Surviving prostate cancer

Posted by northoftheborder @northoftheborder, Jun 1 5:37pm

It's 1 June, 2025. If you're reading this, you're still here. Congratulations! 🎉

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@northoftheborder

That means your testosterone is low, not necessarily your PSA, but I very much hope the encouraging test results continue for both of us (mine will be the end of this month).

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You are correct, I know when PSA goes up usually it’s because the testosterone is going up too. If PSA stays low and cancer comes back regardless: then I ve developed castrate resistance. So that’s why I consume white button mushrooms daily- could be called VOODOO . , but any port in a storm.

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@ecurb

You are correct, I know when PSA goes up usually it’s because the testosterone is going up too. If PSA stays low and cancer comes back regardless: then I ve developed castrate resistance. So that’s why I consume white button mushrooms daily- could be called VOODOO . , but any port in a storm.

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I take Apalutamide with my Orgovyx for the same reason. 😉

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@graybeard46

I’ll try but at 78 I have no time to waste

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There are mechanical aids as well. I haven't tried them, but others in the forum have reported success.

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I plan to have an implant this fall, hoping it works and feels natural, tx

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I have perused comments in this discussion and thought I'd reach out for thoughts on the decision of prostatectomy vs radiation therapy. Thank you in advance for your thoughts.
I am 70 years old in good physical condition (no heart, metabolic or obesity issues). Biopsy showed 5 out of 13 specimens positive ranging as below:
all on one side
Group 1 to Group 4
Gleason 3 + 3 to (just one) 4+4
one with "ductal features"
I believe from a couple of opinions (top notch institutions)
that mine is fairly aggressive and needs treatment not surveillance.
Except for one surgeon who was adamant that his open surgery would be the best option I have heard that I could rationally choose either radiation or surgery as treatment and I am in that the process now of determining best road forward.
I initially leaned toward surgery ("get it out," benefit of pathological report on the prostate cancer, no long term treatment as with radiation and ADT) but after a recent opinion from a surgeon the thoughts of potentially months of urinary incontinence and much larger chance of ED issues has me rethinking this.
On the other hand weeks to months of radiation treatment and ADT along with the side effects of that and 24-36 months of no/low testosterone and no ability for sex, fatigue, osteoporosis, etc. have me likewise hesitant.
My guess is there is no "right" answer in my case but would very much appreciate feedback from personal experience. Thank you all.

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@jt14

I have perused comments in this discussion and thought I'd reach out for thoughts on the decision of prostatectomy vs radiation therapy. Thank you in advance for your thoughts.
I am 70 years old in good physical condition (no heart, metabolic or obesity issues). Biopsy showed 5 out of 13 specimens positive ranging as below:
all on one side
Group 1 to Group 4
Gleason 3 + 3 to (just one) 4+4
one with "ductal features"
I believe from a couple of opinions (top notch institutions)
that mine is fairly aggressive and needs treatment not surveillance.
Except for one surgeon who was adamant that his open surgery would be the best option I have heard that I could rationally choose either radiation or surgery as treatment and I am in that the process now of determining best road forward.
I initially leaned toward surgery ("get it out," benefit of pathological report on the prostate cancer, no long term treatment as with radiation and ADT) but after a recent opinion from a surgeon the thoughts of potentially months of urinary incontinence and much larger chance of ED issues has me rethinking this.
On the other hand weeks to months of radiation treatment and ADT along with the side effects of that and 24-36 months of no/low testosterone and no ability for sex, fatigue, osteoporosis, etc. have me likewise hesitant.
My guess is there is no "right" answer in my case but would very much appreciate feedback from personal experience. Thank you all.

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Gleason 8 is aggressive, so you might end up on ADT anyway just to be safe. Many people have few to no side effects from radiation, and there's usually no pain or recovery time (of course, you can get unlucky, as I did). And the overall survival rate between prostatectomy and radiation are the same.

If you do choose surgery, try very hard to get the nerve-sparing kind. Not every facility can do it, but it could make a big difference for ED and incontinence.

Best of luck, whatever you choose!

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@northoftheborder

Gleason 8 is aggressive, so you might end up on ADT anyway just to be safe. Many people have few to no side effects from radiation, and there's usually no pain or recovery time (of course, you can get unlucky, as I did). And the overall survival rate between prostatectomy and radiation are the same.

If you do choose surgery, try very hard to get the nerve-sparing kind. Not every facility can do it, but it could make a big difference for ED and incontinence.

Best of luck, whatever you choose!

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I will most likely undergo adjuvant/salvage radiation by the end of the year. Just had prostatectomy on 5/22.
I would expect the MO/RO recommend 2 years of ADT for my Gleason 9. Not looking forward to that but it’s better than death.

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@jt14

I have perused comments in this discussion and thought I'd reach out for thoughts on the decision of prostatectomy vs radiation therapy. Thank you in advance for your thoughts.
I am 70 years old in good physical condition (no heart, metabolic or obesity issues). Biopsy showed 5 out of 13 specimens positive ranging as below:
all on one side
Group 1 to Group 4
Gleason 3 + 3 to (just one) 4+4
one with "ductal features"
I believe from a couple of opinions (top notch institutions)
that mine is fairly aggressive and needs treatment not surveillance.
Except for one surgeon who was adamant that his open surgery would be the best option I have heard that I could rationally choose either radiation or surgery as treatment and I am in that the process now of determining best road forward.
I initially leaned toward surgery ("get it out," benefit of pathological report on the prostate cancer, no long term treatment as with radiation and ADT) but after a recent opinion from a surgeon the thoughts of potentially months of urinary incontinence and much larger chance of ED issues has me rethinking this.
On the other hand weeks to months of radiation treatment and ADT along with the side effects of that and 24-36 months of no/low testosterone and no ability for sex, fatigue, osteoporosis, etc. have me likewise hesitant.
My guess is there is no "right" answer in my case but would very much appreciate feedback from personal experience. Thank you all.

