Although I frequently read this forum, it's not really my thing to post here. But I remember when I was first diagnosed, I was grateful for all the stories and information everyone here provided. I thank you all for that. I also think that some others who are beginning their journey may find my story helpful.
At age 48, my PSA test came back at 114 and the subsequent biopsy and CT scan showed a large tumour in all areas of my prostate. Based on all the imaging and tests, it was initially classified as cT3 cN1, cM1 (Gleason score 4+5=9). It was metastatic and they saw a clear sclerotic lesion on my pubic bone -- likely the cancer has spread there (but possibly it was a benign bone "island"). He described it as aggressive and very high risk.
My urologist said normally you treat with hormones, radiation and chemo. But given my age and (otherwise) good health, it might make sense to do surgery -- a radical prostatectomy. Normally they only do that with cancer that hasn't spread because it usually cures those men. The benefit for me would be to remove the original source of the cancer cells (de-bulking the cancer), which might simplify later treatment. He said he wasn't the guy to do it, so he referred me to a surgeon who he described as "one of the best".
The first thing I remember my new doctor saying was my cancer was "likely incurable". He needed more tests and he wanted to review my case with the other cancer specialists at the hospital. The MRI came back with no evidence of seminal vesicle or neurovascular bundle invasion. The chest scan and bone scans were negative for metastatic disease. But, what about the lesion on the pubic bone? They decided a biopsy was not recommended because it'd likely break the bone.
(I should mention that in the first two months, I asked for frequent PSA tests -- like every week or two. What I saw was my PSA bouncing up and down +/- 25%. 114 -> 100 -> 142 -> 96 -> 82 -> 90. This makes me question relying on a single PSA test every 3 months as some people do. )
He suggested a plan: Six months of ADT to slow to spread of the cancer. If the bone lesion shrinks, then we will know that it's cancer. If the cancer was fairly locally contained, he'd be comfortable doing the surgery. Otherwise, it was a judgement call. He said, based on his own surgical experience and what he knew at the time, there was maybe a 10-15% chance the surgery would be curative. Either way, it might help down the road even if the cancer escaped the prostate.
So, I started my ADT (Firmagon) and had "an average response". In the first month, my PSA went from ~100 to 3.14. After 6 months it was at ~0.45. The scans showed the tumour had shrunk some, but the bone lesion was unchanged. Not bad news, but it was not convincing for him. So he referred me to UCLA for the 68-GA PSMA-PET scan. The scan didn't detect any PSMA in the lesion. At this point, my doctor felt there was a good chance that it was just a bone island (benign) and it seems the cancer had not taken root elsewhere in my body. But again he cautioned that this was still a very aggressive, very high risk cancer. So we were on for the radical prostatectomy.
In October I had the robotic-assisted laparoscopic radical prostatectomy. The doctor reported "pT3b (involved 27.5% of the tissue with extensive extraprostatic extension and leftsided seminal vesicle invasion) prostate adenocarcinoma; Gleason 4 + 5 (based on prostate biopsy; Gleason grade could not be assigned on prostatectomy due to androgen deprivation affect); pN0 (14 lymph nodes); negative surgical margins; pre-operative PSA 115"
At 6-weeks and 10-weeks post-op, my PSA is undetectable (< 0.02). Interestingly, after removing my prostate (and the accompanying tumour), my testosterone rebounded higher than it was when I first started ADT. Not sure what that means.
I guess I was expecting that when you remove the big tumour, the PSA would be pretty undetectable, so I was pleased but not surprised. But my doctor said "I don't think you realize how good this news is". He said he wouldn't have been surprised if my PSA had measured at 20 after the surgery.
So here I am a year into this. For the first time since I received this news, I feel that this death sentence isn't necessarily set in stone. It appears that the vast majority of my cancer is gone. If I'm honest with myself, I do expect it to return. But, thanks to my very skilled and knowledgeable doctors, I am in the best of all positions to fight it when it does.
Friend with advanced Prostate cancer
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