So, It’s been a while, almost exactly a year. Had a fairly intense conversation with a close friend last night. The intensity was about Steve Jobs and Apple, not my prostate, but that’s another story. Anyway during our conflab I was berated for not adding anything to my blog. In essence he was telling me off for leaving my story on another cliff edge.
As it happens I am approaching another significant milestone on this journey and by the time I finish this we’ll be at another cliff edge.
So here we go.
Just before Christmas I had a meet with my consultant. Well one of them, seems I have three and they are not as entertaining as the Three Stooges, must be the subject matter. Anyway they take it in turns to see me.
I duly present myself at Urology Reception and after a short wait in the “General” waiting area we are ushered through to sit in a holding pattern outside the consultation rooms. I have been here a few times now and the wall opposite the seats isn’t getting any more interesting. Pride of place is given to a cross-sectional view of the male anatomy.
I’m not sure if this image is the one I get to stare at, but it’s a close match. I keep expecting some hints on the prime cuts and interesting ways to cook them.
So, seated in the consultation room, I am informed that the Template Biopsy hasn’t disclosed any new frightening discoveries. In fact this latest biopsy pretty much supports the findings of the original TRUS (Trans Rectal Ultra Sound)(See Part 1 above). Basically my cancer is quite small, isn’t raging doesn’t on the face of it appear to be life threatening. In my words we are effectively back at square one. That is, the situation is the same as it was around 18 months before.
Obviously, I was quite relieved and commented to the consultant that I had fully expected to have to make a decision following the biopsy results. He was quite interested to know what my decision was going to be. I explained that I would probably have opted for the operation, prostate removal. My reasons being that I would be able to fall back on radiotherapy if the cancer reappeared. Once you have had radiotherapy surgery really isn’t an option.
The consultants response to this was to give me a fairly forceful lecture on the possible side effects to the surgical option. Urine leakage and erectile dysfunction being the two headline leaders. He hammered home what a life changing thing incontinence can be and that I shouldn’t go into surgery lightly. For a surgeon he was doing a good job of selling radiotherapy to me. He then went on to explain to me what a difficult operation it is to remove the prostate.
Apparently my weight was a big consideration here and it was at this point he asked me to stand up so he could lift my shirt and demonstrate. He explained that for keyhole surgery, even though this isn’t abdominal surgery, the entry point is through the abdomen. Having entered the belly they then have to turn due south and head deep into the pelvic region. He pointed out that as I was a big lad, with a significant “food baby”, the journey through my entrails would be a long one. That he wouldn’t just have to negotiate his way past all the tubing but would probably have to burrow through extra fat. A new twist was that for the operation I would be tilted head down, meaning that all my fat encrusted viscera would slop up towards my lungs to press against my diaphragm. Wasn’t this a good thing I enquired, won’t this clear the way and make the operation easier. Nope, this migration makes life difficult for the anaesthetist. Yards of tubing heading north makes it difficult to keep the lungs full of oxygen. After this I wasn’t sure if he was bigging up his role or trying to dissuade me from having the surgery.
After all he is a surgeon, isn’t that his raison d’être. To be fair he did pretty much say that himself, that he just wanted me to be clear that surgery is not the easy option, nor is it without risks. I suppose I could have suggested that he had misjudged his audience since I was pretty well read up on the subject. I don’t let anyone go rummaging around my insides without finding out what they are supposed to be doing and what the pros and cons are.
Carry On Regardless
So, having come to an understanding I opted to carry on with the Active Surveillance with a view to probably having a scan and/or another biopsy. I must have given the impression that I wasn’t wholly convinced by his lecture and he was rather keen that I see one of his colleagues for an alternative view. This I agreed to do and we shook hands and parted company.
Approximately a month later I had an appointment with consultant number three. We discussed the biopsy results, the options open to me and the pitfalls of the various treatments. Once again it was agreed that I should carry on with the Active Surveillance. Part of the Active Surveillance regime is the taking of bloods on a regular basis, every 3 to 4 months, to monitor PSA levels.
