Terminology Matters: Let’s Not Call It “Prostate Cancer”

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If ever there was a bombshell at a National Institutes of Health Consensus Development  meeting, it happened today at the panel on active surveillance for prostate cancer.  The Panel said that terminology matters and that men who have PSA screening results that read 10 ngs or less with a Gleason Score of 6 or less should no longer be told that they have “cancer.” “The word “cancer” sets off an emotional response,” said Barry A. Kogan, MD, part of the Consensus Development Panel, and chair of urology, Albany Medical Center, Albany, NY, during the briefing. According to the Panel’s preliminary report, more than 100,000 men fit within the thresholds above, and are candidates for active monitoring.

A Seachange in Practice

If active surveillance gained visibility and credibility, it would be a seachange in practice. The Panel declined to say what term should replace “cancer,” instead leaving it to expert pathologists and urologists  to sort out the science and meaningful language. They also compared low-risk, low volume disease to entities like cervical dysplasia and actinic keratoses.

Yet abandoning the “c” word for low-volume, low-risk disease would bring us full circle from the days of John Wayne talking about the “big C.” Peter Albertsen, MD, chief and program director, division of urology, the University of Connecticut, Farmington, CT, and a solid researcher and leading advocate for active surveillance, spoke at the 3-day State of the Science meeting. He told Patient POV: “I don’t think we can abandon this terminology,” a telling remark coming from a strong proponent of active surveillance.  If he expresses discomfort with abandoning the “c” word, I suspect that it will not fly. He was unaware of the terminology change when we spoke, but he said that he “would be more comfortable with calling it a very slowly progressing cancer.” Where Albertsen sees the major value of the conference is in giving active surveillance more visibility and credibility.

Finding  Doctors Who Back Active Surveillance

In the briefing, Michael Barry, MD, internist at Massachusetts General Hospital, Boston, MA, and president of the Foundation for Informed Medical Decision Making, said that men should ask around if they are looking for a doctor who uses active surveillance protocols.  That’s a fine suggestion, if in fact such doctors are plentiful. However, as I showed here before , a New York man consulted with at least 5 physicians before he headed out of town to find someone who would follow him with active surveillance. It exhausted him. In terms of overuse of medical care, New York often scores high on the list.

I see this as problematic.  Current patient satisfaction dimensions are chock full of general questions like how long a patient has to wait to get in for an appointment, whether the office staff is congenial or not, or whether the office is clean enough, but absolutely no information that matters so much more to patients, like the volume of procedures doctors do, their orientation, and there are no outcomes data that can be trusted.  This needs to shift, if all the academic scholarship is to be worth its weight.

Some doctors are simply too entrenched in treatment for a variety of reasons so that active surveillance is anathema. Further, many physicians claim that they have active surveillance protocols, but the exact thresholds beyond which they would advise treatment and whether they are based in science or opinion are not easy for patients to pinpoint. For example, many doctors may be uncomfortable with cutpoints as high as 10 ng PSA and Gleason Score of 6 less for “cancer.”

I asked Ashutosh Tewari, MD, Director of the Robotic Cancer Institute, Cornell University Medical Center, NY, to clarify his position on active surveillance. He has gone on record at urology meetings as supporting active surveillance and has invited leading researchers who back it to speak with residents. He emailed me back: “Active surveillance is the right treatment and we do it here all the time.” Later, he called me to tell me that he has “hundreds of men on active surveillance.”  Tewari is a leading robotic prostatectomy physician internationally. Robotics is an extremely lucrative field. Many people might wonder whether people invested in robotics could be totally objective. One physician who asked not to be named, remarked: “There is too much money to be made to really push it [active surveillance].”

Perhaps  one day, volume of procedures will not be so inextricably linked to physician income. Health care reform with incentives for value and good outcomes would be a start.

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3 Responses to Terminology Matters: Let’s Not Call It “Prostate Cancer”

  1. Blair Bolles says:

    This is a lively bit of news. Thanks for covering it so well. What’s more shocking? Finding out that you were told you had cancer when you didn’t or being told you don’t have cancer when you do? Give these panels credit–they are bold enough to jump into the fray.

  2. Dolores Rogers says:

    Thanks for illuminating this part of the cancer world. If doctors were paid on a capitation basis, rather than income for procedures, we could arrive at health care reform and good outcomes

  3. Wendy Laubach says:

    “Perhaps one day, volume of procedures will not be so inextricably linked to physician income. Health care reform with incentives for value and good outcomes would be a start.”

    How might we fix things so that the volume of procedures correlated with value and good outcomes? Wait, I know: more people should be paying for their procedures with their own money, and therefore consulting no preferences other than their own assessment of the value they are receiving and the likelihood that they will achieve a good outcome. We could start with very low-premium, very high-deductible health insurance policies. Get the third party out of the payment process as much as humanly possible.

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