Posting this on here in the hope it helps others considering RARP
A bit of preface - I was diagnosed in Nov 2021, with a PSA 5.8, Gleason 3+4, tumour contained within prostate. Caught early, and decided on RARP as the safest simplest way forward. I have private health insurance so could choose my surgeon - this was a bit of a pandora’s box but I am really pleased with my choice and outcome. See
https://community.prostatecanceruk.org/posts/t27774-Retzius-Sparing-RARP---Which-Surgeon
For what its worth I went with the same surgeon as Jeremys and Elaine4878's OH
I must say I was very lucky, there are plenty of stories on here of people less fortunate. This diary is not intended as a boast, simply as a positive story, an illustration that RARP can be straightforward and not to be feared. That said, it helped that I was made well aware of the possible pitfalls, that way my expectations were quite low so a good outcome was a bonus, and I wouldn’t have been too upset if things hadn’t gone as smoothly.
I'm inclined to credit my surgeon with my good outcome, he did a fabulous job, however I suspect that I would have been fine with the NHS, maybe a bit slower to achieve continence but otherwise I’m sure they would have done a sterling job.
My op took place 28th Jan 22 in the private London Bridge Hospital wing at the top of the new cancer building at Guys, an impressive place, and reassuring to know they had the full Guy’s facilities available should something go wrong.
I was in a private room with a TV, so I took a chromecast so I could watch whatever I wanted while recuperating. Seems a minor detail but it really helped distract me from discomforts. I set this up before going down for the op - there is no way I could set it up after, for at least 24 hours after op.
The op went very smoothly. I opted for the spinal local, which makes you more comfortable for a few hours after the op. The spinal injection was easy, they used a skin numbing spray then just a slight prick. Then I laid back, they fed the general into my drip, and off I went. Next thing I’m waking up in post-op, around 3 hours later.
Surgeon came in to see me, and let me know all went well. Good negative margins (they have NeuroSAFE), and he managed to save nerves on both sides (we thought the right side nerves would go cos tumour was right beside them). He does retzius-sparing surgery, and was optimistic about my continence outcome. Surprisingly I remember that conversation, and a brief call I had with my partner (most people don’t remember that bit).
I was taken back to my room after an hour or two. I stayed in bed til the next morning. Catheter was fitted during the op, and I had a large bed bag attached, which the nurse emptied every few hours. I was fed a light liquid diet, thin soup etc. I didn’t feel hungry, in fact I felt surprisingly comfortable due to spinal local.
They warned me I wouldn’t sleep the first night, but I actually got a few hours kip. The rest was spent watching netflix (just mind-dead feel-good movies). I felt a bit sore, but no real pain. They kept me dosed up on painkillers
In the morning, after a light breakfast, they switched my catheter to a leg bag, and got me out of bed. Bit tricky without straining stomach muscles, and I felt pretty tender and wobbly, but all good. I pottered around my room, back to bed for rest, then up and out for a wander around the corridors. Took it very gently to avoid inflaming my various wounds, but all good. I could have gone home that afternoon but it felt too soon, so I opted to stay in for a second night, no rush. Still on a light diet. Managed a small poo that evening (see my notes below about constipation).
Only downside that first day was I was itching all over, due to the anaesthetic. Apparently this affects around 1 in 20. They gave me some antihistamines and it wasn’t too bad, and went away on day 2. I didn’t sleep well the second night, felt restless and itchy, but I just chilled out with netflix and was fine.
Day 2 feeling much better. Still tender and sore, but up and about. Getting used to catheter, no problems there (see notes below). I was discharged and went home - picked up by friends, 20min car journey, wearing PJ bottoms for comfort, no problems.
The next few days went smoothly. I slept well, and had a daily afternoon nap. I went out for a walk every day, starting with a slow 20 min walk on day 3, and building up to 1 hour walks by day 7. I had no problems popping to the shops, and using a public loo (I used a cubicle so I could drop my PJs to access the bag). I have to say that by about day 5 I was feeling great, really amazed at how quickly I recovered. I had been warned to take it gently and not lift anything over a kilo, and of course the catheter bag discouraged too much movement, otherwise I’d have been running about with glee!
