I read the proposed draft Mathematica/CMS “Non-Recommended PSA-Based Screening” clinical quality measures with great alarm. In my view, this is a thoroughly misguided approach and appears to be an exercise in well-intended but myopic avoidance of a genuine problem. That problem is two-fold: First, the issues that surround prostate cancer are poorly understood by most lay persons and unevenly understood by physicians. Second, while our society urges transparency in the practice of medicine, the importance of clearly communicating the implications of an early detection of a possible diagnosis of prostate cancer cannot be understated.

I am a 75-year-old prostate cancer survivor. While I was in my mid-50’s, I had the benefit of participating in a major study at Vanderbilt University that focused on a prostate cancer issue (long before I was diagnosed), which routinely performed digital rectal exams and measured my PSA for seven years. After I moved back to Arkansas, my doctor continued to monitor my PSA, and noted it had begun to rise steeply. He referred me to a urologist, who eventually recommended a biopsy, which indicated the presence of cancer in the prostate. He recommended waiting for six months, after which the PSA had accelerated further. The second biopsy showed a rapidly-growing tumor, measured with a Gleason 7 score. I elected to have it removed by robotic surgery. Although the pathological report of the operation indicated no residual cancerous tissue, the post-operation PSA continued to rise. Subsequent treatment with hormones was temporarily effective. I had a variety of local scans, none of which could find the source of the continued presence of the rising PSA. I was referred to the Mayo Clinic, where Dr. Eugene Kwon has developed a PET scan using C-11 Cholene. The C-11 scan indicated the presence of a wide distribution of prostate cancer cells throughout my body, none that were obviously active. After three years, a scan finally showed two tiny prostate cancer tumors in my lung, which are currently being successfully treated with a combination of chemotherapy and hormones. My PSA at the moment is .45 and headed to zero.

I am deeply grateful that the combination of early detection through PSA testing, combined with surgery and subsequent treatment, have been successful. Any consequential side effects are minimal, compared to what I know would have happened had I not had a solid base of reference testing that allowed us to note a dramatic change in the rate of change in the PSA in time to watch closely and act. Without the benefit of this early information, plus the careful advice of my physicians, and the guidance of the Arkansas Prostate Cancer Foundation to arm me with solid information, I would now be dealing with a serious case of potentially untreatable metastatic prostate cancer.

My case is no different from thousands of other men who learned early on that there was a possibility of prostate cancer and dealt with it. Through the peer-to-peer networking of the men and their families who had been diagnosed or were survivors, fostered by the Arkansas Prostate Foundation, I saw the wide array of persons who were dealing with the harsh impact of hearing the “Big C” was inside their bodies. I saw how panic, distress, and poor information by medical advisers led many folks into bad decision-making that had irreversible consequences. That said, I also saw the calming effect on persons who got solid information about options, about the differences between watching and waiting and impulsively reacting too quickly without understanding the consequences.

It is critically important to differentiate between having the early warning of a possibility of prostate cancer and how one makes decisions on what might be done. I am firmly convinced that the act of measuring PSA as part of the essential early warning of the need for action is beneficial…IF that early warning is accompanied by solid guidance by the medical community and support groups to prepare a person for the next step. That is why I am so alarmed at the thrust of the proposed guidelines, which seems to dismiss the importance of arming the patient with information upon which to base a good, well-informed decision. The PSA may be imperfect, but it’s better than nothing. The information it imparts is not the problem. It’s what happens next that is the issue—without knowledge, bad decisions are inevitable.

The proposal seems to be the equivalent of book-burning—it dismisses the importance of arming the patient with knowledge, and, instead denies access to this early warning and presumes this information will be harmful. Wrong, wrong, wrong. Please focus instead on putting a high priority on MORE screening, not less, and better preparation of the medical community for advising their patients of their options. To deny the patient the early warning is to condemn them to a fate that could have been prevented.

We are already seeing a drop in the reporting of prostate cancer diagnoses as a result of the misleading negative publicity and outright misrepresentation of the so-called “dangers“ of PSA testing. Our own medical school is now de-emphasizing prostate cancer screening with incoming students. Physicians are being intimidated with threats of penalties for ordering PSA tests. This is absurdity at its highest. It focuses on the wrong things. You are looking through the wrong end of the telescope. Please reconsider. You presume so much that is flat wrong.

The patient and the doctors should be better informed, and that starts with not denying the patient the benefits of an early warning tool. We know there are better tools than PSA blood testing on the way, which will at some point obviate use of the PSA. We welcome those. But we are terrified at the implications of your proposal, which will inevitably result in an epidemic of prostate cancer victims, whose disease will have gone too far when they could have been prevented with early warning.

Charles T. Crow, Chairman Emeritus
Arkansas Prostate Cancer Foundation