Roy Grundy is one of several BPC patients who have travelled to Germany for an ultra-sensitive PSMA based PET scan. He describes his experience and seven year prostate cancer journey.

“When I turned 70, I had a health MOT at my GP surgery. I was given a clean bill of health but I told my doctor I was feeling groggy and tired. He said – there is one more test to do; let’s carry out a PSA test (prostate specific antigen).

At the time, it was almost two years to the day when my wife Pauline had died of cancer. She went through so much: surgery three times, radiotherapy, chemotherapy and consequently and to support her, I had done a lot of research to learn all I could about her cancer and treatment. So, when I was told I had prostate cancer, my first thoughts were: is this really happening to me? Equally – how could I not have known about PSA tests?

My PSA result was 27 and I was referred to my local hospital in Lincoln for a biopsy. I saw a nurse who told me I had prostate cancer, but gave me very little other information or guidance. Through my experience of trying to help my wife, I went online to find out as much as I could, looking for services that clearly specialised in prostate cancer treatment. By the time I went back my GP two weeks later, I had a strategy in place: I explained that I wanted to travel and go to the Birmingham Prostate Clinic for my treatment.

Roy Grundy in Amsterdam

The first person I saw in Birmingham was Mr Doherty, who made me feel completely confident in the choice I’d made. Because my PSA was high, I was advised to go onto hormone therapy straight away. I talked to Mr Doherty about surgery, then saw oncologist Dr El-Modir about non-surgical treatment and met the specialist nurse, Nula Allen. I am a scientist and my professional instinct was not to panic; to check and check again by carefully evaluating all the evidence.

The hormone treatment brought my PSA down to 4.5, but by 2011 it started to rise again and we reached the conclusion to proceed to surgery. I had a specialist procedure called extended lymph node dissection radical prostatectomy as the best method for my aggressive type of cancer (my Gleason score was 4 + 5). Within two to three weeks of surgery, I was carrying on as normal; a bit sore, but it wasn’t a big deal.

After surgery, my PSA went down to zero but up again to 2 within a year. I had MRI and PET scans, but they came back clear. Mr Doherty believed there was something but the scanning technology in the UK wasn’t sufficiently sensitive to pin-point it. A number of BPC patients had travelled to Munich for a highly sensitive PSMA based PET scan and I felt in my circumstances, this would be worthwhile for me.

In October 2014, I had a PSMA based PET scan which found a dot of cancer located on my spine. Dr El-Modir was then able to very efficiently treat this small area with the Cyberknife. To me, this was an excellent application of medical technology: I always wanted to avoid a ‘blunt tool’ approach of blasting the whole body without knowing where the cancer was. My treatment was targeted, effective and I had no side-effects whatsoever.

The Cyberknife treatment brought my PSA down to 2.8 and it remained low for more than a year, before moving up to 4 as we moved into 2016. Again, there was no evidence from UK scans as to the cause of this change and so I travelled back to Munich, convinced of the technology they use. The scans showed no evidence of recurrence around the spine; the CyberKnife had done its job. They reported suspicion of four spots on the prostate bed which were at a very early stage of cancer but likely to be fuelling the increase in PSA. To address this, I had a course of an advanced type of radiotherapy called Tomotherapy, driving from Lincoln to Birmingham for each session.

I’m 76 now and have been living with prostate cancer for seven years. Of course, there is a tinge of apprehension when I have a PSA test and the knowledge that sometimes, it will lead to more bouts of tests and treatments. I have always tried to consider my appointments for prostate cancer like I would consider work appointments; they are necessary, they go in the diary and need to be fulfilled.

I have so much gratitude for the whole team at the Birmingham Prostate Clinic. In the seven years of my treatment, I have felt wholly confident that they know what they are doing and equally, that they respect your own individual input in decision making too. I have always wanted to play my part: my diet is good, my weight is right and my mind is strong. Inevitably, it is challenging but after seven years, I feel well and positive about all I have been through and what the future holds.”