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Gleason 8 diagnosis at 51: Likely opting for surgery

Prostate Cancer | Last Active: 7 minutes ago | Replies (27)

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@surftohealth88

I am doing the same thing, blaming myself for not second guessing a specialist (urologist) . I can write a book of how many times I had to fight for the right diagnosis, right treatments, correct tests for myself, my husband, kids and other family members. If I did not do that (and I am not exaggerating), I am not sure if my husband would have been alive today, and also perhaps one of my daughters. I trusted this urologist only because he was recommended by my husband's cardiologist to whom I learned to trust over years, and that was mistake. But we both should stop blaming ourselves for sucky job other people do : (((, it is not fair to blame ourselves... I'm now working on that part very hard and trying to concentrate on next steps that need to be taken. What else can we do ...

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Replies to "I am doing the same thing, blaming myself for not second guessing a specialist (urologist) ...."

Not sure if you’ll remember this, surfer, but about 7-8 years ago there was a huge upheaval in the world of urology; it colored every aspect of prostate cancer and most importantly, its diagnosis.
In a stunning reversal, a distinguished panel of experts accused the urologic community of overtesting and overtreating.
There was even a book written called “The Invasion of the Prostate Snatchers” - believe it, it’s on Amazon. Suddenly, urologists found themselves accused of mutilating men for profit. Even the man who discovered the PSA antigen test wrote articles about overtesting and how his test was never intended to be used in this fashion…WTF?
I myself was in the middle of this sea change. I suddenly became terrified of my annual digital exam and PSA - they were going to find something and ruin my life over something that “I would probably die with, not from”.
I did have urinary symptoms but kept them to myself - I did not want to be mutilated for profit! Eventually I couldn’t urinate so I was forced to see a urologist. A wonderful woman, she diagnosed BPH ( NO biopsy - hooray!) and performed a Green Light Laser To alleviate the symptoms. I was cured….
Flash forward one year, my PSA moved up to about 5.1. She told me that she really should do a biopsy but since my DRE was absolutely normal - and I had voiced my awareness of the overtreatment accusations in the press, she deferred to my wishes.
Added to this was the fact that I had met many men who had been biopsied rectally and quite a few wound up hospitalized with blood infections. My closest friend at the time, biopsied by the Dept head of Mt Sinai hospital, spent 14 days in the hospital with a punctured bladder, internal bleeding and sepsis….
Doctors now had to ask men if they wanted their PSA tested, and if it came back higher than 4.0 they would HAVE to refer them to a urologist simply to avoid being sued for negligence. All of this REALLY happened.
But after about 3 years of this “don’t ask, don’t tell” policy, the rates of lethal prostate cancer began to rise - what a surprise!! So we find ourselves today at the other end of the pendulum swing - testing beginning at 40, genetic testing just in case, MRI’s, PSA, PSE, various urine tests….you get the idea.
So when you say “If I was a doctor….” You are imagining yourself in TODAY’s environment; you are reading articles written BECAUSE of what happened a short 7-8 yrs ago; you are calling certain doctors lax or lazy - but you should be calling them wary or perhaps gunshy from having experienced that very real witch hunt accusing them of mutilation for profit. My own cancer probably progressed to the Gleason 4+3 unfavorable and two rounds of treatment because of this very real medical/political battle going on at the highest levels. I guess I could cry victimhood, but I made my decisions knowing (or maybe not knowing) what was being recommended and followed AT THAT TIME. It’s totally different now.
I don’t doubt your sincerity or your compassion for those who suffer - it is admirable. But there is also something in medicine called “triage” and it refers to focusing the attention on the most seriously afflicted, those whose situations are life threatening. Your husband’s normal DRE’s and fluctuating PSA’s had probably been seen in countless other men with no cancer present, so perhaps they were not convinced to more actively monitor him; his status was not considered dire at the time but the biopsy changed that and that is it’s purpose. I doubt your husband’s ex-urologist is beating himself up for missing something since he did find the cancer, right?Doctors practice triage unconsciously and routinely every day, no matter their field or specialty. They don’t have the luxury of treating a case of acne the same as heart failure since triage dictates that the heart patient get care first.
When you sit in the ER for hours and see patients being treated before you - even though you were there before them, that’s triage at work. We don’t like it, our possibly broken foot is throbbing, but the heart attack takes priority.
So I ask you to look at your crash course in prostate cancer this past week in light of the here and now, remembering that doctors decisions are invariably colored by many past experiences, both good and bad. I am not talking about gross negligence, but simply the way some treatment decisions are made….Twenty twenty hindsight is always perfect and if only we knew then what we know now….Best
Phil