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.

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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I had robotic surgery last year, no regrets.

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Years ago I was seduced into thinking that prostate cancer was not a big deal. I recall reading many different sources that since it progresses so slowly that you would die from something else. I even read that getting a PSA test was not advised after age 70. Three years ago, at the encouragement of my wife I got a PSA test and even though it had gone from 5 to 8 I ignored it because my DRE's were always OK.

Last year after a DRE I decided to get a test, my PSA was now at 11. This caused me to get a biopsy and cancer was found, (Gleason 9). Having more tests determined that the cancer hadn't spread which has led to where I am today. On hormone therapy and just completed thirty days of radiation.

What would I have done differently? I would've ignored the idea that Prostate cancer could be ignored. I have strongly advised my 50 year old son to get tested.

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Things in the treatment of prostate cancer has changed dramatically since 2008 when I had RP done. I probably would do it differently today after a in depth study of available treatments.

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Hmm. In hindsight, maybe insist on getting my PSA tested every year, even though I was young and "low risk"?

For actual treatment, things happened too fast for me to agonise much over treatment choices. My tumour was compressing my spine so much that I was at risk of permanent paraplegia, so they rushed me into the OR, then kept me around for 3½ months.

That's easier, in a sense, because you just go with the flow. My onco team recommended Firmagon and Erleada, as well as SBRT to my spine a month after surgery and to my prostate 6 months later. Meanwhile, I was just trying to fight multiple post-surgery complications (ileus, DVT, pneumonia, etc) and move my toes a little.

I have to say, it worked. Lying in a hospital bed alone during a COVID lockdown 2 years ago was definitely my worst Christmas ever, but I did learn to walk again, I'm tolerating my treatment well, and my PSA is still undetectable. My main feeling is gratitude for getting my life back, not concern I should have picked a different prostate cancer treatment.

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I had a radical prostatectomy in 2006. PSA 5.53. Gleason 3+4 7. . I think if I had to do it over again , if I was diagnosed in 2023 , I would have opted for radiation treatment. I had way too many side effects with the radical prostatectomy. A lot of pain , ED , urinary incontinence , 5 hernias after surgery.

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@erkbiz

Years ago I was seduced into thinking that prostate cancer was not a big deal. I recall reading many different sources that since it progresses so slowly that you would die from something else. I even read that getting a PSA test was not advised after age 70. Three years ago, at the encouragement of my wife I got a PSA test and even though it had gone from 5 to 8 I ignored it because my DRE's were always OK.

Last year after a DRE I decided to get a test, my PSA was now at 11. This caused me to get a biopsy and cancer was found, (Gleason 9). Having more tests determined that the cancer hadn't spread which has led to where I am today. On hormone therapy and just completed thirty days of radiation.

What would I have done differently? I would've ignored the idea that Prostate cancer could be ignored. I have strongly advised my 50 year old son to get tested.

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Good advice for your son to start PSA screening at 50. I've given the same advice to my brothers.

It's tragic that some fools with spreadsheets convinced various health ministries and organizations that standard PSA screening had no statistical benefit. The incidence of prostate cancer that had already spread at first diagnosis has shot way up since PSA screening got rolled back.
https://pubmed.ncbi.nlm.nih.gov/26087383/

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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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@erkbiz

Years ago I was seduced into thinking that prostate cancer was not a big deal. I recall reading many different sources that since it progresses so slowly that you would die from something else. I even read that getting a PSA test was not advised after age 70. Three years ago, at the encouragement of my wife I got a PSA test and even though it had gone from 5 to 8 I ignored it because my DRE's were always OK.

Last year after a DRE I decided to get a test, my PSA was now at 11. This caused me to get a biopsy and cancer was found, (Gleason 9). Having more tests determined that the cancer hadn't spread which has led to where I am today. On hormone therapy and just completed thirty days of radiation.

What would I have done differently? I would've ignored the idea that Prostate cancer could be ignored. I have strongly advised my 50 year old son to get tested.

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You are so right about the importance of testing. My friend is starting the same treatment that you describe with the hormone therapy (first injection this Friday) and then, the thirty days radiation. Would you be willing to share your experience...side effects etc. with this so far? It would be so much appreciated, as apprehension is sometimes worse than reality. Certainly wishing you the best on your journey.

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@fisch

You are so right about the importance of testing. My friend is starting the same treatment that you describe with the hormone therapy (first injection this Friday) and then, the thirty days radiation. Would you be willing to share your experience...side effects etc. with this so far? It would be so much appreciated, as apprehension is sometimes worse than reality. Certainly wishing you the best on your journey.

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Take a look at the post titled, "Eligard and radiation", if you are seekingmore information let me know and I will try to share more dertails

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