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.

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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@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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@q95oldies

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 apologize if that wasn't clear...
My PSA was 13 when I had the RP, it went down to .039 then back up to .091 which is when I started the salvage radiation treatment.

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@kujhawk1978

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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Such good advice, you must be an advocate your your personal health and understand the numbers. Before retiring from the corporate world, I was working/traveling constantly. I went to my PCP annually to get my full physical. Each year she said everything looks great, you are good to go. I simply trusted and believed what she was saying, not even looking at the actual data. After retiring, I started to look into my health and decided I wanted to improve my diet and get off the statin that I was on. I went to a cardiovascular management team and met with a family friend. She reviewed my complete file and at the end of the appointment, asked me if I was addressing my prostate problem. I asked, what prostate problem? From there, I immediately did research and got an appointment at Mayo-Rochester. In the end, Gleason Score 7 (4/3), chose Radical prostatectomy, all clear 1 year later.

The lesson to be learned from my experience, you cannot just rely on your doctor to manage your healthcare. There is a lot of incompetence, lack of caring, and human error in the medical field. As Kujhawk1978 said, its your health and you must manage it with at least 51% of control.

Also, I would recommend not taking the risk of treating prostate cancer at a local hospital. You should definitely go to a center of excellence such as Mayo-Rochester.

Have a great day,

Jim

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@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 had RALP Aug’22, with Pelvic Floor PT before AND after the surgery; I had zero incontinence. I had had rising PSA for several months previously.

Several years before, my PCP informed me that the rectal exam had been deemed “very subjective” and I was offered the choice. As it was “subjective,” I passed on it.

I would make the same choices today.

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@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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I have the same opinion about PSA tests I was told this was not needed it would become a unnecessary worry .It is barometer of our prostate, possibly warning of a coming storm . My PSA at dx was 1665 ,and this was the first time I ever had a PSA test. with ADT and abiraterone it is now .014 . with a yearly PSA test this all might been avoided

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@hammer101

Such good advice, you must be an advocate your your personal health and understand the numbers. Before retiring from the corporate world, I was working/traveling constantly. I went to my PCP annually to get my full physical. Each year she said everything looks great, you are good to go. I simply trusted and believed what she was saying, not even looking at the actual data. After retiring, I started to look into my health and decided I wanted to improve my diet and get off the statin that I was on. I went to a cardiovascular management team and met with a family friend. She reviewed my complete file and at the end of the appointment, asked me if I was addressing my prostate problem. I asked, what prostate problem? From there, I immediately did research and got an appointment at Mayo-Rochester. In the end, Gleason Score 7 (4/3), chose Radical prostatectomy, all clear 1 year later.

The lesson to be learned from my experience, you cannot just rely on your doctor to manage your healthcare. There is a lot of incompetence, lack of caring, and human error in the medical field. As Kujhawk1978 said, its your health and you must manage it with at least 51% of control.

Also, I would recommend not taking the risk of treating prostate cancer at a local hospital. You should definitely go to a center of excellence such as Mayo-Rochester.

Have a great day,

Jim

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No question each of us should learn all he can about his body. It's all we have, and without it working well, life is shorter and messier. Some guys pay more attention to their cars or computers than their body.

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@hammer101

Such good advice, you must be an advocate your your personal health and understand the numbers. Before retiring from the corporate world, I was working/traveling constantly. I went to my PCP annually to get my full physical. Each year she said everything looks great, you are good to go. I simply trusted and believed what she was saying, not even looking at the actual data. After retiring, I started to look into my health and decided I wanted to improve my diet and get off the statin that I was on. I went to a cardiovascular management team and met with a family friend. She reviewed my complete file and at the end of the appointment, asked me if I was addressing my prostate problem. I asked, what prostate problem? From there, I immediately did research and got an appointment at Mayo-Rochester. In the end, Gleason Score 7 (4/3), chose Radical prostatectomy, all clear 1 year later.

The lesson to be learned from my experience, you cannot just rely on your doctor to manage your healthcare. There is a lot of incompetence, lack of caring, and human error in the medical field. As Kujhawk1978 said, its your health and you must manage it with at least 51% of control.

Also, I would recommend not taking the risk of treating prostate cancer at a local hospital. You should definitely go to a center of excellence such as Mayo-Rochester.

Have a great day,

Jim

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If you don’t mind me asking, was your RP followed up with radiation to the prostate bed, my problem began 16-18 months after the radiation

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@sansman

If you don’t mind me asking, was your RP followed up with radiation to the prostate bed, my problem began 16-18 months after the radiation

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I was a Gleason Score 7 (4/3) and had my RP in November, 2022. All margins were negative and the nine lymph nodes that were removed had no cancer. Thus, my doctor did not believe it was necessary to radiate the prostate bed.

Please note - I don't mind sharing any detail of my situation.

Jim

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