Not that you would want to but if you could do it all over again?

Posted by ozelli @ozelli, Nov 12, 2023

What would you do differently? I am assuming only prostate-contained cancers here.

Treat? Not treat? Chose different treatment?

I treated with radiation and was pretty satisfied.

Nothing is off-limits.

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

Profile picture for john6stodolka @john6stodolka

I have no understanding of the thinking process behind PSA tests not being needed. After an annual physical, my PSA went from 3.0 to 12.6 in one year. Flags came out all over the place. Tests (MRI's, Pet Scan, blood, 14 biopsies, etc.) then showed Gleason 9, aggressive, advanced, Grade 5, stage 4 prostate cancer. If I had not had the PSA tests done, I would not have had treatment and the cancer would have spread to God knows where. Yes, I had radiation and hormonal treatments that brought the PSA down to undetectable. Now, it's a PSA check every three months. No, I probably would not be here or would have a very different story to tell if I hadn't checked the PSA during a standard annual physical. I cannot understand why anyone would not take a simple blood test to follow periodic PSA results.

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john6stodolka, Some years ago they were moving away from PSA testing. My PCP at Mayo did not agree with that and kept doing PSA test on me. I had a normal PSA (3.75) but was steadily rising. We thought it could be long distant bike riding but he did not want to take a chance on that as cause.

Urologist ordered MRI, then biopsies, then all those test you get. So I did have prostrate cancer with a normal PSA level. But without the monitoring of the PSA would never had address the cause of a rising PSA. The follow up after treatments is monitoring PSA.

The prostrate and or prostate cancer is the only thing making PSA. So if it rises and keeps rising it is either prostrate irritation or cancer. PSA in my PCP words is the gold way of monitoring prostrate.

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FWIW, my PSA was 67.9 when they detected the metastasised tumour at T3 on my spine (I hadn't been diagnosed with cancer up to then), and apparently, that wasn't awful — they see numbers well into the hundreds for advanced prostate cancer. The PSA came down to 11.6 a couple of weeks after my first (double) Firmagon injection, and has remained below 0.1 for the two years since (also taking Erleada).

All of that is by means of saying maybe don't read too much into the decimals. It might be like worrying about baking a cake at 349.5 F instead of 350.0 F.

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Profile picture for florida11 @florida11

I would find a way to go to the very best medical facilities in the country. My biggest regret is using my local urologists that was not up on current treatments. I wish I had gone to Mayo first. My local primary care provider was also not helpful, as he chose not to do rectal exams because my PSA was less than 2 even though I had a family history of PCA. When I finally found out from blood in the semen, it was aggressive.

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Same here

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Profile picture for web265 @web265

Interesting discussion idea. For myself, I might have held off a little on the Salvage Radiation.
I had my surgery in Sept of 21

Then these blood tests...
01/26/22 PSA Result of 0.039
04/26/22 PSA Result of 0.091

I think I should have had another blood test at the end of July 22 to confirm the PSA rise and get a rate as well before agreeing to the Salvage Radiation. That treatment didn't start till 6/15/22 anyway, what would another month have mattered?

I'm not a spilled milk kind of person though, and for now, it's all in the rear view so....happy with that.

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You had the prostate removed when you had a .091 PSA? Isn't that in the normal region? Mine was like 5.7.

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No.

I'm 7.5 months post RP @ age 74. Followed PSAs since age 49, as father died from PC. Rise started 2020. Once it reached 6 in June 2022, I knew. But I delayed for 5 months to complete something frivolous but important to me.

Post op path was 4+3, seminal vesical invasion, negative nodes, margins, bladder neck and no extension.

Now I have the trifecta: undetectable PSA x 3, return of bladder continence, and adequate sexual function with Viagra. I attribute all that mostly to my excellent surgeon at Kaiser, and partly to my very good physical condition (no other medical problems, 90' of exercise daily.)

If i do get a "biochemical recurrence", I will worry that the 5 month delay let some cells thru. But for now, no regrets.

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I have no understanding of the thinking process behind PSA tests not being needed. After an annual physical, my PSA went from 3.0 to 12.6 in one year. Flags came out all over the place. Tests (MRI's, Pet Scan, blood, 14 biopsies, etc.) then showed Gleason 9, aggressive, advanced, Grade 5, stage 4 prostate cancer. If I had not had the PSA tests done, I would not have had treatment and the cancer would have spread to God knows where. Yes, I had radiation and hormonal treatments that brought the PSA down to undetectable. Now, it's a PSA check every three months. No, I probably would not be here or would have a very different story to tell if I hadn't checked the PSA during a standard annual physical. I cannot understand why anyone would not take a simple blood test to follow periodic PSA results.

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When I had BCR after surgery, my urologist and radiologist said I should do SRT to the prostate bed. I had done some homework and data was emerging about location of recurrence in high grade PCa with clinical history such as mine, PSADT, GS, time to BCR...

That data indicated the spread was more often than not in the PLNs and the radiation treatment field should be extended to include the PLN system and six months ADT.

My urologist and radiologist said no, there wasn't long term data to support that...! I acquiesced, 90 days after the SRT to the prostate bed only, my radiologist turned to me and said "Kevin, your PSA is .7, it was .3. SRT failed..."

From that point on, I vowed that any treatment decision would be made jointly but I would have the 51% say. So, when my urologist and a 2nd one said monotherapy, ADT, for lifetime, I said no, triplet therapy. That brought 4-1/2 years off treatment. This go around, same, doublet therapy for a defined period, if clinical data supports, stop, actively monitor.

Kevin

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Profile picture for florida11 @florida11

I would find a way to go to the very best medical facilities in the country. My biggest regret is using my local urologists that was not up on current treatments. I wish I had gone to Mayo first. My local primary care provider was also not helpful, as he chose not to do rectal exams because my PSA was less than 2 even though I had a family history of PCA. When I finally found out from blood in the semen, it was aggressive.

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Same here. My local urologist was dangerously wrong even about the basics. Glad I went elsewhere.

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Profile picture for florida11 @florida11

I would find a way to go to the very best medical facilities in the country. My biggest regret is using my local urologists that was not up on current treatments. I wish I had gone to Mayo first. My local primary care provider was also not helpful, as he chose not to do rectal exams because my PSA was less than 2 even though I had a family history of PCA. When I finally found out from blood in the semen, it was aggressive.

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I fired my idiot PCP. They really don't have a clue and just see you for the $$$$. Breathe in, breathe out, that will be $200.

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I try to avoid woulda, coulda, shoulda scenarios.

I opted for RARP when I was diagnosed at Gleason 8. Post surgery, that was downgraded to 7.

I can't change anything at this point and it seems a waste of time pontificating otherwise to me....

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