NCCN issues patient guidelines on prostate cancer diagnosis and management

At some point in the past 3 weeks or so, the National Comprehensive Cancer Network (NCCN) Foundation has quietly issued its new NCCN Guidelines for Patients™ on prostate cancer diagnosis and management. There seems to have been little or no attempt to publicize the availability of these guidelines to the patient and patient advocacy communities, and the value of these new guidelines may be a matter of opinion.

For the assiduous and educated reader, these new guidelines may be helpful, particularly in providing introductory information to the management of progressive prostate cancer. However, based as they are on the most recent update to the NCCN’s guidelines for physicians, the patient “booklet” is 76 pages in length (inclusive of an extensive glossary), which is going to be overwhelming for most newly diagnosed men with localized disease. Furthermore, these guidelines don’t touch on one of the most crucial issues — the appropriate use of PSA testing in the early detection of prostate cancer (which is also dealt with separately in the NCCN’s physician guidelines).

On the one hand we want to praise the NCCN for providing a patient version of their physician guidance. On the other hand, we are very unhappy with the material provided, which does little to actually help the patient understand how to make good decisions about the management of localized disease. A great deal of information is imparted in this document — but a very limited amount of knowledge can be gleaned from it without the newly diagnosed patient doing more research. As just one example, there is no explanation of the fact that Gleason scores of 5 or less are rarely assigned to the cancer of a newly diagnosed patient today — or why that is the case. As a consequence, a newly diagnosed man who uses this booklet and has been told that he has a Gleason score of 3 + 3 = 6 could be very puzzled by the idea that he might only have very low-risk disease.

We had been hopeful that these new NCCN guidelines would find a way to clarify some of the more complex issues for patients in a helpful manner. Unfortunately, we do not feel that the NCCN has accomplished such a goal at all.

Having said that, we should point out that the NCCN Treatment Summary on prostate cancer (which is available on line but not as an actual booklet) is, in our opinion, a great deal easier for newly diagnosed patients to follow, and it does deal (albeit briefly) with the issue of early detection and PSA testing. Materials that comprise this “treatment summary” include:

Even so, the materials still fail to note the comparative rareity of a Gleason score of 5 or less today, and there are a number of other odd statements, of which the following stood out in the section on PSA screening:

Experts estimate that deaths from prostate cancer have decreased 40% since PSA testing became widespread in 1992.

Now it is true that, according to the SEER data, the age-adjusted rate for prostate cancer-specific mortality has decreased from 39.22/100,000 in 1992 to 23.00/100,000 in 2007 (a 41.4 percent reduction in the age-adjusted rate over 15 years).  However, this type of statistical manipulation can be misleading, and whether the actual prostate cancer-specific mortality rate has dropped by anything like 40 percent because of the availability of the PSA test is a different question. Indeed, since the age-adjusted prostate cancer-specific mortality rate in 1975 was only 30.97/100,000, this implies a 32-year reduction in risk of prostate cancer-specific mortality of only 25.7 percent. We’ll let the statisticians fight over that one. Either way around, the prostate cancer-specific mortality rate has quite certainly been dropping (although the American Cancer Society projected 32,050 prostate cancer-specific deaths in 2010).

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