New to Prostate Cancer with a boatload of questions, but who to ask?

“ He claims to know more than the Mayo doctors but does not say what he knows.”
I did not read where he says he is smarter than the doctors. But there are a bunch of bad urologists out there. Ive met them.

“Complains about a gang of doctors who make up the PSA rules to harm us”
Yes, a gang/group of doctors at the top do make up the rules that all of the lower docs must follow. One of their guidelines says to not check mens PSA. Just read the posts. There are many here who report their first PSA and its like 60 and they are already metastatic.

“and also calls for mandatory PSA testing. “
I agree (see above). PSA should be standard with every routine blood panel for middle aged men and above.
PSA tests are very cheap.
Why would you not look?

Hi, I was on vacation for a week ✌️ and I enjoyed every minute of it ✌️
I never once said I was smarter than any doctor anywhere !!! Except maybe my PCP who believes in not ordering PSA testing !! Given the FACT that 1 out of every 9 men will get prostate cancer it’s a no brainer to test every single male starting at at age 50 !! So yes he is stupid and I’m not !!!
And here’s what I know about the group of doctors who make up the rules for doctors regarding PSA testing !!! A group of 10 doctors make the rules regarding PSA testing and NOT 1 is a CANCER doctor nor Urologist!!! Now think about that !! I was told this by my Radiation Oncologist who attends Seminars and speaks at seminars on a regular basis. He is in The Know when it comes to who is making up these stupid rules regarding PSA testing !! But there’s No Doubt in my mind that if any male in that group of 10 doctors are 50 or older they have had a PSA test !!! They aren’t stupid but money talks and it costs people their lives !!
So this is where Insurance Companies come into play !!! You can believe whatever you want ✌️ But insurance companies ( of every type ) make the rules !!! And pay doctors, lawyers ( Workers Compensation is a prime example of this !! ) I know because I went down that route and it’s the Biggest scam I have ever seen !! ) Doctors getting paid by insurance companies on one side and doctors getting retained and paid by lawyers and your settlement on the other !! Another example is Women’s mammograms as it took years to get them to be mandatory once a year because insurance companies said no until so many women were getting and dieing from breast cancer they had no choice to pay for them !!
Opioids are another example that were being pushed by pharmaceutical companies and Doctors were giving them out like Halloween candy , why because doctors were getting huge kickbacks for being the Pushers and the more they pushed the more money they got !!
Here’s a Question ??? Why no Mandatory PSA testing but yet now we Cologard who causes great fear in many people because they come back with a positive hit for colon cancer and after Bloodwork and a Very Delightful Colonoscopy they find there is No Cancer !! But yet PSA testing isn’t recommended because it can cause unnecessary testing ???
Bottom line is the old saying Money Talks is a very true statement and this is causing many, many deaths including my own !! So Yes, I know these things are True !! And I know more ✌️

"I never once said I was smarter than any doctor anywhere !!!" I believe you said: "I know a few other things about this Non Testing that some may not know including even Mayo Clinic Doctors !!!"
I'm not sure there is "A group of 10 doctors make the rules regarding PSA testing". It is true that, for a short period of time, a general consensus developed that PSA tests were given too much credence and leading to needless biopsies, which has risks. But nearly all doctors and many patients understand that PSA is a simple blood test that is a good first step, that it should NOT automatically lead to a biopsy, and that it can also fail to catch cancer. It is useful but not definitive. Yes, insurance companies have too much say in our health care and their concern is profit, not our well-being. I'm not aware that any medical tests are "mandatory". Perhaps you ascribe some other meaning to that word (like "highly recommended")? There are lots of Americans who would march in the street with their guns if medical tests were mandatory. But a PSA test after a certain age should certainly be highly recommended and the norm (and that is pretty much the case today). Cologuard and PSA tests are very equivalent as predictors of cancer. A high PSA might cause "great fear" in some folks when there is actually no cancer. Patients just need to understand the uses of both the PSA and Cologuard test. Remember that you have a 50% chance of living beyond five years.

The amount of information about prostrate cancer can be overwhelming. It is why you need a good "patient first" urologist and primary care physician. But don't forget to get second opinions and read information available on medical facilities web sites. Mayo, Cleveland Clinic, John Hopkins, NIH, American Cancer Society, etc.

