Dx May 2015. Aged 47. PSA 67.45. Gleason 4+3=7. All cores involved (7/7 cores in 6/6 sites) T3b/(T4) (bladder base?). MRI - PIRAD 5. N0 (choline PET/CT & MRI). M0 (Bone scan). BRCA1/BRCA2 negative. Standard of care was to be HT/RT but as flexible cystoscopy of the bladder was clear, DaVinci RP was thrown into the mix.
DaVinci RP (non nerve-sparing) on 06/Aug/2015 Seminal vesicles removed. No pelvic lymph nodes removed. Negative margins. Restaged (pathology) to T3b. Gleason 4+4=8 Standard recovery. No major issues except ED. Oct 2015. PSA 0.75. Started on Casodex/Bicalutamide 50mg od with a view to salvage IMRT (TomoTherapy) from Feb 2016. Post operative imaging: MRI (clear). Choline PET/CT showed small volume, low grade uptake in solitary right interiliac lymph node. (This had shown on original diagnostic PET and had not changed in size). Dec 2015. PSA 0.31. Casodex/Bicalutamide dose increased to 150mg od. Tamoxifen 20mg od added due to nipple pain/swelling. Meds to continue throughout RT. Feb 2016. PSA 0.26. Started 33 fractions of TomoTherapy IMRT. Dosage 66 Gray to prostate bed and pelvic lymph nodes. Changed from Casodex/Bicalutamide to Goserelin/Zoladex (3 monthly) from November 2016. Onc wants me to stick with this until November 2017 then stop and see what happens to PSA. PSA dropped to 0.08 (on ADT) in July 2016 then 0.03 in November 2016, July 2017 and December 2017: Change of oncologist/hospital in January 2018. First PSA at new hospital shows PSA at (less than or equal to) 0.01 which is great news! Testosterone has finally started to rise from undetectable in April 2018 to 1.4 nmol/L in June 2018 some 12 months after my last Zoladex implant. I seem to be having every symptom in the "androgen deprivation" book and they are not improving despite me not being on Zoladex anymore.
October 2018: PSA remains at (less than or equal to) 0.01. Testosterone has jumped to 9.6 nmol/L which is just over the minimum point of the normal adult range. Hot flushes have pretty much disappeared. Fatigue and insomnia are improving but still problematic. Sex drive is returning and I'm feeling better in myself. I've been listed for penile prosthetic implant surgery as all other attempts at resolving the post-RP erectile dysfunction have failed.
January 2019: PSA is now definitively at 0.01 (rather than less than or equal to 0.01). Testosterone up to 18.8!
Other health issues include raised cholesterol (treated with Atorvastatin), GORD (treated with Omeprazole/Ranitadine), anxiety (treated with propranolol), depression (treated with Escitalopram). Osteopaenia. Reasonably fit and well most of the time. Swim most days and do the gym as often as I feel up to it. Eat healthily and well. Moderate alcohol. Non smoker.
May 2019: Had my prosthetic penile implant surgery in April and all went well. They implanted the Titan Coloplast inflatable model. Still healing but the pain, even on inflation, is nearly gone.
Most recent oncology review threw up an unwelcome surprise. PSA is up from 0.01 to 0.03. This is causing me a lot of anxiety. Next PSA at end August. Testosterone stable at 18.8
Sept. 2019: PSA up again from 0.03 end of May to 0.07 end of Aug. Testosterone still increasing and now at 22.1 Plan is ongoing surveillance with a view to possible fresh imaging at some indeterminate point.
Nov 2019: PSA up to 0.10 now from 0.07 in Aug. Testosterone has dropped back to 19.0 from 22.1. They've told me that a PSA of 0.10 or less represents a "cure" whereas a PSA of 0.20 or more indicates possible biochemical relapse. Currently I am about to enter no man's land I guess!
Onc wants to keep a very close eye on me just now and I will be reviewed in Jan 2020. Should the PSA have risen beyond 0.20 by then, a PSMA scan will be on the cards.
Jan 2020. Good news (for a change). My PSA has stabilised and has actually gone down a fraction. It's now at 0.09. Testosterone up a whisker at 20.0. I'll be reviewed again in 4 months.
May 2020. Mid lockdown PSA test at my local GP surgery shows a jump to 0.20 up from 0.09 in Jan. That's a worry. Testosterone now at 25.0 which is just shy of the maximum of the normal range. Not bad for a 50 something "old git"! Oncologist wants a further PSA test done at hospital in June.
June 2020. PSA up a fraction at 0.22. Oncologist wants to do a PSMA scan as a baseline. Though I have had two PET scans in the past, I've not had a PSMA one. She requested yet another PSA test and will review me with scan and blood test results on 8th July.
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Sept 2020. 18F PET PSMA scan in June was totally clear which makes it hard to understand why my latest PSA has jumped from 0.27 in July to 0.47 in Sept. I'll be reviewed again in October with a further PSA.
Since my last update in Sept 2020, my PSA has been steadily rising to 8.62 at the last measurement in Nov 2023. I have been having 6-monthly PSMA PET scans since then and the last two of these showed a small number of suspicious "spots" in a lymph node in the pelvic region (right common iliac node). No further spread was identified anywhere else. Lately these spots became large enough to treat safely using a combination of SABR (Stereotactic Ablative Radiotherapy) plus Bicalutamide 50mg for a month and a half and a 3-month course of ADT (triptorelin). My total radiotherapy course, this time, was only 3 sessions and I was done in a week. So far, I'm doing okay with the ADT side effects not too bothersome. I will be reviewed by my consultant in Clinic at UCLH in May with a PSA test just beforehand.
After last year's SABR plus ADT, my PSA came down to 0.14 by the time I had finished my ADT treatment (May 2023). PSA increased incrementally month by month thereafter to reach 14.7 in December 2023 at which point I had a further PSMA PET scan. This scam showed no change to the existing/known spot in a pelvic lymph nodes but revealed a further very small spot on another pelvic lymph node. Time for treatment. I started a month of Bicalutamide 50mg in January followed by a 3 month shot of triptorelin. My oncologist offered to add a second generation ADT med into the mix but I've decided to keep this in reserve whilst we see the effect of the first generation drugs. He is hoping that I can be on ADT on an intermittent basis but that depends on my response to this current round of ADT, I guess. Side effects thus far are manageable (apart from the total absence of any sex drive). I'm swimming and doing weights at the gym on a regular basis to try to mitigate the muscle loss and weight gain.
