Where to start? “Let’s start at the very beginning, a very good place to start”, sang Julie Andrews and who am I to disagree with this national icon. In November 2022 at the age of 42 I found myself in a swish clinic having been offered a free medical in return for some honest feedback. Would I be allergic to milk or wheat? Do I drink too much and can they tell? Am I overweight or fit enough for my age? These were the questions doing the rounds in my mind. I was fit(ish) and had no problems and expected a largely clear bill of health. There is no history of cancer in my family so this was far from the forefront of my mind. Fast forward two weeks later and I had a call from the clinic saying I had a high PSA reading (what’s that!?). Must be a mistake surely but after a second test and another 10.8 reading the GP suggested a referral to a Urologist.
Having the fortune of private medical insurance I was on the BUPA website looking for a Urologist and had an appointment for 5 days later. He was positive and did a physical examination he also talked me through the next steps of MRI then possibly a Biopsy. With a reading over 10 but no other signs the risk is around 25% of cancer he said. I still felt very confident it was nothing but went for the MRI as suggested.
Christmas was now creeping up and I didn’t want it to ruin Christmas but after a few calls I was able to book an appointment before Christmas for an MRI. For those interested the MRI is a painless scan taken in a tube like structure. I arrived at the hospital and was taken to a changing room to remove my clothes and put on a hospital gown. The actual scan was quite long and took an hour but I was able to listen to the radio to drown out the noise. You had to stay very still and for more claustrophobic people I could see it might not be very comfortable but I just shut my eyes and meditated. Throughout the process the waiting has always been the worst part. The next day the news was not good they had some concerns from the scan so they felt it would make sense to do a biopsy. I booked a Biopsy with my urologist for just before new year. Not great to have it hanging over me but at least it felt a step forward.
Thankfully I had not read up too much about the biopsy process and was distracted by young children and Christmas. To be blunt the biopsy was not nice. On arrival you are transferred to a changing room where you put on some paper underwear and a hospital gown. You then enter an operating theatre space with a chair that looks much like a birthing chair. The Urologist and nurse treat you with the utmost dignity but to be honest there is little dignity in local anaesthetic injections into your prostate, a camera up your jacksie and samples being cut out in an uncomfortable manner. By the time I got home I felt quite violated, fairly uncomfortable and the side affects of blood in your urine and stools was quite unnerving.
I got a week in the sun which was a great distraction and diversion from the dreaded wait. Biopsys at least give clear answers and my result was it was cancer. Mine was 95% Grade 3 and 5% grade 4 which on the Gleason Scale is 3+4 and localised as far as my Urologist could tell.
So what to do next? My Urologist suggested an Oncologist for Radiotherapy or a Surgeon for Prostatectomy. But which one? By this time I had a lot of faith in my Urologist and his opinion. “There are advantages and disadvantages to both” he said. “Ok gun to your head and you were advising your 42-year-old brother who happened to be identical to me in every way?” “Radical prostatectomy”. 1-0 to RP so far. His referral led to 2 meetings the next week. At least I was now done with the tests. Oh no. The oncologist suggested a PET CT Scan. I had a wobble. Was this really necessary? Hadn’t I been poked, prodded and scanned enough? and so far a test just preceded bad news and I had had enough bad news. I agreed because they could fit me in before the appointment. So what is a PET CT Scan? Well in this case it involved arriving at a clinic where a ‘radioactive dye’ was injected into me and then a 45-60 minute wait for it to travel around your system before you have a 25 minute scan. Completely painless and no side effects. It shows any spread in the cancer. Thankfully none showed up.
The next day was my meeting with the surgeon. A no-nonsense reassuring consultant who I had an immediate rapport with. I should have suggested earlier but these appointments are very intense and information filled and seem to go very quickly therefore prepare any questions you have in advance, take in a note book and if possible take someone with you to have another perspective. Sometimes we only hear what we want/expect rather than the reality. A lot was covered in this meeting but in essence it was his strong recommendation to go for the surgery. Why? 1. The cancer was likely localised and therefore ‘curable’ only with surgery ie no follow up treatments as well as ‘nerve sparing’. 2. My young age. Radiotherapy is excellent but unfortunately very long term effects include cancer risks to other areas near the prostate. It is also difficult to do multiple times so it is using up a significant part of your arsenal. Prostate removal then radiotherapy is much easier. 3. My good health and therefore likely good recovery with hopefully minimal side effects. 2-0 to RP.
The next day I visited the Oncologist. Again, another excellent consultant who was incredibly informative. Whilst giving me all the advantages and disadvantages of radiotherapy it was made clear that they also felt that the right approach for me was RP 3-0 and the hat trick. For those considering radiotherapy I was incredibly impressed with how far radiotherapy had come and especially the MR-Linac treatment. Had I been 30 years older the decision would have been far more difficult.
