Show of Hands Please
This may start as a vent then a questionaire, so my apologies for being all over the place but I am still in the initial shock phase and still seeking out professional opinions.
I am a very active, in good shape, 52 year old who just found out last week that I have stage 2TC Prostate Cancer with a Gleason Score of 3+4. This is a complete shock to me as I have had chronic prostate issues (chronic prostatiits) since my early 20's, and I get a PSA every six months along with a DRE at the urologist visit.
I have had two biopises before on scares when my PSA rose from a 1.56 to a 2.37 the first time in 2012 (biopsy negative) and again in 2014 when it rose to a 3.34 (biopsy negative).
They actually sent the second samples to a DNA analysis lab that also came back green lights across the board.
I have had 15 PSA's done since then and have seen the doctor every six months as directed. I actually thought my last biopsy was in 2016 but it seems I lost track of time and just took it for granted that my doctor was on top of things.
Upon receiving my diagnosis (which was like getting told I had a flat tire by my doctor, whom then gave me a book and a stapled bunch of copies that had been copied so many times the pictures were unrecognizable, and then told that no matter what course of action I chose he'd be there for me) i asked for my records so that I could begin the process of getting second opinions. It was in these records that I found this one chart that i had never seen before that just blew me away.
I had two biopisies as mentioned before in 2012 and 2014 when my PSA went to a 3.34, but looking at my graph, my PSA since then rose steadidily form a 3.34 to 4.19 in 2016, a 5.01 in 2017, stayed around there in 2018, and then went to a 7.92 in January of 2019. My latest PSA was in 11/2019 and it shot to a 10.03.
My doc always calls me with my PSA results and after that call his recommendation was to take a round of antibiotics and wait 6 months to get another PSA. I asked him if there was some test we could do other than a PSA and a random sample biopsy and he said yes that we could do a MRI if I wanted. I said yes please and that lead to a MRI guided biopsy two weeks ago that yielded my diagnosis.
So this is the vent part, please forgive, but it is also a warning to always stay on top of your own health and get second opinions and don't always rely on your doctor to look out for your own health.
If my PSA rising from a 1.56 to a 2.37 and then to a 3.34 was alarming enough to warrant two biopsies and DNA mapping in 2012-2014, why was not the doubling and then tripling of my PSA in the following 6 years not a red flag to warrant another biopsy or MRI (which I didnt even know was an option for the prostate)? I had to actually say no to waiting and ask if there was someting else to do, or I'd still be waiting until May to get another PSA.
Ok, that was the vent part, and I guess since i don't understand it, and nobody else I show the graph to does either, I just want to say that i cannot emphasize enough that you have to stay on top of your own health and not blindly follow your doctor.
Ok, so here I am, blindsided by a diagnosis that my retired urologist (one who originally diagnosed me with chronic prostatitis in my 20's) told me I would probably never face since I was one of those guys who would get checked twice a year because of that condition and as a result if indeed I ever did get diagnosed with prostate cancer, it would be in extremely early stages and I'm guessing more options would be available? (I'm still in information gathering strage but have seen 2 urologists and one radiation oncologist so far and have a third urologist consult next week althought even the radiation guy said he would do a radical prostatectomy since I have a 4 in my Gleason score).
My question to all you guys is who here has had treatment, what were your results, what were your regrets if any, and what do you think about the options that are available?
I have talked to so many people already and they mostly agree surgeons want to operate and radiation guys want to radiate, but they all also say that the information on the quality of life afterwards (incontinence/sexual effects) are sketchy at best and a lot of them were shocked at the learning curve afterwards on things like urine flow and the different damages associated with each form of treatment, whether it be open surgery, robotic or radiation.
So if you don't mind, can each of you tell me your stage, type of treatment you chose and why and the results after (or during if you are currently in treatment).
I am trying to learn as much as I can, but am finding that the prostate is a "drama queen" as my radiation oncologist just described it, and there is just no simple answers on outcomes.
Thank you all for reading this. i am still bouncing back and forth from disbelief to anger and back again, so I apologize for being all over the place.
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