1. < Prostate Cancer

Just found out I have prostate cancer...

Posted by jeb0505 @jeb0505, Sep 12, 2023

I'm 51, and for the past 2 years, i've been getting my PSA levels checked about every 6 months. In December 2021, my PSA numbers were 'elevated' so the doc took notice (i tested at 4.7, the doc said it should be around 3.5). So i tested again in Feb, 2022 and the number had dropped to 4.3. Great news, i thought, so we tested again in July, 2022, and the level was a calming 3.6. Next test, in December 2022, was 4.1... then, out of nowhere (June, 2023), i found myself at 6.6 and have since been more and more concerned that this might be cancer. Prostate exam suggested that it was possible, followed by an ultrasound that was 'inconclusive'... followed by one of the most unpleasant experiences of my 51 years... the biopsy (the recovery was worse than the procedure by far).

I got my results last week, showing adenocarcinoma in the right lateral base (60%) and the right lateral mid (1%) both having a gleason score of 3+3=6.

Though my results are that i am in a Gleason grade 1, which i have learned is the most favorable, it's still VERY concerning for me... Especially considering i'm barely into my 50's.

There is so much information on the internet, not all of it great, so i've been trying my best to get accurate information from reliable sources, which is what brought me to the Mayo.

I've decided to do nothing for now (Watchful waiting/Active Surveillance; getting PSA tests every 3 months)... I'm curious if others would agree with this approach.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

kjacko | @kjacko | Oct 6, 2023
In reply to @pamperme "Did you get an MRI with contrast. This allows them to target possible bad areas on..." + (show)
@pamperme

Did you get an MRI with contrast. This allows them to target possible bad areas on the biopsies. If the MRI had a low pirad I would feel better about watching.
I had a pirad of 5 which indicated it was very likely I had significant PC. The biopsy showed 3/4 and I had the RP.
As far as determining whether to have radiation or radical prostatectomy I can not answer because it is personal choice. I have erectile dysfunction and incontinence issues but I had issues with pelvic pain prior to surgery. My goal currently is to try to manage the pelvic pain to a manageable level, it appears to be pudendal neuralgia. The pain is way beyond my tolerance level at times. I can manage my urinary frequency and stress incontinence with protection which I can live with if I can get the pelvic pain down which is stopping me from doing things with my grandchildren.

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Health and happiness🙏🏻

REPLY
jc76 | @jc76 | Oct 6, 2023
In reply to @bens1 "Jeb0505: you might want to use your biopsy material for a decipher test. At the minimum,..." + (show)
@bens1

Jeb0505: you might want to use your biopsy material for a decipher test. At the minimum, it will give you a back up opinion that is not based on an image. It will let you know, based on its comparison, to similar biopsies, the aggressiveness level of your cancer, and it will suggest how many modes of treatment to consider. Doctors do use this test and based on this test they may reevaluate what treatments they would suggest for you.

My mridian 5 hypo-fractional treatments ended in February. My worst Gleason was 3+4. I felt that everybody was physically different, such that growth could not be determined by doctors or by Testing in Ways that would give me an accurate determination as to how long it would take for my cancer to grow outside of the Prostate, if it ever did. I was not willing to take the chance that it grew out of the Prostate, where additional treatments could possibly and dramatically change my quality of life.

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bens1: Jeb0505, I completely agree with getting Decipher test. They use the biopsies already taken. My original diagnosis was intermediate and Decipher came back low risk of metastasizing. The only thing it changed in treatment was that hormone treatments would not be a recommended or needed treatment in addition to radiation treatment.

I think all the test you can get to get the most accurate diagnosis is worth it and will help with treatment plan decisions.

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seasuite | @seasuite | Oct 6, 2023

Who knows, I'm 71 and may have had 3=3=6 when I was in my 50s, now I'm 4+3=7 in one core, and they judge by the worst core reading. PSA is very unreliable. Mine has been around 4-5 for many years and when my first MRI showed PI Rads 5, I thought it was surely an error until the second MRI with contrast was similar.

Great advice above: active surveillance, Decipher Grid, join forums like this one and pcf.org to monitor new treatments; read studies and look for treatment that minimize side effects and maximize efficacies.

I'd look at the finding as 'knowledge is power'.

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