Time for some good news

Posted by peterj116 @peterj116, Nov 5, 2024

Just offering a bit of hope for others.
I've just seen the surgeon 6 weeks post-prostatectomy.

All clear. The cancer was contained completely within the prostate & he actually used the word "cured".

Now it's just PSA tests to keep an eye on things.
He was a bit annoyed that I *still* can't do Kegels, but I have another physio visit on Friday.

I can also ignore all the scary advice about keeping away from coffee, fruit juice, spicy foods etc.
He said if it didn't irritate my bladder before, it won't irritate it now.

Yippee.
Anyone got any idiot-proof Kegel instructions?

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

That’s a really good question, I believe they watch for PSA increases then do PET scan or similar if indicated. Seems like they should do a PET scan every so often regardless, but not sure if that is standard protocol or not. Here’s to negligible PSA levels.

REPLY

Beware of a doctor using the word "cured". My doctors said they got it all after my prostatectomy in 2008 and said I wouldn't need any other treatment. In 2019 my cancer came back in the prostate bed and required hormone therapy plus 36 radiation treatments. Still not cured today and apparently it has metastasized somewhere. PSA still increasing and 4 PET scans hasn't located anything yet.
Sorry to step on your balloon but nothing is certain in this sport.

REPLY

10.5 yrs post RP no adt or radiation
Gleason 3+4
Psa < .01 For 3 years then slow rise Psma at ucla showed nothing at psa of 6 years post RP .59
Psa rose to 3.2 at 8 yrs post RP
Psma showed 3 pelvic lymph nodes
5 SBRT treatments
Resolved the lymph notes dropping psa to .6
At 10 yrs post RP psa rose to .8
Psma showed one small new lymph node which ucla radiation oncology said was too small to treat
Started ADT with Orgovyx and xtandi
Within 5 months PSA is < .01
Oncology said depending on next labs will stop adt at approx 8 months of therapy and follow closely for any rise in psa
Body seems
To be adapting well to adt
Back to pickleball and gym
2-3 mile dog walks daily
Apetite has been down. First ski trip of season planned for mid December. Emotional turmoil is now minimal.
I do believe being treated at major
Medical center is crucial for best outcome

REPLY
@mammoth3414

10.5 yrs post RP no adt or radiation
Gleason 3+4
Psa < .01 For 3 years then slow rise Psma at ucla showed nothing at psa of 6 years post RP .59
Psa rose to 3.2 at 8 yrs post RP
Psma showed 3 pelvic lymph nodes
5 SBRT treatments
Resolved the lymph notes dropping psa to .6
At 10 yrs post RP psa rose to .8
Psma showed one small new lymph node which ucla radiation oncology said was too small to treat
Started ADT with Orgovyx and xtandi
Within 5 months PSA is < .01
Oncology said depending on next labs will stop adt at approx 8 months of therapy and follow closely for any rise in psa
Body seems
To be adapting well to adt
Back to pickleball and gym
2-3 mile dog walks daily
Apetite has been down. First ski trip of season planned for mid December. Emotional turmoil is now minimal.
I do believe being treated at major
Medical center is crucial for best outcome

Jump to this post

Wow. That's quite the long journey. Sounds like your medical team is onto it.

REPLY

Undetectable uPSA following RP, persistent PSA and salvage treatment.

RP Aug 2022 age 72; postop path G 9 w/ EPE; persistent PSA .19; salvage radiation w/ 4 mos ADT Feb - June 2023

6 quarterly uPSA tests Nov 2023 - Feb 2025 < .02

Very pleased. Wishing good results and health to all.

REPLY
@michaelcharles

Undetectable uPSA following RP, persistent PSA and salvage treatment.

RP Aug 2022 age 72; postop path G 9 w/ EPE; persistent PSA .19; salvage radiation w/ 4 mos ADT Feb - June 2023

6 quarterly uPSA tests Nov 2023 - Feb 2025 < .02

Very pleased. Wishing good results and health to all.

Jump to this post

Congrats, Michael - that’s the kind of news we like to hear!
Phil

REPLY

Keagles
I read somewhere, can’t seem to find where it was but it was explained this way.
1. Contract the muscles like your trying to keep from peeing.
2. Contract the muscles like your trying to make your penis shorter.
I personally use an app that times and counts your contraction, 10 long and 5 short, 3 times a day.
I had my RRP in 2017 and have been fighting incontinence ever since.
I have been on this regiment about a month and it seems to be improving.
Good Luck

REPLY

That's great! You can enjoy getting on with your life and put your PC worries on the way back burner. Glad to hear it all went so well.

REPLY

I think caution is required in believing you are "cured." You may very well be, but vigilant monitoring of you PSA is essential. I was told they got all my G9 cancer too - clear margins & all. My reoccurance happened in 3 months, doubling every 2.7 months. Post surgery I was a T3aN0M0. 3 months later, I'm a T4N1M0. I'm now on Eligard & Zytiga and I start 45 sessions of IMRT next month. The problem is that cancer can micromatastise. Early on these small matastisis are not detected on a PSMA PET scan. I'm just saying, move on with your cancer behind you, but keep an eye on your PSA!

REPLY
Please sign in or register to post a reply.