Comment on PSA. It really is a simple test to monitor but you really need a knowledgeable and current awarness physician when using it. When my prostrate cancer was diagnosed I was 3.75 which in UNDER the normal range for prostrate levels. However my PCP did not like the rising PSA levels each time we took it and referred me to a urologist. MRI revealed suspicious areas and biopsie confirmed cancer. But caught at a very early stage.

So use a PCP and uroligist that look at everything and recent medical information on prostrate cancer. If you don't have one or one that is not "patient first" or have the latest knowledge of treatments get second opinions and third opinions. You should never have a medical provider who is offended by seeking second opinions. In fact should recommend it.

I changed treatment provider because they did not offer proton radiation like anohter provider did. I did so with consultation with my PCP, reading medical information, getting feedback from other major medical providers, and then made a personal decision. If you are not informed and knoledgeable of your cancer and treatments available you need to be.

I agree that the rise is important, not necessarily the number. I was 4.75, but it had doubled in 1 year. A biopsy showed gleason score 10. 80% of 12 samples with cancer. Stage 3c. 45 radiation sessions presently have 11 months of orgovyx in. Few symptoms, some hand pain. Lots of exrcise and no red meat, added protein and collagen. Naps during radiation. Stay busy and positive, no ED.

I agree with the statement in this thread. There are so many medical institutions that do not perform PSA testing on their male patients or do the testing and then ignore the results. The latter is what happened to me. My PSA was rising for over 7 years and my local primary care physician ignored the fact that it doubled twice, with an increasing velocity. I went every year for my physical and this "doctor" never once said anything about my rise in PSA (lesson learned, never trust any doctor, you must validate all results on your own). The only reason I found that I had prostate cancer was when a friend in the medical field reviewed my records and told me that I most likely had a serious issue with my prostate. Fortunately, I immediately went to Mayo-Rochester and they were absolutely amazing. Within three weeks, I had confirmation of cancer and was scheduled for a radical prostatectomy to be performed 6 weeks later (minimum time after biopsy).

Bottom line, it is vitally important to understand all your medical reports and to utilize a center of excellence for any issues discovered.

Best of luck to all that are dealing with prostate cancer!!

I was treated with proton beam radiation for prostate cancer in 2021. There was no indication of anything wrong with the DRE and my PSA was like 4.3. My PSA actually went down to 4.0 on one test before treatment. The whole PSA test leaves a lot of leeway for error. I also have gotten different lab results depending who did the test. One lab shows me at .2 and the other comes back at .14 and this is constant over multiple tests.

They need a better test and am surprised that the 4K score is not used for monitoring
I do my PSA now every six months and as long as it does not change I am happy. Not sure what I would do if it starts going up as I would rather die a slow death than take Lupron again.

My GP ordered a PSA test every year with my annual physical and I was in the 2.3 to 2.9 range. Thank goodness my female endocrinologist ordered my last one and she ordered the full one. A good PSA test should be a PSA, PSA Free, and a PSA Free %. My PSA Free % was low which clued me in that something was not right. I went to Mayo Phoenix who did an MRI and found a 7mm lesion in my 120-gram prostate (yes, I know it is big). They then did a biopsy and then a PSMA Pet scan that showed it had not spread outside the prostate. Glad I caught it early. When I asked my GP (who I fired) why he only ordered a plain PSA he said it was "his standard protocol". I told him his standard protocol was not good enough and I did not trust him to treat me. He also had told me to get the covid vaccine as I would not get covid, spread covid and kill granny, not get hospitalized from covid and not die from covid and by now everyone knows that was a lie.

Mike It is important to get a doctor who is in a large, well respected, peer review group ( affiliated with medical school, Mayo, Scripts etc) This business of solo practice doctors, no peer review, is high risk for us. I had wonderful , likeable sole practitioners when I lived in Phoenix and I thought the world of them but the care that I am presently getting at UCLA is far superior to my prior experience. I learned this lesson a bit late in life and I and they should have caught my cancer sooner. I felt fine and saw no reason to make a change and I made some fundamental mistakes!

I was told to go to the same lab for PSA tests because different labs may use different ways to analyze/produce the results.