In 2015 I was diagnosed with an enlarged prostate and a PSA of 8. An MRI scan followed and subsequently a general anaesthetic and a trans rectal biopsy at the Freeman Hospital. Twelve biopsies were taken which resulted in a serious bleed and a prolonged hospital stay. The result of the biopsy was that there was no prostatic carcinoma found and the diagnosis was therefore benign hyperplasia. The Consultant then organised a prostatic artery embolisation. I received one check up a few weeks later. The assumption was that my prostate would wither and not cause any further problems.
In late 2021 I began having urinary problems and I assumed it was due to a possible stricture caused by the prostatic embolisation. The unrinary problem became worse and I began self catheterisation. I saw my GP to arrange a referral to the Consultant that had performed my operation. I was told there was a 9 month waiting list. It was unacceptable given my condition so arranged to see him privately but even then there was a 3 month waiting list.
On seeing my Consultant he immediately fast tracked me along the cancer investigation route. I then had a CAT and MRI scan followed by trans perineal biopsies.
I received my results at the Freeman Hospital from a prostatic surgeon as my Consultant did not deal with prostatic cancer. At least 6 people were gathered in a very small consulting room when I entered with my wife. I was told I had prostatic carcinoma which was locally advanced, the size of my prostate meant that I was inoperable and radiation therapy could not be considered. A meeting was to be held with an oncologist and other team members to discuss a treatment plan. He then tried to explain how I would need to consider my quality of life as it would be vastly altered. I interrupted him to say I had spent most of my professional life dealing with the quality of life, he then asked me what I did and I explained I was a retired Veterinary Surgeon. He had obviously not read my notes. The others in the room seem to be paying more attention to how my wife was reacting to the news.I was told my Gleason score was 9. We were then shuffled off to another room with a prostatic nurse and a doctor. I was given leaflets and given a number to ring if I needed to speak to a prostatic nurse and they would ring me back.
I then had to wait for the team to decide how they were going to treat me. During the following 6 weeks we heard nothing and my wife and myself tried several times to get in touch with the nurses and left messages but we never received a call back. I also contacted the surgeon’s secretary who promised me that he would get in touch soon. He never did so I sought the help of PALS. They got results and we heard from the surgeon immediately. I was told I would receive hormone treatment and chemotherapy. I saw an oncologist who began my therapy but he had also had a conversation with my original Consultant who specialised in the HOLEP procedure. I made an appointment to see the Consultant and discussed the HOLEP procedure and we decided that it was going to be too risky. His thoughts were that we were going to have to think outside the box and sent me to see a colleague who was a top robotic surgeon. This Consultant advised that he would attempt a radical prostatectomy using the DA VINCI robot. This would be the largest prostate he had ever removed.
During this time I had several meetings with the oncologist who picked up on the fact that I was not coping well. He referred me for a psychiatric appraisal but we have, to date, heard nothing. My wife, following her recent breast cancer journey, had received complimentary treatment at the Coping With Cancer Centre in Cramlington. She arranged for me to see a counsellor which has helped enormously in the short term.
I had my operation in February and I have now stopped all other treatment. As a result of this I am no longer a physical and emotional wreck. I had suffered a 2 month period of total amnesia. We are monitoring my PSA every 3 months and when my PSA reaches 1 investigations will restart.
Canverville is not a pleasant place.You have no choice when you are sent there. The only people who understand what it is like to be a native there are fellow cancer sufferers. However, there are lots of tourists there, mainly health professionals.
I can count myself fortunate in having a medical background, knocking on many doors to get myself sat in front of the right people. The first rule of Cancerville, if you want to live longer, is to be prepared to suffer or be broken more. I can count only three people that I consulted with that were prepared to think outside the box, had some understanding of my suffering, were supportive and were motivated enough to pull out all the stops and bend the rules. The tourists who let me down I feel sad for but I have immense gratitude for the three who gave me hope.
Footnote to my story is that I advised my 2 brothers to get a PSA test. One was fine but my youngest brother had a PSA 4.8 reading and an enlarged prostate. He asked his GP for a referral to have an MRI scan, the reason being my situation should warrant further investigation. His GP refused and told him to go home and forget about it. Thankfully he didn’t take this advice, he sought a private second opinion from a recognised expert in the field. He was immediately sent for an MRI which came back as suspicious. He had trans perineal biopsies (17) which indicated that he has prostetic carcinoma. His PSA rose, over 3 months, to 8.5. He is now awaiting radiotherapy or surgery.