I'm a Gleason 9 Stage 4 survivor. It's been 15 years of blessed bonus days. Just curious as to how many Gleason 9 Pca brothers are out there. Was it a great surgeon, a great radiologist oncologist, Provenge or a combo that has kept me alive?
Age 50
DRE Positive, Tumor Left Apex, Biopsy 7 out of 12 positive, Gleason 9 (5+4) both sides, Dx 2/15/10,
RRP 4/27/10. Pathology, 25% cancer, PCa in margins, lymph node, seminal vesicles, pt3bI (really stage 4) One lymph node positive
12-19-12 Lost my less than sign on my ultra-senstivie PSA test. Currently 0.01
1st Lupron Shot (45 mg) and Cassodex on January 11, 2013
IGRT and IMRT 2013
I'm still fighting 9.
Dont post a lot but always read others input.
Dont post a lot but always read others input.
Still here. 13+ years. Great RO, Provenge Pluvicto
Round1: 6/12 PSA=36
Dx 49y G9 LymphNodes T3cN3M0
IMRT
R2: Provenge
1/14 2.0 C11 bone met
Zytiga + spot RT
9/14 Chemo
2015 6mo <0
ADT Vaca
6/16 1.6
R3: C11 ->RT rib lesions + ADT
12/16 ADT Vaca PSA 0.8 6mo
12/17 PSA 4.1
R4: 2018 rib lesions
2019 ADT+Zytiga
2021 PSA doubling 30d
R5: trial Onvansertib
2022 Pluvicto PSA 0.4 down 99% 22 months
2025 PSA up to 128
Re-LuPSMA trial Pluvicto 2nd time
Round1: 6/12 PSA=36
Dx 49y G9 LymphNodes T3cN3M0
IMRT
R2: Provenge
1/14 2.0 C11 bone met
Zytiga + spot RT
9/14 Chemo
2015 6mo <0
ADT Vaca
6/16 1.6
R3: C11 ->RT rib lesions + ADT
12/16 ADT Vaca PSA 0.8 6mo
12/17 PSA 4.1
R4: 2018 rib lesions
2019 ADT+Zytiga
2021 PSA doubling 30d
R5: trial Onvansertib
2022 Pluvicto PSA 0.4 down 99% 22 months
2025 PSA up to 128
Re-LuPSMA trial Pluvicto 2nd time
Post Edited (SteelGuy) : 2/24/2026 9:26:37 PM (GMT-5)
Good to hear from you, Ray. Been awhile since our last meeting. Great to hear you are doing well.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta
I don't know whether I'm blessed or lucky. So I go with both. 8 years+ <0.01.
Dx 5/18/17
11/12 cores 2 4+4
RALP 7/27/17;3 pos nodes
psa post op 0.15 to 0.28
scan=multiple bone mets
Clev Clinic ups to G9
CClinic MO+my MO say ADT+Zytiga+Pred
lupron 11/17/17
zytiga 12/15
psa 12/28 0.03
4/4/18=<0.01
7/3=<0.01
stop Zytiga 7/16 bad liver #'s
9/11/18 restart Zytiga 1/2 dose
10/5=<0.01
10/30/18 start 3/4 dose
1/2018 through 10/2025=<0.01
Med vacation since June 2022
Dx 5/18/17
11/12 cores 2 4+4
RALP 7/27/17;3 pos nodes
psa post op 0.15 to 0.28
scan=multiple bone mets
Clev Clinic ups to G9
CClinic MO+my MO say ADT+Zytiga+Pred
lupron 11/17/17
zytiga 12/15
psa 12/28 0.03
4/4/18=<0.01
7/3=<0.01
stop Zytiga 7/16 bad liver #'s
9/11/18 restart Zytiga 1/2 dose
10/5=<0.01
10/30/18 start 3/4 dose
1/2018 through 10/2025=<0.01
Med vacation since June 2022
Those are encouraging numbers.
