Where to begin?
With a sex scene of course, like an episode of The Sweeney!
So it's around 2006, which would make me 38 and I'm having drunken sex with a lady when I feel a sharp pain in my cock and call a halt to proceedings ouch! It's a bit sore for a few weeks and then I notice it's starting to look a bit crooked, a few weeks later and it's so crooked I can't bear to look at it, but after seeing a specialist and several months of healing and prescription Viagra things return to something like normal.
Fast Forward 18 years and due to the injury and the ageing process I decide it's time to seek help for ED and an appointment is made through my GP to see a Urologist at a local private hospital.
The appointment goes well and he suggests I take Cialis daily. He also organises blood tests.
I think no more of it until a week later when I get a call from his secretary one morning and she explains he needs to see me urgently, by now of course the alarm bells are ringing and as I'm driving over all sorts of thoughts are flying through my mind, including of course cancer, but surely not? I feel absolutely fine, play sport twice a week, drink moderately and have a healthy BMI.
A urine sample is taken on arrival and swiftly analysed so after a short wait he calls me through and explains that I have a PSA of 42 and as there is no sign of infection in the urine sample I very probably have cancer. A physical examination revealed a bump on the left side and after another blood sample was taken and I was told an urgent MRI scan would be booked I left the building in a state of shock.
When I got to the car I decided to ring my partner to arrange to meet her at home, but she sensed something was wrong and demanded I tell her what the problem was straight away, which I did.
It later transpired that she thought the dog must had died!
I didn't sleep well that night, but fortunately I didn't need to as I had an early morning flight to Alicante to catch and it was going to take more than cancer to stop me going to Benidorm!
The three days away gave my time to contemplate and come to terms with the situation. I did more walking and less drinking than usual, had a thoroughly pleasant time and sure enough when I got back I'd received an appointment for an MRI scan at the same hospital.
The scan wait was around 10 days and the day after the Urologist rang to say that it very much looked like cancer but didn't look to have spread to the lymph nodes or surrounding areas and his subsequent letter was noted T2c N0. What I didn't know at time was the significance of the lack of an M on the letter.
I still really don't know if the scan had been used to check for bone mets or even what the protocol is, but as I was told the cancer hadn't spread beyond the prostate I read this as relatively good news.
He also explained that they were very busy with biopsies but that he had spoken to a consultant at the BRI and he had agreed the referral.
As I'd got some definite news at this point I decided to speak to my mum, son and pregnant daughter about my condition. I put a positive spin on things and all took the news well.
I received the appointment for the biopsy and this took place 4 weeks after I was first told about the cancer, time seem to have stood still since my diagnosis but I'm guessing by NHS standards this timescale isn't too bad.
Pain thresholds are obviously different for everyone but I'm guessing by the look on the clinicians faces most people don't shriek, swear, arch their backs as if they've been possessed and stop breathing when they're subject to prostate biopsies! I thanked them and apologised once the pain had subsided, I was a bit sore on the long walk back to the car, but absolutely fine by that evening and could probably have played football. Parking is horrendous at the BRI there are rarely any spaces and the bays looked to have been marked out many years ago when cars were narrower and people not as fat and clumsy.
The MDT at the BRI meet to discuss cases on Mondays and I received a call on the Tuesday, he told me that my Gleason score was 7 and that I would need a bone scan and a PET to rule out metastasis before they could look at treatment options.
I'd pretty much resisted googling things until that point as I'd reasoned it would probably add to my anxiety rather than relieve it, but at this juncture I decided to have a look online and realised that with a PSA of 42 and no confirmation of the situation re Mets in bones, my positive spin looked more like wishful thinking. That week my thoughts had become more morbid, every other advert and soap storyline on the TV seemed to be cancer related and I was thinking about funeral songs.
Then I received the phone call,,, I was a Grandad! I was ridiculously happy that day and when daughter and grandson arrived safely home the next day I got to hold him for the first time I was totally overwhelmed and shed a few tears, which took me by surprise as I genuinely couldn't recall the last time I'd done so, bugger I must be going soft in my old age!
Around this time I'd began reading some of the threads on this forum, I found them very informative but also inspiring I was particularly drawn to the posts by the contributors on the advanced cancer section who's dignity and courage shone through their posts, sadly I suspect many of them are no longer with us, but fortunately there words of wisdom are.
The PET passed without incident, the bone scan less so, I was the last appointment of the day and apparently the machine had been playing up all day, I noticed the machine had a Philips badge on it, at least it wasn't made by Sharp!
2 software reboots and 90 minutes later and we were all done. This took place on the Monday 4th March and I'd already been booked an appointment with a consultant urologist on Thursday 7th, the radiologist was aware of this and assured me the scan would assessed in time for the appointment.
I'd decided to ask my daughter to attend the appointment with me, she's very calm and it gave us a chance for a good chat on the way there,
The appointment was at St Luke's, parking is better there as is the cafe. We turned up a bit early and sat in the waiting area which was quite busy so I was a bit surprised to hear my name called out straight away, I was given forms to fill in regarding ED and bladder function and directed towards some weighing scales and a height measuring stand and debated with myself, my daughter, the clinician and another bloke who was waiting whether taking my shoes would increase or decrease my BMI, in the end I left them on and it came in at 25.1, so despite my earlier assertion that I have a healthy BMI I'm actually marginally overweight!
We entered the consultants room and following the introductions the surgeon informed me that he believed I was suitable for RP.
“So I don't have bone metastasis?” I asked
“No” he said and carried on in a matter of fact way. I squeezed me daughters hand and we exchange a smile of relief. At times I think some of the clinicians struggle to put themselves into the position of patients as I think anyone who'd found themselves in a similar position to mine would have been very nervous attending that appointment and hugely relieved to hear that there had been no indication of spread, obviously it's not quite as simple as that as there could be cancer that hasn't shown up, but for now I'll take it as good news.
In total it's taken 7 weeks from discovering I have probable cancer to a meeting where a treatment was offered and he estimated it would be 5 weeks before I was scheduled for surgery. I have a telephone appointment with an Oncologist in 2 weeks time and am hoping he will have put together an RT/HT option, like many I'm not sure which route to take at the moment.
The MDT assessed it as Left T3a, as opposed to the initial T2c, I'm guessing that this is just a difference of opinion and that's its a marginal call and Gleason score left target was 7 (4+3) 3/3 50%
I got a phone call yesterday and was told I'll be scheduled for a PMSA scan, fair enough, we need an accurate diagnosis before proceeding with any treatment, but it feels like I've twice been told there's no spread and subsequently been scheduled for more sensitive scans to look for it, which seems rather cruel, why not do the PMSA earlier?