D-day or should I say P-Day
On arrival at the hospital we were shown through to a very practical room and I changed into the hospital gown. We were visited by the surgeon and the anaesthetist and went through a list of questions before heading down to the operating theatre. I lay on the bed in a small windowless room while the anaesthetist went through some questions with his assistant. The lights were then turned out. The surgery took 2 hours. On waking I had a catheter but otherwise felt surprisingly well. The operation had left 5 holes in my belly one of which was larger near my belly button. This was for the camera and also prostate removal. I had a visit from several nurses and a dressing on one wound that was leaking. I think the anaesthetic wore off around 9 hours after the op and I started to have quite severe discomfort. I only had paracetomal and ibruprofen which kept the pain ok. I stopped drinking enough so the nurse put me on a night drip and due to the pain my breathing was very shallow so they put me on oxygen to avoid infection. I had a terrible nights sleep and slept in fits of 10 minutes before the pain woke me. I saw every hour till 4.30am when I got 1.5hours sleep.
Day 2
I had several visits including how to look after the catheter and the do’s and don’ts after surgery. My intention had always been to stay only one night and so around lunchtime and with some painkillers and laxatives I was able to leave. I also had a catheter leg bag and a night bag. Lastly I had a tube of anaesthetic gel in case the catheter rubbed. The journey home was fairly uncomfortable feeling every drain cover and pothole but we didn’t stop in the hour it took and I was able to sit at home. The night was not very enjoyable but I did get fitful sleep. I am aware of when I can take painkillers and do.
Day 3
In the morning I had a shower and headed down later than usual but not very late. Much of the day was spent sat in a chair, lying on a sofa, or resting on the bed with sporadic short but painful walks. Keeping active is hard but really important.
Day 4-9
Much the same except more time stood up, from Day 4 I started to go outside and go for a walk for 15 minutes twice a day. I measured the distance I could get in 8 minutes before walking back which initially was barely 200m but by day 9 I was doing just over 1km in total.
Day 10
I had not enjoyed having a catheter and was very pleased this was catheter removal day. I had been warned it could take all day. Initially I was taken to a room where I lay down while they removed the catheter. The removal was not comfortable but very quick. Afterwards I was told to drink 2x150ml glasses of water then 150ml glass every half hour. Within half an hour I was able to do a small wee then two further much large ones in the following 1.5hrs. After each they scanned me to make sure I was emptying my bladder and I was out by 11.30am. Such a relief and although I used a pad I didn’t need it at all.
Day 11-14
I am starting to sleep on one side again, the other is still quite tender and the catheter removal has given me a new lease of life. On day 12 I did my first longer walk of 40 minutes. Waterworks work well though there is still pain when I pee probably because the catheter inflamed the urethra. On day 15 I did a longer walk without much effort.
Weeks 2-5
Getting better everyday. After 2-3 weeks there is a meeting with your consultant to discuss any outstanding issues. My outstanding issues were minor but include a possible urinary tract infection so was given a prescription for some preventative antibiotics but otherwise mostly good. We also looked at the prostate results which showed extensive but hopefully localised cancer and discussed options if it turned out not to be all out – radiotherapy.
I had the opportunity to meet a specialist physio for the incontinence but I have been exceptionally lucky and this has not been a problem for me. I started my pelvic floor exercises 2 weeks before the op and have carried on with them using the app ‘squeezy men’. I think personally this has helped a lot. In terms of the ED it is early days but looking positive.
Week 5+
After 5 weeks I had a PSA test. I spent much of this week worrying about the result and both dreading and desperate to have my next appointment and find out the results. Thankfully my result was 0.05 and an expectation from the consultant that this was likely to drop further. Next test is set for 3 months.
I guess this takes me up to today. I think I will continue to worry about the PSA tests and I am aware that bad news could be around every corner but from where I was to today I would say I am 98% back to normal in terms of my recovery fully continent and largely without ED.
I wrote this as I have benefitted from other people sharing and hopefully my story will be helpful/comforting to at least one person. I have been exceptionally lucky to catch this early and have such amazing results. We are all different but for me the fear of spending the next 40 years incontinent and with significant ED really scared me and I hope it reassures some that they can be more optimistic about positive outcomes from a RP especially for younger men. My consultant said in his experience age played a significant role in a reduction in side-affects.
Most of the experiences I have read have been more challenging than mine and I am so impressed with the fortitude and optimism of both those going through it and their partners who play such an important role. I reiterate this is my story and advice given to me. It seems to me that the treatment of PC is an art not a science and as such the advice I received would perhaps not be universal.