My original Dx was G8 but J Hopkins upgraded to G9. PCa has escaped and one lymph node was "hot" according to PSMA-PET scan. I opted for RT, but Proton RT. The max, 44 treatments. Nothing like `13 or 15 years to celebrate, but have now passed the 4 year mark. PSA now rising gradually. Not alarmingly. Just up 0.10 increase each 30-60 days. At this point that would take 18-24 months before a PSMA-PET scan would be effective to determine if it's "normal" recovery or something more sinister that is lurking about there.
Carpe diem.
Issy
Dx 12/29/21 @ 66yo PSA 4.7 (w/FINASTERIDEt real PSA is 9.4
11/15/21 Fusion MRI & Biopsy - G8 (4+4, 75%,50%,50%) Highest Grade Group 4
9 of 16 Ca/ PNI/ PSMA PET Scan--No evidence of mets, but one pelvic LN was hot. Jhopkins 2nd opinion: upgraded to G9.
Opted for Proton RT & ADT (Eligard 24mo. Zytiga added June '22 - discont Mar '23 with stroke. Quit the Eligard after 18 mo. 1st PSA undetect
My original Dx was G8 but J Hopkins upgraded to G9. PCa has escaped and one lymph node was "hot" according to PSMA-PET scan. I opted for RT, but Proton RT. The max, 44 treatments. Nothing like `13 or 15 years to celebrate, but have now passed the 4 year mark. PSA now rising gradually. Not alarmingly. Just up 0.10 increase each 30-60 days. At this point that would take 18-24 months before a PSMA-PET scan would be effective to determine if it's "normal" recovery or something more sinister that is lurking about there.
Carpe diem.
Issy
Dx 12/29/21 @ 66yo PSA 4.7 (w/FINASTERIDEt real PSA is 9.4
11/15/21 Fusion MRI & Biopsy - G8 (4+4, 75%,50%,50%) Highest Grade Group 4
9 of 16 Ca/ PNI/ PSMA PET Scan--No evidence of mets, but one pelvic LN was hot. Jhopkins 2nd opinion: upgraded to G9.
Opted for Proton RT & ADT (Eligard 24mo. Zytiga added June '22 - discont Mar '23 with stroke. Quit the Eligard after 18 mo. 1st PSA undetect
Great to see these stories
I am not a doctor, just a guy without a prostate
Dx Age 64 Nov 2014, PSA 4.3
BX 3 of 12 cores positive original pathology G6
RALP Jan 6, 2015
Post surgical pathology G7 (3+4), - ECE, - Margins, -LN, -SV
PSA @ 6 weeks 2/15, <02, remained <0.02 until 1/2017, .02, repeat 2/2017, still .02. 5/2017-.033, 8/August 2017- .033 8/17 .046, 3/2018 .060. 6/2018 .068, July 2018 - .08, 8/ 2018, .078, Start ADT+SRT.
Sept 2018 thru May 2022 –PSA = <.05
Decipher test, low risk, .37 score
My story.... tinyurl.com/45w7789x
Every day’s a bonus – Sonny3
I am not a doctor, just a guy without a prostate
Dx Age 64 Nov 2014, PSA 4.3
BX 3 of 12 cores positive original pathology G6
RALP Jan 6, 2015
Post surgical pathology G7 (3+4), - ECE, - Margins, -LN, -SV
PSA @ 6 weeks 2/15, <02, remained <0.02 until 1/2017, .02, repeat 2/2017, still .02. 5/2017-.033, 8/August 2017- .033 8/17 .046, 3/2018 .060. 6/2018 .068, July 2018 - .08, 8/ 2018, .078, Start ADT+SRT.
