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?