were sold (imagine that, paying for an article!). The one I recall most vividly is the one about Joe’s prostate. It may be that the beginning of the article made a big impression on me:

I am one of the hot spots in Joe’s body, a design nightmare for which Nature should hang her head. Red-brown, about the size of an English walnut, I produce a variety of grief. I can disturb Joe’s sleep by requiring several trips to the bathroom each night–or kill him with uremic poisoning. If Joe lives long enough, I will become a cancer site far surpassing the lungs in importance.

Or it may have been the fear of growing old (and the risk of the examining finger) that this article instilled me with:

Most important, Joe should have a rectal examination once or twice a year. This takes only a minute during yearly physical examination and is about the only way to find prostate cancer early enough for a surgical cure. If there doctors examining finger discovers a hard, button-size nodule in my otherwise soft rubbery tissue, he considers it cancer until he has proved otherwise.

This article was initially printed in the 1970’s. At the time  man had finally made it to the moon and if you could do that then how difficult could a cure for prostate cancer be? It turns out, very difficult. The medical profession has never developed a satisfactory method of early detection and treatment for cancer of the prostate. The strategy of frequent digital rectal exams that traumatized me as a pre-teen never panned out. An enzyme (PSA) was discovered to be higher in some with prostate cancer than in those without prostate cancer and for the past two decades optimism reigned in the “we’re gonna beat this cancer” camp to contrast with the pessimism of the “screening leads to unnecessary tests that don’t help people to live longer” camp. Interspersed were celebrity testimonials from people who were not dead of prostate cancer such as Bob Dole and Robert Goulet.

Prostate cancer screening was once again in the news this week. The US Preventive Services Task Force has changed their recommendation from an I (insufficient information to recommend for or against screening in an asymptomatic population) to a D recommendation (screening not recommended because the patient will more likely be harmed that helped by screening). The task force took two years to issue the recommendation because, in the words of the leader:

“I looked at this and said, ‘I know [controversy] is going to happen with prostate cancer for all the same reasons [as breast cancer], and we absolutely have to have the science right,’ ” he said. As for the resulting delay, Dr. LeFevre said, “I will take full blame and full credit.”

Urologists feel very strongly that they are in the right:

“All of us take extraordinary issue with both the methodology and conclusion of that report,” said Dr. Deepak Kapoor, chairman and chief executive of Integrated Medical Professionals, a group that includes the nation’s largest urology practice. “We will not allow patients to die, which is what will happen if this recommendation is accepted.”

Ultimately,we need to away move from a very expensive  but not very effective health care system.I suspect prostate cancer screening is one of the expenses we will need to do without as perhaps other types of cancer screening as well (as written about here). The USPSTF is an amazing resource that will allow for an impartial review of the data with a recommendation based on fact and not emotion. Unfortunately, when it comes to the prostate, emotion seems to rule.