PSA is not viewed as an accurate indicator of the presence of cancer but once diagnosis is confirmed the PSA can give an indication of change.
And so it was I found myself once again at the QA, being given an opportunity to brush up my male anatomy and finally sitting in one of the consultation rooms. No consultant this time as I was seeing the Nurse Specialist. She talked me through my history and pointed out that my PSA levels had gone up. Previous readings had plateaued but the general trend was up. Her advice, based on 18 years of experience, and taking into account my age, she was of the opinion that it was time to take action. This was a contrast to the position taken by the consultants who were prepared to let me continue with the Active Surveillance. We kicked the subject around and it was agreed that I should go for a MRI scan and that I should then see the consultant to discuss the results.
If it’s good for nothing else, prostate cancer is introducing me to some new life experiences. TRUS, Template Biopsy and now an MRI. Everyone that I have spoken to, that has had an MRI, have said that they didn’t enjoy the experience. I wouldn’t say that I enjoyed it either but I didn’t actively dislike it either. I did, however, find it interesting. It’s noisy and a bit claustrophobic especially when you are my size. As your lower extremities disappear into the centre of the doughnut the hole begins to look a bit small. And when the table moves further in and your belly and chest further fill the available, visible, free space I suspect that the experience is similar to sausage meat being transported towards the sausage skin waiting on the tube at the outlet on the mincer. Another interesting thing I noticed was that as the MRI is clacking and clanking away the muscles in my left leg started to move in time with the noises. Not twitches as such, just a slight pull. Similarly, my wedding ring was also pulsing in time. These sensations varied with the tone of the MRI. Eventually it was all over and I left the QA to await the call to go and discuss the results.
Time moves on very quickly when you aren’t keeping an eye on it. Before I knew it I was back at the QA staring at that same wall with the same diagrams and posters. Still no recipes. And then into the consultation room.
Much to my surprise he told me that the results were really quite good. That is the MRI showed quite low levels of cancerous cells and that these cells do not appear to have moved onto other areas. All in all the MRI was pretty much repeating what the Template and TRUS biopsies had shown before. The only fly in the ointment was the steady upward trend of the PSA which didn’t seem to be echoing what the scan and biopsies were saying. Once upon a time doctors told you what was going to happen and then got on with it. In these PC times it’s all about patient choice. The trouble is the patient is necessary best qualified to make the decisions. Even if they have all the facts in front of the. And that’s the dilemma that i was confronted with.
I had the diagnostic results all laid out before me. I had all the options for treatment defined. I just had to make a decision.Anyone who knows me will know that I can’t make a decision when I’m in a restaurant with menu in hand. And then it doesn’t really have life changing implications if I make the wrong decision. Here there was no truly wrong decision to be made but the implications were momentous.
In the end I decided to go away and think on it. Subconsciously I probably knew what my decision was, but mentally I wasn’t ready to say it. I pondered for several weeks and then contacted the QA and told them to put me on the waiting list for surgery. The consultant had told me it would probably be a couple of months before I got a surgical appointment so I was looking at December / January.
Appointments & Disappointments
A couple of weeks ago, on a Tuesday, I got a call informing me that my appointment had been made. It was for the following Friday. Three days notice. Unfortunately I had other plans. The proposed day of the op we were due to go away over night and a week later we were heading up to Merseyside for a few days to spend time with family. Hotels had been booked and paid for and I wasn’t prepared to pass on those. The young lady tried to persuade me otherwise, telling me that “it’s really important that I had this operation”.
I wondered who she thought she was talking to. Wondered why she might think that I didn’t know the importance of the surgery. After all, I’m the one carrying the infected walnut around inside me. I’m the one going through the various biopsies, scans and blood tests. I’m the one who is being nagged by various family members to get on and have it done. She did, does, sound very young.
So, disappointed, she said she would call me again when they had another appointment for me. And that call came yesterday.
I have a busy week, next week. Monday I meet with the consultant. Wednesday I go for my pre-op meeting to see if I am fit to have the op. and Friday at 07:00 I have to present myself at Theatre reception.
I’ll let you know how I get on.