The End Of My Life
Man, Once Born, Will Die.
Not a revelation but a fact to use as the starting point of my narrative. As of this writing, I am 78 years old and have terminal prostate cancer. I am no different from hundreds of thousands of men my age and younger who are in the same condition. The thrust of this narrative is to implore men aged 50 or more to have a PSA done, and if the result is 4.0 or less, repeat the PSA every six months for the rest of your life.
PSA stands for Prostatic Specific Antigen and is the single most useful test in the early detection of prostate cancer. But there is an enigma inside the previous statement, to whit, a negative PSA does not rule out cancer and a positive PSA may not be due to cancer.
I will make it personal and relate my experience. I had my first PSA in October of '97 and the report was 2.4. The normal PSA is considered to be anything below 4.0 (some centers advocate a lower normal, 2.5) A year later my second PSA was 3.7. In October of 2000 my PSA was 4.3. Two months later, I repeated the blood test and the PSA was 5.6, the significance being it was rising on a steady upward slope. I talked with my urologist and told him that I wanted a biopsy. I had my first biopsy in December of 2000 and the results were negative for prostate cancer.
A moment here to describe how a biopsy of the prostate is performed: It’s done under modified local anesthesia in the doctor’s office. Guided by ultrasound visualization, punch biopsies are taken using a needle inserted transrectally into the prostate gland. The usual method is to take six to eight punches, three or four on each side of the prostate.
To refresh the anatomy of the area, the normal prostate is a walnut sized gland that surrounds the urethra. As men grow older it is not uncommon for the prostate to become enlarged and cause a restriction in the urethra. This is known medically as benign prostatic hypertrophy. It means simply that the prostate is large but not diseased in any way. The problem is that benign prostatic hypertrophy can give an elevated PSA. The PSA may be elevated due to an inflamed prostate or an infected prostate or many other causes including lab error. Urologists will pour out statistics to make the case. They make the point that an elevated PSA does not necessarily mean that you have prostate cancer. The only way to make a diagnosis of prostate cancer is to find cancer cells in a biopsy specimen.
So far it sounds kosher but there is a weak link in the thinking. There are thousands of men (and I am one of them) who have had multiple biopsies and the pathologist can find no cancer cells in the specimens presented and therefore gives a negative report. But the serial biopsies were taken because of a continuous rise in PSA. In the absence of any other cause, a continuous rise in PSA is ominous and in my opinion should be considered cancer and efforts to make a definitive diagnosis are imperative.
No urologist in the United States will do anything to remove or to ablate the prostate unless there is a positive tissue diagnosis. The PSA can go sky high and in most cases frequently does but the patient is powerless to have any proactive treatment. The patient will hear statistics of men with elevated PSA’s who have prostatitis, large hypertrophic glands and other conditions causing the PSA to be elevated but it does not mean they have cancer. It’s like a snake coiling around a pole eventually eating its own tail.
After my third negative biopsy, following a significant increase in my PSA, I was sure that the elevation was due to tumor. There was no other medical reason for a high PSA. I wanted treatment. I wanted a prostatectomy, Brachytherapy (radiated seed implants) or high beam radiation. In short, I wanted my prostate out and it didn’t matter to me how they did it. What did matter to me was that I had no control over my destiny. Regardless of the many times I was told by my urologist that there were many patients with high PSAs and negative biopsies who did not have cancer, I was not happy with a ‘do-nothing’ attitude. I begged him to remove my prostate. I made calls to several large medical teaching institutions in the USA and was told once again that without positive tissue diagnosis there would be no intervention.
I was furious, frustrated and disgusted with the practice of urology.
I’m a retired physician and I was taught that early diagnosis and early intervention was the way to stay on top of cancer. In a 10 year period from '97 to '07, I had 15 PSAs, starting at 2.4 and progressively rising to 47. During that time I had and 4 biopsies, all reported negative for cancer. In ‘07 a 5th biopsy was done and not only was the tissue cancerous but it was a Gleason stage 8 (the highest is 10) That meant my tumor was highly aggressive, more than likely outside the capsule and metastatic. The only treatment left was high beam radiation. Then, everything that modern medical science could provide, ie,. oncology/radiology/chemotherapy, was thrown at me with a vengeance. By that time, the tumor was in my blood stream and happily growing in my spine, pelvis and rib cage.
At this point the highly esteemed medical logic does a 180° turn. The most important feature now becomes the PSA. That which was equivocal prior to positive tissue diagnosis is now the guiding beacon to gauge the speed with which the tumor ravages the patient.
I think the system is lousy and it stinks. (Why don’t you tell us how you really feel, Charlie?)
I think that any man of sound mind and reasonable intelligence should be able to decide if he wants his prostate removed. It is not a casual decision but one made after considerable anguish and soul searching. If, after two-year period of time, the PSA continues to rise and there is no sign of anything else that would elevate the PSA, bet on cancer. Women can elect to have a bilateral mastectomy, people can elect to have a sex change operation and there are many other instances of patients requesting and procuring elective surgical procedures.
Not so with men in the United States. You can stand on your head and whistle Dixie but you can’t have your prostate removed regardless of how high the PSA is if the doctors can’t produce a positive tissue diagnosis. There are several issues here, one being the competence of the physician doing the biopsy the other being the competence of the pathologist reading the tissue. Another issue: regardless of the competence of the urologist, the needle just may not hit the right spot. He can only aim the needle at the posterior aspect of the prostate. There is no way a transrectal biopsy can get to the anterior aspect of the prostate. One would think that after two or three negative biopsies, a more aggressive approach to diagnosis would be the way to go. By that I mean multiple biopsies taken under anesthesia, (I am now aware that there are several centers that do so). How many times was I told, "There is a real risk of losing sexual activity if you remove the prostate" and "what if you find that there was no cancer". My answer.......I would rather live.
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