Diagnosed in York, UK. Had pain around urethra area, so radiologist advised against brachytherapy and EBRT (External Beam Radiation Treatment). Surgery on Oct 8th 1996 - radical prostatectomy. Difficult due to fibrous tumour near urethra. Pathology showed tumour very close to the edge.
High leakage after removal of catheter, Used external catheter (sheath changed daily) for six months when changed to pads, until 2009.
Used Caverject penile injections as the nerves had been severed.
PSA below measurable after 3 months, the climbed slowly for 3 years, then doubled from 9.0 to 19.0
Started Casodex (Bicalutamide) - low circa 1.6 PSA after 18 months, then doubling quickly.
2002 Went on Casodex + Onyvax Vaccine (immunisation of irradiated PCa cells) - trial at St George's London, seemed to hold PSA doubling rate for about 13 months
2004 Changed to low dose Cyclophosphamide trial at St George's, quickly picked up high creatinine in blood, ultra sound found right ureter restricted, stent fitted. Stopped Casodex, started monthly Zoladex, followed by EBRT in 2005.
When PSA started rising added Casodex, but had bowel problems (unusual)
Added diethylstilboestrol (DES) plus Clopidogrel (to reduce risk of thrombosis)
PSA is now stabilised at about 50.0
PSA started rising again and quickly in autumn 2011. Urologist Mr Mike Stower retired on day that he passed me on to oncologist Dr Bottomley from St James's Hospital at Leeds.
Dr B initially tried Dxamathasone but by March it was evident that this option was not working. Still it had no significant side effects, in fact it boosted my QOL. I had some pain in my left hip and discussed Zometa with him. This was started a week later as a 4 weekly infusion.
The next step was to start chemotherapy in April (Docetaxel - 3 weekly infusion and prednisolone 2 x 5mg tablets daily. I am due 10 courses of chemo. So far I am doing well after 2 doses, with side effects less significant than expected. Tiredness mainly during the 5 to 12 days period after treatment. Some loose motions in the first week or so controlled by an odd codeine tablet and any IBS symptoms controlled through Buscopan.
Pleased that I still have the option of abiraterone after chemo.
Chemo finished November 2012. PSA continued down to about 150 in March 2013. Last 3 months PSA curve tailed off and is now about 140.
Am now in a good place in that effects of chemo have worn off, but PSA still going down, though slower. Bone markers remain good
Consultant has added carbotaxol as next choice.
Now 17 years since diagnosis.
One issue is the earlier secondary in my left hip seems to have caused some damage. eg Had a poor night with sciatica last week.
Stopped steroid started Enzalutamide (4 tablets) in April/May, fatigue helped by taking it in the evening, but although the blood tests showed improvements in bone indicators we decided to stop in June for a "treatment holiday". Lost 6kg in fluid. We had tried co-codamol for pain control (secondaries in pelvis, mainly left hip and buttock). This added to fatigue and constipation.
Using braces to hold my trousers up instead of a belt that digs into the hip.
Moved to low dose pain patches plus paracetamol and ibroprophen gell generally pain under control, have Oromorph to take 1.25ml for rare pain breakthrough.
Restarted Enzalutamide (evening) half dose plus one dexamethasone (morning) living a fairly normal life. Sitting still uncomfortable.
Decisions in meeting registrar this week to go up to 3 tablets of enzalutamide plus one session zap of the secondary in the buttocks.
PCa spread to hip and spine. Had radiotherapy to hip and spine (2 single doses).
Feb 2015 realised Enzalutamide wasn't working.
Started Carbazitaxol had 9 out of 10 treatments, last next week.
Bone markers back to normal and PSA reduced from 340 to about 200.
[Sadly, we were informed that Bryan passed away on 20th October 2016]