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DanB1973's avatar

My friend’s husband (“John”) was the subject of this scam last year. 60-year-old, always healthy and problem free, active in various sports, suddenly faced typical prostate problems with urination. Consulted his urologist, who “didn’t like” what his finger found deep down there. PSA was off the charts, so John was not amazed when the urologist offered him prostatectomy right at the first consultation, based only on the PSA result and nothing else.

John didn’t like this course of action. So they agreed on HOLEP. During the consultation after the treatment, John was offered a drug “to put you in an andropause”. He was explained that testosterone fuelled his cancer (still without any laboratory results, only finger-deep diagnosis, no testosterone tests), so the best thing would be to reduce his testosterone levels to zero, if possible. The urologist did never refer to it as castration. John was offered “pills or injections?”, and he chose a prescription for pills.

This time John spent the whole night reading and learning about his condition. He found that the pills are #1 drug in the world used to castrate men. The manufacturer of the drug proudly uses the word “castration” as the milestone to achieve, the sooner, the better. John found only one “study” on the safety of the drug in the treatment of prostate cancer, provided by the manufacturer, and in comparison with the other drug he was offered (the injection). When he read the “study”, he was in real shock.

Adverse events caught his attention. Any adverse events in both groups (622 men for pills vs. 308 men for injections): 92.9% vs 93.5%. No difference.

Serious adverse events, in other words (according to FDA): death, life-threatening events, hospitalization (initial or prolonged), disability or permanent damage, congenital anomaly/birth defect, required intervention to prevent permanent impairment or damage (devices), other serious (important medical events - any event that may jeopardize the patient and may require medical or surgical intervention (treatment) to prevent one of the other outcomes), were reported at 12.2% vs. 15.3%, or 76 out of 622 men in the pills group - one out of eight men practically lost their life as they had known it as a result of using these pills.

7 men (pills) and 9 men (injections) died in consequence of using the prescribed drugs. The manufacturer reports it openly. In other words: 1 out of 89 men who took pills and out of 34 who chose injections died.

The manufacturer reported also MACE events, the term which FDA uses for acute myocardial infarction (AMI), stroke and cardiovascular mortality. 18 men in the pills group (1 out of 35) and 19 men in the injection group (1 out of 16) suffered MACE.

The horror went on. Other AEs reported in >10% of the participants included fatigue: in 134 out of 622 men of the pills group (1 out of 5) and in 57 out of 308 men in the injection group (1 out of 5). Incidentally, John asked his urologist about adverse effects from these pills. He was told (verbatim): “you may feel tired”. Not a single word about death, heart attacks, permanent disability. The urologist forgot to mention that this “tired” is like you have never experienced in your life before. The manufacturer reports it in their “study”, explaining that the tiredness (along with continuous constipation or diarrhea and hot flashes) caused suicide ideation in participants and 11% of the men from the pills group and 9.8% of the injection group discontinued their participation in the study as a result. Translation: 1 out of 10 participants suffered tiredness at the scale where suicide ideation seemed a better option. John never heard about it from his urologist.

At the next consultation, John was asked why he hadn’t bought the pills. John showed his urologist a copy of the “study” and pointed at the AEs tables. “Oh, I know this study,” said the urologist, blowing his cover for failing to ensure informed consent. “All drugs have such adverse effects,” was the next sentence. Wow. And the third one, to make sure: “So, you didn’t buy the pills at all?” Yes, sir, you will not get your commission from your distributor this time.

John was never invited for another follow-up consultation, was never offered any alternatives, literally any further care after the HOLEP. His urologist conveniently forgot to refer him for PET scans. And John was told right before he left: “From now on, I can consult you cash only.” John is fully insured and his insurance covered HOLEP and covers all prostate conditions, by the way.

Lessons from John’s real-life story: read medical literature, self-educate, ask questions and demand answers at the level of your understanding. Do not hurry. Arrange all details with your doctors. Just in case, find alternative doctors. John didn’t. He and his wife decided that they will never go back to mainstream HC for help.

John said to me: “I’m 61. I‘ve got my share of work, family life, travel. If I am to die soon, I will die. But I won’t cripple my body with chemo or radio. For what? A one month extra of living in last-stage uselessness for others, watching their helplessness and sadness? C’mon.”

Don't Know's avatar

I turned 50 in 1995 and the doctor recommended my first PSA test. It came in at a 9.8 and he was worried. He recommended a biopsy and they didn't find cancer, but he felt that I should be monitored regularly. We did that and I tracked my "doubling time," the only useful part of PSA testing. It began to reveal that mine was slow growing. A few random stick biopsies over the next several years continued not to find anything. By 2005 my PSA was approaching 30 so I went to a specialist who did a color-doppler guided biopsy. He found abnormal cells, grading the bulk a Gleason 3 and a small part a Gleason 4. 3 + 4 = 7, not aggressive, but not benign. They recommended immediate surgery. I was 60 years old. I declined. I asked several times "what is it about my cancer that makes you think I need surgery?" He answered each time that the cancer diagnosis is scary and that men just want the cancer removed. Finally, I acknowledged that cancer is scary and he seemed relieved, as he'd thought he'd made his point. Then I said, "I must admit that it frightens me, but as a PhD trained psychologist I work with fear all the time, why don't you send me to a therapist instead of pretending to treat my fear with a scalpel?"

I've not had a biopsy since (I'm turning 80 in two months). I stopped getting my PSA checked several years back. It was still doubling a little over every four years and was over 300. I take Flomax and can pee normally. Also, I can still keep an erection and I'm hoping to make it to 90. We'll see.

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