So, I'm 17 years into my journey. open surgery followed by SRT two years later that (almost) got everything.
Looking back, I figure my doubling time at about 3 years so my radiation oncologist was able to declare me cured years before I wasn't. My GP referred me back to a urologist when my PSA hit 0.4 and there's been a steady climb into the 1.2 range. The latest PSA rise after six months was only 0.02 when the trend suggests it should have been more along the line of 0.30 or 0.40. I take that as a win.
As an aside, my youngest brother has decided to complicate his post prostate cancer journey by adding bladder cancer to the mix. Scarring from the first has not helped his treatment for the second.
dx 54
PSA 8.7 4/6 cores +
G 3+4=7
RP 4/29/09
- nodes, + vesicles, + margin
G 3+4=7 tert 5 T3b
PSA 3/11=0.2 SRT 05/09/2011 - 07/01/11
PSA < .1 for 10 years
PSA > .2 2021 doubling every 2.6 years.
Referred back to urologist when PSA hit .4
Negative PSMA Pet Scan 2024
PSA July 2025 0.90
PSA Jan 2026 1.24
PSA July 2026 1.26
That is a pretty good run, your brother seems to have his hands full though.
You sound like you are comfortable with current situation which is understandable given that if the situation was bleak, you would have been in trouble years ago.
It seems to me that you might want to be seeing an oncologist who specializes in prostate cancer that might take a greater interest in your monitoring and possible treatments in future. Current thinking is to do MRI’s also along with PET PSMA scans looking for changes that do not show up with PSMA tracer. Just a thought…
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023, 2024, 2025
You sound like you are comfortable with current situation which is understandable given that if the situation was bleak, you would have been in trouble years ago.
It seems to me that you might want to be seeing an oncologist who specializes in prostate cancer that might take a greater interest in your monitoring and possible treatments in future. Current thinking is to do MRI’s also along with PET PSMA scans looking for changes that do not show up with PSMA tracer. Just a thought…
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023, 2024, 2025
STW, 17 years is a nice run. I also have been at it for 17 years, though started out at a Gleason 8. Have done it all, but chemo. Looks like you have many more years, and options if needed, ahead of you. Best wishes… Bill
Age 82 Gleason 8
Surgery ‘09
Move case to MSK ‘11
July '22 PET F-18; one met near rectum. SBRT.
Jan ‘23 PSA 11.4
Feb ‘23 PET Gallium. Clean.
April ‘23. PSA 18.6. New round ADT
Nov ‘23 PSA .19. Pause
June ‘24 PSA 10.3 . XTANDI mono.
March ‘25 Pause
August ‘25 PSA 16.1 XTANDI mono.
May ‘26 PSA 2.53. PSMA PET — avid nodes around the rectum. Added ADT to XTANDI.
Bone & organs still clean.
Age 82 Gleason 8
Surgery ‘09
Move case to MSK ‘11
July '22 PET F-18; one met near rectum. SBRT.
Jan ‘23 PSA 11.4
Feb ‘23 PET Gallium. Clean.
April ‘23. PSA 18.6. New round ADT
Nov ‘23 PSA .19. Pause
June ‘24 PSA 10.3 . XTANDI mono.
March ‘25 Pause
August ‘25 PSA 16.1 XTANDI mono.
May ‘26 PSA 2.53. PSMA PET — avid nodes around the rectum. Added ADT to XTANDI.
Bone & organs still clean.
STW and Newspaper Lover both at it for 17 years! Great job gentlemen. I hope both of you have at least 17 more
I'm at 11 years, which I find somewhat surprising. I will be quite grateful for another 6 good years, and hopefully well beyond that.
Part I 2015, Age 54. Age now 66
PSA: 20.8 Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase
Part II 2019
Lupron/Xtandi, PSA: <0.01 (2019 -2025)
Lupron/Xtandi, PSA <0.1 (2025 - current) Medicare changed me to LabCorp and standard PSA tests
2021: Reclast
2023: Prolia
I'm at 11 years, which I find somewhat surprising. I will be quite grateful for another 6 good years, and hopefully well beyond that.
Part I 2015, Age 54. Age now 66
PSA: 20.8 Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase
Part II 2019
Lupron/Xtandi, PSA: <0.01 (2019 -2025)
Lupron/Xtandi, PSA <0.1 (2025 - current) Medicare changed me to LabCorp and standard PSA tests
2021: Reclast
2023: Prolia
I have to agree 17 years is fantastic and that really inspires me.
Sounds like you are riding the waves, and faring well.
Are you also consulting with an oncologist?
I feel it's worth your consideration to make an appointment with an oncologist, in addition to the urologist you are seeing.
A second set of eyes on one's case is never a bad idea ...
An oncologist may also have a few suggestions to "keep the wolves at bay" ...
Readers here, especially newly-diagnosed readers, really gain hope from fellows like you, who have been faring well for many years, since diagnosis.
All my best to you ~
CYCLONE ~ # Iowa State University
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, & currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & ZYTIGA & RADIATION
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.10 - Undetectable Range - Treatments Ongoing
Are you also consulting with an oncologist?
I feel it's worth your consideration to make an appointment with an oncologist, in addition to the urologist you are seeing.
A second set of eyes on one's case is never a bad idea ...
An oncologist may also have a few suggestions to "keep the wolves at bay" ...
Readers here, especially newly-diagnosed readers, really gain hope from fellows like you, who have been faring well for many years, since diagnosis.
All my best to you ~
CYCLONE ~ # Iowa State University
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, & currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & ZYTIGA & RADIATION
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.10 - Undetectable Range - Treatments Ongoing