A practising family doctor, I felt myself in reasonable shape if overweight. One trivial episode blood in urine; no other urologic symptoms.
PSA 330 -> Gleason 4+4 on all cores
Septicaemia after biopsy (urgent hospital admission, positive blood cultures, I/V antibiotics) Bone scan negative.
MRI shows huge >300ml prostate tumour with local invasion to bladder, pelvic muscles and seminal vesicles.
74Gy EBRT - conformal (not IMRT, IGRT or DGRT) Entered Stampede Trial. Having Zoledronic acid (Zometa) every 4 weeks.
Very symptomatic year since diagnosis - quite a few post-radiotherapy symptoms - partly as tumour size resulted in huge dose. Took medical retirement.
Plusses: Still good PSA despite unpromising start. Slow to recover from EBRT but better in self lately. Very glad to have retired. I would not have been able to work with the ADT side effects. Still in Stampede trial - 17 Zometa infusions done, 10 to go! Regularly attend cancer counselor Paula - a vital member of my support team.
Minuses: Rectal bleeding increasing over past 6 months. Sometimes severe. I have decided against any investigation or intervention for the present. ED and absent libido were predictable but still upsetting. Flushes sometimes very severe especially after Zometa. Tiredness very unpredictable - can have good weeks. Zometa infusions much more intrusive on life than expected: flu-like symptoms and tiredness confine me to house for 2 days and not fully recovered for 4 days. The 4 week break between infusions sometimes feels very short.
However! I applied for Olympics tickets on 25.4.2011, before my EBRT and with a real possibility I might not get to use them. I now have tickets for 5 events, all of which I can travel to from my own front door. I will be at the rowing this time 2 weeks. Incredible or what!
Finished Stampede trial 2 months ago - this involved 28 infusions Zometa. Side effects increasingly troublesome towards end of trial: lassitude ands flu like symptoms, off feet up to a week.
Plan is to stop ADT now after two and a half years and aim for intermittent use - I would be due Triptorelin next week - this will be my first omitted dose.
Good year for activity and quality of life. Visited New York (US open tennis, Mets baseball, Jets football) with family. Did full Perth to Sydney Indian Pacific train journey with my wife. The 3 day train trip went without a hitch. Just attended a full Wagner Ring Cycle at the proms in the Royal Albert Hall. Prostate Cancer can really get you off your a*** to do all those things you always really intended doing but never got round to!
Full year off ADT completed uneventfully.
Testosterone has risen from undetectable on treatment to between 2 and 3 now. Seems to have plateaued so I still have very low testosterone though not castrate levels. Enough to restore some erectile function and orgasms.
Weight has stopped increasing though I still carry 30kg I gained during ADT - possibly because ADT was so successful - my testosterone was <0.4, i.e. below the labs reference range for detectability.
Finally back on bicycle.
Plan is to restart ADT in due course when PSA above 2 or clearly rapidly rising.
Our current choice of "next" therapy would be enzalutamide when castrate resistance becomes evident.
Quite a good year overall.
Testosterone is slowly increasing, as is PSA though still at very low levels. Now over 2 years since last Triptorelin injection.
Had put on a lot of weight leading to borderline diabetes and obstructive sleep apnea (OSA) diagnosis this time last year. Had to stop driving for 3 months while OSA being sorted out. Have managed to lose 25kg of the 30kg I had gained on ADT; result - no sign of diabetes now; HbA1c well within normal range. Using CPAP machine at night; truly life changing. Easy to get 7 hours UNINTERRUPTED high quality sleep. Just goes to show - its easy to blame the prostate for nighttime toilet visits - in my case it was my OSA which was waking me up.
Fitness much better this year - finally back to doing decent length walks in the lovely New Forest.
Quality of life remains very high. Spectacular 3 week holiday in Utah and Arizona visiting the national parks. Scenic byway 12 in Utah should be on everyone's bucket list!
Last Triptorelin injection now almost 4 years ago. Testosterone has stalled a bit around 6. General health is good, level of activity continues to improve. It does seem astonishing how long it took to recover from the radiotherapy, androgen deprivation and the zoledronic acid in the Stampede trial. It took over 5 years to start to attain levels of fitness I enjoyed prior to diagnosis - and this glacially slow progress was not for want of trying.
Weight has stayed off and blood tests show no sign of type 2 diabetes. CPAP for obstructive sleep apnea continues to be very successful.
Radiotherapy effect on bowels has been a little problematic. I do have to maintain an ultra high fruit and vegetable diet as I tolerate even the slightest constipation very poorly.
The preliminary results of the Stampede trial have been published. No benefit has been shown for my group. This is a bit disappointing as 28 attendances for infusions over 2 years was quite disruptive and I was one of the unlucky ones who had side effects every time.
I continue to enjoy travelling - in September I went from Halifax Nova Scotia to Vancouver by train - 110 hours in all!
Cormac's e-mail address is: firstname.lastname@example.org