The Lucky Journey Continues – a story of persistence! Part 2 - See Part 1 Here
Following my article “Brian’s Lucky Journey”, shown on our website under the heading ‘Members Experiences’, unfortunately and unexpectedly my journey continued.
It is best to go on to our website and read the full previous article but, put very simply, in October 2016 at a free PCaSO testing day my PSA was found to be 5.4. By 2017 I had PSA 6.9, Gleeson of 4+3 and staging T3A N0 M0, locally advanced prostate cancer. I was treated initially by hormone therapy, prior to HDR brachytherapy and external beam radiotherapy, resulting in a PSA of 1.33.
Fortunately, thanks to my participation in the Add Aspirin clinical trial, I was having my PSA checked every few months after treatment, and was also seeing my treatment consultant, who was the lead consultant for the AA trial in Brighton.
For several months my PSA rose steadily. This was initially attributed to ‘the bounce’, a short-term rise in PSA which is apparently known and quite common after treatment. However, in 2018, nine months after treatment, my PSA reading was up to 3.96, and my consultant decided to start further investigation.
First was a negative MRI scan.
Second was a negative choline PET scan.
But my PSA was still not stabilising. My consultant was unsure if this was ‘the bounce’ or not.
Third was another negative choline PET scan.
In between scans I started to see blood in my stools and, after a flexible sigmoidoscopy (rectal camera examination), was diagnosed with radiation proctitis. This is a known, possible side-effect of my treatment, due to radiotherapy damage in the rectum, but is nothing sinister.
Fourth came a bone scan, which showed no signs of the cancer.
But my PSA was still showing no sign of dropping, and I discussed what to do next with my consultant.
Luckily, at this stage in early 2019, my oncology registrar daughter pointed me to clinical trials of a PSMA scan at UCLH London. This scan is currently generally unavailable for NHS patients, as it is still being evaluated as a tool for prostate cancer diagnosis. After my numerous emails with the lead radiographer, and due to a breakdown of communication with my treatment team, I was not accepted onto the trial. Amazingly, however, and probably because I became a nuisance with my emails, I was nevertheless offered a free scan! Hooray! A day-trip to London for the scan in June 2019 ensued.
As keen sailors, we had already decided to take our summer holiday sailing the north coast of France. One hot evening at about 2000 French time I had a phone call from an unknown number and, being a couple of glasses of red wine down, I made the unusual decision to answer it. It was my consultant, who informed me that the PSMA scan had successfully picked up cancer cells in the pelvic lymph nodes. He now knew where the cancer cells which were causing the rising PSA were located, and could thus treat them. The multi-disciplinary team had already formulated a plan, and I should start treatment straight away!
Oh dear! Our sailing plans were cancelled, and it took us a week to get back to England, initially to restart hormone treatment with bicalutamide tablets and then, hey ho, another course of monthly Zoladex injections. Treatment begun, we did return straight back to France for a few weeks, but our sailing plans were very much scuppered.
Back on the treatment path again, Zoladex injections continued, followed by 23 two-Gray sessions of external beam radiotherapy. Fortunately, because the treatment was higher up the pelvic area, I did not have to take the ‘enemy’ (enema) before each session.
It was at Preston Park radiotherapy centre that I met fellow sufferers Rob and Brian. I have always believed in the benefits of sharing experiences and comparing notes on side effects and progress. Brian and Rob have both become good friends, and we keep in touch regularly, mainly through our love of off road cycling - but that’s another story.
Fitness has played a major role in staying healthy and psychologically positive. Cycling, walking and upper body strengthening now play a key part in my life. You cannot beat the outside ‘green gym’ to lift your spirits!
Throughout the treatment years my wife and I have continued to follow a healthy diet on the basis of everything in moderation, and this works for both of us – no special diet required. We have cut out processed meats, greatly reduced red meat and consumption of other processed foods, and eaten more fruit, vegetables, chicken and fish - sometimes called the Mediterranean diet. My wife buys fresh, locally sourced ingredients where possible, and we home cook to get the best benefits.
Friday 13th December 2019 – radiotherapy treatment finished, blood test for Add Aspirin trial. PSA 0.03.
After celebrating my 65th birthday with my family in early January 2020, we decided to escape the winter for a couple of weeks to the sun. Whilst sitting on a sunbed I noticed that my ankles had swollen badly, so I researched on the NHS and Macmillan websites and found information that suggested oedema. Holding a finger on the ankle left an indentation, which was subsequently confirmed as pitting oedema.
In March 2020, Coronavirus hit the world.
I had a post-treatment CT scan, then a call from my consultant on 6 June 2020 in lieu of a face-to-face consultation. CT scan all clear! Brilliant news, and a good virtual family celebration that evening.
Despite the oedema being an ongoing problem, it is not life-threatening, and is being resolved mainly with self-help – diuretic tablets to reduce water content, compression stockings, exercise, moisturisation and self-massage.
Having received my final three-month Zoladex injection in May 2020, it is now a case of waiting for its effects to gradually wane and for my testosterone levels to rise again. A further PSA test and consultation are planned for December 2020.
It is not unusual to have a higher PSA reading after treatment due to ‘the bounce’. Indeed, five years ago my business partner had a rising PSA post-brachytherapy treatment, not reducing to 0.8 until two years afterwards. Another three years later, it has reached a low of 0.1.
Try not to get demoralised, and aim to keep a positive attitude. Try to focus on the positive aspects of dealing with your own situation, and the good things that come your way during your own journey.
Be pro-active in chasing up appointments for treatment.
As described, and in my earlier report in Updates 64, I believe fitness and healthy eating are vitally important.
Zoladex injections are not particularly painful, but I found the application of EMLA cream (from the chemist) an hour or so beforehand made them much more comfortable to have administered.
The NHS will always make their best efforts with all available approved resources to ensure a good outcome. At all stages of investigation and treatment the service provided by our NHS was, as always, excellent.
8.10.16 Brian’s Lucky Journey starts with PSA test, 5.48, at PCaSO testing day.
Subsequent PSA results and Investigations/Treatments
4.10.17 0.87 After course of Zoladex (hormone therapy), Pre-Brachytherapy 11.02.18 1.33 Post-Brachytherapy and External Beam Radiotherapy, pre-Add Aspirin trial (AA) 20.3.18 1.77 AA 29.05.18 2.78 AA 30.08.18 3.96 AA 21.9.18 MRI at Princess Royal Hospital (PRH) 5.11.18 4.16 AA 6.11.18 Choline PET scan at University of Sussex (Sx Uni) 27.11.18 5.08 AA 22.12.18 Colorectal flexisigmoidoscopy (rectal camera test) 25.02.19 5.38 AA 11.3.19 Choline PET scan Sx Uni 10.4.19 Bone scan 10.06.19 5.94 AA 28.6.19 PSMA scan at UCLH, London 25.7.19 On holiday at Dives, France. Call from consultant 1.08.19 4.99 AA 2.8.19 First Bicalutamide (hormone therapy tablet) 5.8.19 First monthly Zoladex injection 3.9.19 Zoladex 18.9.19 0.21 After restarting Zoladex 24.9.19 Consultant 1.10.19 Zoladex 12.11.19 Radiotherapy begins 13.12.19 Radiotherapy ends 13.12.19 PSA 0.03 ! For AA 28.01.20 PSA 0.02 For consultant review 26.05.20 Last Zoladex 3 monthly 22.06.20 PSA 0.02 For consultant review. 20.12.20 ??????? Consultant review following testosterone increase.
Should you have any queries or want further advice after reading about my journey, please contact me by email: