The meeting with Mr Singh didn’t take place this morning as scheduled. I got a phone call about 9.00 am to tell me it has been cancelled and would have to be rearranged. Given that I had been steeling myself for this and preparing myself for bad news so I wouldn’t be too disappointed if that’s what it turned out to be, this was a considerable let down. However, at 5.00 pm I got a phone call from David, one of the specialist urology nurses offering to go over what would have been discussed at the meeting. First the good news. My PSA level is now 0.02. The bad news is that there was (as he put it) a massive amount of cancer in my prostate and there was evidence of cancer cells right up to the margin of the additional tissue they took around the area where it was poking through the prostate surface. The test of the cancer in the prostate showed it was at stage T3 so at least this is not more aggressive than the biopsy had shown. It was the much greater volume and spread that had surprised them.
He then detailed what this meant. The normal ‘gold standard’ treatment for men in my situation would be to look at the PSA level again in 6 weeks to see if it was going up. Regular monitoring would take place until the level reached 0.2 at which point further treatment, almost certainly radiotherapy, would be recommended. About 50% of men in my condition would have a stable PSA at for many years and never reach the stage when radiotherapy would be required. Of the remaining 50% half would have radiotherapy at some stage and then become stable for the rest of their lives and the other half would continue to develop the cancer to a terminal stage. So normally I would be sent away and seen again in 6 weeks time after a blood test.
However, there was currently being conducted a world wide trial with men in my condition as the subjects. There is some evidence, but inconclusive so far, that overall the outcomes are better (i.e. survival rates in the medium and longer term) if men in my position are given radiotherapy from the outset once they have fully recovered from the surgery, in particular being fully continent. If I volunteer for this I would be randomly assigned to one of two treatment groups, one following the gold standard treatment as described above and the other given radiotherapy as soon as fully recovered from surgery. The issue here is that in practice many men would be given radiotherapy and suffer the consequences of side effects unnecessarily. On the other hand, 50% men who go onto surveillance end up having radiotherapy anyway and would have been better of having it much earlier while they were younger and the disease less advanced. Only time will tell which group will have the better outcomes in terms of 5, 10, 15 and 20 year survival rates. I am interested in joining the trial but will need to think about it more. If I am allocated to the PSA monitoring group, this is what would normally have happened anyway. If I eventually have to have radiotherapy I will probably regret I wasn’t allocated to the radiotherapy group and had it straight away. If I’m allocated to the radiotherapy group I will have 4 solid weeks of daily radiation treatment at St. James Hospital the other side of Leeds and suffer the side effects unbeknown to me entirely unnecessarily. I should have another appointment to discuss this with Mr Singh in the next 2 or 3 weeks and then, if I accept participation in the trial, I will have to see the radiologist Dr. Owen to sign the consent forms. Only then will I be allocated to the observation or radiotherapy group. If I end up in the radiotherapy group I will get the treatment in the New Year. If I’m in the monitored group I could end up having radiotherapy anytime for the New Year and in the years beyond, or perhaps never. Lots to think about.
In the meantime I have recently read a report that says that over 50% of prostate cancers are found to be, after removal, significantly more aggressive than had been determined by the biopsies. David told me, when I brought it up with him as this was the case for me, that this had been well known for some time and that the measuring of biopsy samples was well known to be unreliable and usually erred on the optimistic side. I don’t remember this ever being mentioned to me before and it may have made a difference to me opting to go onto active surveillance when the first biopsy results came through. Although this was my decision I was told afterwards that this had in fact been the recommendation of the interdisciplinary group. Now, with hindsight, this looks to ave been the wrong decision and I should have had my prostate removed last September at the earliest opportunity.