1. < Prostate Cancer

Time for some good news

Posted by peterj116 @peterj116, Nov 5 7:39pm

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?

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rxgolfer | @rxgolfer | Nov 6 10:28pm

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
harvey44 | @harvey44 | Nov 7 8:14am

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
mammoth3414 | @mammoth3414 | Nov 7 9:34am

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
1 reply
peterj116 | @peterj116 | Nov 7 11:14am
In reply to @mammoth3414 "10.5 yrs post RP no adt or radiation Gleason 3+4 Psa < .01 For 3 years..." + (show)
@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

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

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