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Oh man…welcome to the most difficult decision you will ever have to make - with no backsies!
First of all there are no wrong decisions - outcomes for survival are the same. Both treatments have side effects so basically, pick your poison - as distasteful as that sounds.
At age 70 surgery is certainly a viable option but you better be sure you select an excellent surgeon - open surgery in these times seems a bit medieval but I am not a surgeon so perhaps there are reasons - but THAT is very invasive and a longer recovery than a robotic procedure.
OTOH, there are many options with radiation and not all of them take months - some just about 2 weeks.
However, with G8 you’d probably be placed on ADT for 6-12 months - longer if your RO feels the need.
I know I probably have not helped you much but after living in this PCa world for over 6 yrs (surgery and then SRT with ADT) I’ve come to realize that even though ALL OF IT sucks you do manage to get through whatever brilliant decision you think you’ve made; and once you’ve made it, embrace it, put your blinders on and charge forward…NEVER, EVER look back!! Best,
Phil

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@heavyphil

Oh man…welcome to the most difficult decision you will ever have to make - with no backsies!
First of all there are no wrong decisions - outcomes for survival are the same. Both treatments have side effects so basically, pick your poison - as distasteful as that sounds.
At age 70 surgery is certainly a viable option but you better be sure you select an excellent surgeon - open surgery in these times seems a bit medieval but I am not a surgeon so perhaps there are reasons - but THAT is very invasive and a longer recovery than a robotic procedure.
OTOH, there are many options with radiation and not all of them take months - some just about 2 weeks.
However, with G8 you’d probably be placed on ADT for 6-12 months - longer if your RO feels the need.
I know I probably have not helped you much but after living in this PCa world for over 6 yrs (surgery and then SRT with ADT) I’ve come to realize that even though ALL OF IT sucks you do manage to get through whatever brilliant decision you think you’ve made; and once you’ve made it, embrace it, put your blinders on and charge forward…NEVER, EVER look back!! Best,
Phil

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❝NEVER, EVER look back!!❞

Yep, you can't drive with your eyes locked on the rearview mirror.

Maybe if I hadn't been diagnosed with metastatic PCa and hospitalised in 2021, I would have died in a midair collision in my small plane, or fallen off a ladder, or who knows what else.

You have to make the most of the timeline you're on, because it's impossible to know what the others would really have been like. As they joke about emergencies in aviation, "keep flying the plane until all the pieces stop moving." 😉

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@jt14

I have perused comments in this discussion and thought I'd reach out for thoughts on the decision of prostatectomy vs radiation therapy. Thank you in advance for your thoughts.
I am 70 years old in good physical condition (no heart, metabolic or obesity issues). Biopsy showed 5 out of 13 specimens positive ranging as below:
all on one side
Group 1 to Group 4
Gleason 3 + 3 to (just one) 4+4
one with "ductal features"
I believe from a couple of opinions (top notch institutions)
that mine is fairly aggressive and needs treatment not surveillance.
Except for one surgeon who was adamant that his open surgery would be the best option I have heard that I could rationally choose either radiation or surgery as treatment and I am in that the process now of determining best road forward.
I initially leaned toward surgery ("get it out," benefit of pathological report on the prostate cancer, no long term treatment as with radiation and ADT) but after a recent opinion from a surgeon the thoughts of potentially months of urinary incontinence and much larger chance of ED issues has me rethinking this.
On the other hand weeks to months of radiation treatment and ADT along with the side effects of that and 24-36 months of no/low testosterone and no ability for sex, fatigue, osteoporosis, etc. have me likewise hesitant.
My guess is there is no "right" answer in my case but would very much appreciate feedback from personal experience. Thank you all.

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Hello - thanks for sharing. When I opened the discussion of my "options" after receiving my 3+4=7 Gleason score (3 cores negative/normal, 3 cores "6", and 6 cores 3+4 with only 10% being "4"), I asked about Active Surveillance, Radiation, and Surgery. My Urologist said that if you do radiation first, you can never have a successful radical prostatectomy afterward. "The radiation therapy turns your prostate to concrete" he said. He was directive...adamant...saying: "I'm taking your prostate". I got the clear message that I had no choice. He also said/asked: "why would you want to wait two years with active surveillance, only to give your cancer two years to advance in staging and spreading beyond your prostate?" I understood that immediately. It sounds like active surveillance is suited only for people with 3+3=6 Gleason score...the lowest you can have. So, I had my single incision DaVinci Robotic Assisted Radical Prostatectomy on 4/18/25. Lots of frustrating, exasperating post-op consequences...mostly the urinary incontinence and a complete change in bowel habits. Because I fell into the unlucky 10-20% that have "surgical margins" (he didn't get "all" of the cancer...left some behind), I need to have a discussion of having radiation anyway, to have a focus kill of the remaining tissue. Good luck, but I would stay away from radiation as your first choice option.

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