COVER
                                                 ÂGrassroots Forum
Disclosure of Prostate Cancer Treatment Effects Needed
by
Mario Menelly
Summary of Proposed Bill
To require that all urologists, oncologists and all other members of the medical profession hand out a standard informational disclosure form upon the diagnosis of Prostate Cancer to the patient.
The medical professional must clearly review the details of the form with the Patient. The patient and the physician must both sign the form. No treatment can be administered unless this form has been reviewed, signed and an agreed upon waiting period has expired.Purpose of Bill
To provide all newly diagnosed prostate cancer patients a plain English summary of all currently viable treatment methods (including watchful waiting); possible side effects such as impotence; incontinence; urinary and rectal problems, etc., and their probability percentages for each treatment method, and cancer recurrence rates at five and ten year intervals.
The reason for this bill is to provide some standard, easily understood, information of all possible treatment options to the newly diagnosed patient that he can use to evaluate his treatment choices and make a more informed decision. The treatment of prostate cancer is so diverse and confusing, even for the best informed patients and their physicians. Whether the patient undergoes a radical prostatectomy; seed implant and/or external radiation; cryosurgery; combination hormonal treatment (whether continuous or intermittently, alone or in combination with the aforementioned treatments), or watchful waiting. What about alternative treatment modalities such as PC-SPES?
There should also be a glossary that describes the following terms and their relevance: PSA test; free PSA (or PSA2) test; Gleason score; Ploidy Analysis; Cat Scans; Bone Scan; MRI's (endorectal, spectroscopic); ProstaScint Scan; Partin tables, and any other relevant treatment, diagnostic test, or related term.
Too often, the patient, upon hearing the horrible news of his diagnosis will choose to undergo the first recommendation of his current physician, which many times may not be the absolute best under the patient's current circumstances. The choices are many, the side effects are bad and likely and the recurrence rates are high even under the best of circumstances; so the patient needs to be as informed as he can be. When you couple the complexity of proper prostate cancer treatment with the average advanced age of the patient at diagnosis you further exacerbate a situation that is difficult for anyone to deal with.
Methodology
The medical profession can assign the drafting of this informational disclosure statement to the appropriate professional association such as the American Urology Association and/or others. The draft form should be sent out for comment to any of the several patient groups such as PAACT, US-TOO! and the Education Center For Prostate Cancer Patients. Once approved, it should be immediately put into practice.
Enforcement
No treatment can begin unless a copy of this signed form is presented and available to the administering agency, hospital or doctor.
Impact of the Bill
Doctors may have to take a few minutes more with each patient. One can argue that this is something that should always be done with each patient at diagnosis anyway. It will compel professional societies to work at drafting language across the various treatment methods. This is also an inherently good thing, which will expose the patient to other choices that may be helpful to him - rather than his doctor's possible bias).
©Mario Menelly, December 14, 1998, All rights reserved.
Mario Menelly took part in a PC-SPES study at the Cancer Institute of New Jersey. "I was patient number 3," he says. You may have seen him interviewed on CBC TV-News.
Mario writes (December 1998): "I am a prostate cancer survivor since my diagnosis in September 1996. I am 46 years old. My PSA was as high as 122.0; PAP of 10; Gleason score of 9; positive abdominal lymph nodes (via ProstaScint Scans); positive seminal vessicles (via MRI's), fatigue and urinary symptoms. I have chosen to treat myself with diet, supplements, and PC-SPES. I have received no conventional treatment at all. Today my PSA is 0.29 and has been below 1 for almost a year. I feel fine!"
Mario Menelly, of Wantagh, N.Y., lost his battle with prostate cancer on June 18, 2004. Mario, who was diagnosed with prostate cancer in 1996, was a volunteer and patient advocate around the country and in NYC. He died quietly at home in hospice surrounded by immediate family.
E-mail