Sept 2018 thru May 2022 –PSA = <.05
Decipher test, low risk, .37 score
My story.... tinyurl.com/45w7789x
Every day’s a bonus – Sonny3
4/2021: PSA 3.124
Dx; 7/24: PSA 13.6222
MRI prostate w/ highlly suspicious lesion anterior R apex w/ extracapsular extension anteriorly - 4/1/24: Fusion bx G5+4 in 1 core; 4+5 in 7 cores- 5/9/24: PSMA PET w/ avid lesion in R apex of prostate w/ concern for ECE, no distant disease.- 5/21/24: Started first lupron. PSA 10.635- 6/2024: Started abi/pred.- 7/16/24: PSA 1.385
4/2021: PSA 3.124
7/24: PSA 13.6222
MRI prostate w/ highlly suspicious lesion anterior R apex w/ extracapsular extension anteriorly - 4/1/24: Fusion bx G5+4 in 1 core; 4+5 in 7 cores- 5/9/24: PSMA PET w/ avid lesion in R apex of prostate w/ concern for ECE, no distant disease.- 5/21/24: Started first lupron. PSA 10.635- 6/2024: Started abi/pred.- 7/16/24: PSA 1.385
Dx; 7/24: PSA 13.6222
MRI prostate w/ highlly suspicious lesion anterior R apex w/ extracapsular extension anteriorly - 4/1/24: Fusion bx G5+4 in 1 core; 4+5 in 7 cores- 5/9/24: PSMA PET w/ avid lesion in R apex of prostate w/ concern for ECE, no distant disease.- 5/21/24: Started first lupron. PSA 10.635- 6/2024: Started abi/pred.- 7/16/24: PSA 1.385
4/2021: PSA 3.124
7/24: PSA 13.6222
MRI prostate w/ highlly suspicious lesion anterior R apex w/ extracapsular extension anteriorly - 4/1/24: Fusion bx G5+4 in 1 core; 4+5 in 7 cores- 5/9/24: PSMA PET w/ avid lesion in R apex of prostate w/ concern for ECE, no distant disease.- 5/21/24: Started first lupron. PSA 10.635- 6/2024: Started abi/pred.- 7/16/24: PSA 1.385
Your limited responses of the Gleason 9 club shows and affirms what my UroOnc tells me every four months as to how lucky and blessed I am to have survived 15+years with this nasty cancer.
I want to thank all the men and women that have dedicated their lives to research, surgery, radiology, pharmacology, chemistry, counseling and all the other areas of medicine that help us all fight PCa and have a chance for extra bonus days! God bless you for your devotion.
Age 50
DRE Positive, Tumor Left Apex, Biopsy 7 out of 12 positive, Gleason 9 (5+4) both sides, Dx 2/15/10,
RRP 4/27/10. Pathology, 25% cancer, PCa in margins, lymph node, seminal vesicles, pt3bI (really stage 4) One lymph node positive
12-19-12 Lost my less than sign on my ultra-senstivie PSA test. Currently 0.01
1st Lupron Shot (45 mg) and Cassodex on January 11, 2013
IGRT and IMRT 2013
I want to thank all the men and women that have dedicated their lives to research, surgery, radiology, pharmacology, chemistry, counseling and all the other areas of medicine that help us all fight PCa and have a chance for extra bonus days! God bless you for your devotion.
Age 50
DRE Positive, Tumor Left Apex, Biopsy 7 out of 12 positive, Gleason 9 (5+4) both sides, Dx 2/15/10,
RRP 4/27/10. Pathology, 25% cancer, PCa in margins, lymph node, seminal vesicles, pt3bI (really stage 4) One lymph node positive
12-19-12 Lost my less than sign on my ultra-senstivie PSA test. Currently 0.01
1st Lupron Shot (45 mg) and Cassodex on January 11, 2013
IGRT and IMRT 2013
Diagnosed in 2013 Gleason 9, stage T3B with all the extras. Had prostate removed Nov 2013, 2years Lupron, radiation to prostate bed in 2014. Undetected until 2018 with slow rise. In 2020 & 2021 PSA took off and scans showed L4 met and cancer in retroperitoneal lymph nodes. Started Lupron May 2021, added Erleada Feb 2022, and then changed to Zytiga in Jan 2023. Undetected shortly after adding Erleada. Quit Lupron and Zytiga in Nov 2023 due to depression from side-effects. I've been undetected for the last 2 years with Testosterone dropping from 49 to current level of 33. So 12 years and still going, but stage 4 from May 2021.
Congrats Don on making it 13 years as a Stage 4 Pca survivor. Let us continue to enjoy each and every bonus day.
Age 50
DRE Positive, Tumor Left Apex, Biopsy 7 out of 12 positive, Gleason 9 (5+4) both sides, Dx 2/15/10,
RRP 4/27/10. Pathology, 25% cancer, PCa in margins, lymph node, seminal vesicles, pt3bI (really stage 4) One lymph node positive
12-19-12 Lost my less than sign on my ultra-senstivie PSA test. Currently 0.01
1st Lupron Shot (45 mg) and Cassodex on January 11, 2013
IGRT and IMRT 2013
Age 50
DRE Positive, Tumor Left Apex, Biopsy 7 out of 12 positive, Gleason 9 (5+4) both sides, Dx 2/15/10,
RRP 4/27/10. Pathology, 25% cancer, PCa in margins, lymph node, seminal vesicles, pt3bI (really stage 4) One lymph node positive
12-19-12 Lost my less than sign on my ultra-senstivie PSA test. Currently 0.01
1st Lupron Shot (45 mg) and Cassodex on January 11, 2013
IGRT and IMRT 2013
Gleaned from the posts above:
"It's been 15 years of blessed bonus days."
"Still here. 13+ years."
" 8 years+ <0.01."
"have now passed the 4 year mark."
"have survived 15+years with this nasty cancer."
Now isn't that encouraging or what?
A great reminder that if some statistic tells us we have only x years left after a G9 diagnosis, that that is only a number, just an average.
When it come to us as individuals, lots of us can spit in the beast's eye, when it's a matter of longevity.
Age: 80
Chronic prostatitis (age 60 on)
BPH w/ urinary obstruction, 6/2011
TURP, 7/2011
Ongoing high PSA, 7/2011-12/2011
Biopsy, 12/2011: positive 3/12 (90%, 70%, 5%)
Gleason 6(3+3), T1c
No mets, PCa likely still organ contained
IMRT w/ HT (Lupron), 4/2012-6/2012
PSAs (since post-IMRT): < 1.0
"It's been 15 years of blessed bonus days."
"Still here. 13+ years."
" 8 years+ <0.01."
"have now passed the 4 year mark."
"have survived 15+years with this nasty cancer."
Now isn't that encouraging or what?
A great reminder that if some statistic tells us we have only x years left after a G9 diagnosis, that that is only a number, just an average.
When it come to us as individuals, lots of us can spit in the beast's eye, when it's a matter of longevity.
Age: 80
Chronic prostatitis (age 60 on)
BPH w/ urinary obstruction, 6/2011
TURP, 7/2011
Ongoing high PSA, 7/2011-12/2011
Biopsy, 12/2011: positive 3/12 (90%, 70%, 5%)
Gleason 6(3+3), T1c
No mets, PCa likely still organ contained
IMRT w/ HT (Lupron), 4/2012-6/2012
PSAs (since post-IMRT): < 1.0
Great summazation 81GyGuy from the posts. I'm sure we all were told that we had somewhere we had 6 to 24 months from 6 to 24 months to ive.. Most of us had to put our affairs in order anticipating death would be knocking on our door and for some unknown reason,, we are still alive and celebrating every bonus day that we are blessed with.
I hope this gives everyone hope that is dealing with this nasty cancer, that there is hope for you. Sorround yourself with great doctors, nurses, oncologists, radiologists, and use every treatment bullet that you cn use to fight PCa.
God speed to all pf is going through this journey,
Age 50
DRE Positive, Tumor Left Apex, Biopsy 7 out of 12 positive, Gleason 9 (5+4) both sides, Dx 2/15/10,
RRP 4/27/10. Pathology, 25% cancer, PCa in margins, lymph node, seminal vesicles, pt3bI (really stage 4) One lymph node positive
12-19-12 Lost my less than sign on my ultra-senstivie PSA test. Currently 0.01
1st Lupron Shot (45 mg) and Cassodex on January 11, 2013
IGRT and IMRT 2013
I hope this gives everyone hope that is dealing with this nasty cancer, that there is hope for you. Sorround yourself with great doctors, nurses, oncologists, radiologists, and use every treatment bullet that you cn use to fight PCa.
God speed to all pf is going through this journey,
Age 50
DRE Positive, Tumor Left Apex, Biopsy 7 out of 12 positive, Gleason 9 (5+4) both sides, Dx 2/15/10,
RRP 4/27/10. Pathology, 25% cancer, PCa in margins, lymph node, seminal vesicles, pt3bI (really stage 4) One lymph node positive
12-19-12 Lost my less than sign on my ultra-senstivie PSA test. Currently 0.01
1st Lupron Shot (45 mg) and Cassodex on January 11, 2013
IGRT and IMRT 2013
My husband was diagnosed and had surgery in 2013. I am thankful for everyday he is still with us.
Husband was 70 yrs old when he was diagnosed in Jan 2013 with aggressive ductal prostate cancer Gleason 4+5=9 PSA 8.4 Received Cabazitaxel and Carboplation, along with hormone therapy. Surgery on 6-26-13 to remove bladder, prostate, seminal vesicles, testicles, and lymph nodes. Had creation of ileal urinary cutaneous conduit. Final pathology report T4,N1,M0. Radiated several recurrences to bones
Husband was 70 yrs old when he was diagnosed in Jan 2013 with aggressive ductal prostate cancer Gleason 4+5=9 PSA 8.4 Received Cabazitaxel and Carboplation, along with hormone therapy. Surgery on 6-26-13 to remove bladder, prostate, seminal vesicles, testicles, and lymph nodes. Had creation of ileal urinary cutaneous conduit. Final pathology report T4,N1,M0. Radiated several recurrences to bones
I was diagnosed G10 in December of 2017. Initial treatment was EBRT, LDR Brachy and 2 years of ADT. In January 2022 low volume stage iv mets were found in L1 lumbar and lymph nodes. Currently on lupron and abiraterone....PSA < 0.1 Keep the faith !
My brother’s brother-in-law was treated for G9 before I was dx. He never provided me with the dx details. He provided me with his treatment experience as I was starting mine. At the time, he questioned my use of radiotherapy as he understood that surgery was the best initial therapy. As I remember, he was dx in 2008 and rushed to surgery with no other treatment or doctor assessments. Unfortunately the surgery failed and when I met with him late in 2010 he had completed SRT and was on Lupron. The good news is that he is still doing all right, but has been on continuous treatments now for more than 15 years. He recently sold his business and has settled into retirement.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta
logo still. Here...I got the long straw... soft 9...
Also still here, Gleason 4+5 T3a. Surgery 2008 and radiation 2011. Tested 4/9/2026 <0.008.
Gleason score 9 in 2018 5+4, prostectamy in 2019, radiation two months after, and now on lupron and xtandi for three years present psa is <0.1
Checking in late to this thread. I just had my 13th anniversary since diagnosis in 2013. I feel very blessed, and glad to see some familiar names here!
(Looking foward to the next GFMPH in Brusly, LA this coming weekend - hope to see some of you there!)
Mine was G9 5+4, stage cT3a, details in signature.
55@Dx on 4/13. PSA 5.2, 6/12 cores G9(5+4), PNI+, cT3a MRI.
IGRT - 44 sessions (79.2 Gy, 50.4 Gy pelvic)
ADT2 - Lupron+Casodex (5/13-3/16)
PSA:
8/13-5/16 <0.1 (ADT2)
5/16-3/17 <0.1 post ADT2
3/17-3/19 varying, trending up ~ 0.6 - 1.0 (w/o TX)
4/19 - recurring, so ADT (orchiectomy) and estradiol patches
7/19 - 1/25 <0.1
My Story
(Looking foward to the next GFMPH in Brusly, LA this coming weekend - hope to see some of you there!)
Mine was G9 5+4, stage cT3a, details in signature.
55@Dx on 4/13. PSA 5.2, 6/12 cores G9(5+4), PNI+, cT3a MRI.
IGRT - 44 sessions (79.2 Gy, 50.4 Gy pelvic)
ADT2 - Lupron+Casodex (5/13-3/16)
PSA:
8/13-5/16 <0.1 (ADT2)
5/16-3/17 <0.1 post ADT2
3/17-3/19 varying, trending up ~ 0.6 - 1.0 (w/o TX)
4/19 - recurring, so ADT (orchiectomy) and estradiol patches
7/19 - 1/25 <0.1
My Story