A few particulars about that first week:-
Clothing - I bought various large sized PJ bottoms and joggers, but didn’t really need them. I really just needed two pairs of PJ bottoms, my normal size with elasticated waist. I lived in these for the first 10 days, including local walks and my trip to have the catheter out. Bit of an odd look but who cares. Day 10 I started wearing my normal jeans whenever I went out, and PJs around the house. I wore my normal pants (Next A-fronts), which are elasticated, and held pads and catheter tube in place nicely.
Painkillers - the spinal injection of local anaesthetic worked wonders, and I was surprisingly comfortable after the op. For the first 48 hours I took paracetamol and dihydrocodeine. There was a cockup on the second night, the nurse asked if I was in pain, I said no, so she stopped the painkillers - woke up at 3am feeling quite uncomfortable so double-dropped paracetamol and codeine. Much better to just keep taking painkillers continuously. I took paracetamol and ibuprofen for the first week (alternate every 2 hours), worked well. After that the occasional paracetamol when I needed it, stopping completely by day 10.
Diet - they put me on a low-fibre diet for a few days before and after the op. White bread, conrnflakes, very limited fruit&veg etc. I found the purpose of this confusing until I googled it - it is a “low residue” diet, designed to minimise the amount of poo in your gut. But it makes you constipated (or it did me, I normally eat a lot of fibre) which is counter-intuitive as constipation is one of the biggest problems with this op. So I started on the laxatives just after I started the diet (see below). The diet also gave me blood sugar spikes (though I’m not diabetic, 38mmol), but I found it helped if I ate smaller amounts more often, with lots of snacking.
Constipation - this was one of my main concerns. Your gut goes to sleep for a day or two after the op, and can be difficult to get going again, and you really don’t want to strain for at least a week after the op. Also you don’t take much exercise for a few days after the op, which makes things worse (I’m normally pretty active). The low-fibre diet also made things worse - I was already constipated 2 days before the op. I took Movicol laxative twice a day from 2 days before op til now (a week after), plus a daily glass of prune juice. I started farting a few hours after the op (good sign), and had my first poo about 28 hours after the op. I was really nervous, and quite uncomfortable, but luckily the first poo was pretty soft, verging on diarrhoea, and I didn’t strain at all. Unfortunately the nurse, when I mentioned this, said I should stop the laxatives - big mistake. I blocked up for over a day, and ended up taking 4 Movicol in a row to get things moving again, which resulted in some rather urgent diarrhoea. However this time I kept taking the Movicol, twice a day (with breakfast and dinner), and things settled down nicely to a soft regular stool, twice a day to begin with. Verging on diarrhoea again but far preferable to constipation and straining. I’m still doing this a week later, often pooing twice a day, but it keeps it easy. (Update - from day 10 I dropped to one Movicol with the evening meal)
Hydration - I really went for it and it paid off. They suggest 3 litres a day for 3 days before and after the op. I mainly drank water, with the occasional herbal tea (I love Rooibos with a dab of honey). I used a 1 litre water bottle so I could keep tabs. I normally drink quite a lot of tea but I avoided this as caffeine can irritate the bladder. This kept my pee nice and clear, and helped flush out blood and scabs from my bladder, which you get for a few days after the op. After day 3 I backed off to around 2 litres plus Herbals etc. I also had a glass of cranberry juice daily to help avoid bladder infections.
Catheter - I’ve had one before so knew what to expect, but found it quite easy. Leg bag in the day and bigger floor bag at night. Dabs of vaseline on tip of penis to stop it chafing. Had an incident on night 4, when the tube to the floor bag got wrapped round my leg and came unplugged, woke up to a warm wet sensation! Bed pad saved the mattress, just needed clean PJs and bed sheets. I took a bit more care with the tube after that, no more leaks. I used the normal leg straps for the leg bag, which sat just above my knee. The top strap held the join between catheter and leg bag, and took most of the weight. It was a strong velcro strap with a sticky rubber strip on the inside, that stayed put pretty well, as it sat above the outward curve of my thigh muscles. The lower strap attached to the bag, and just stopped it flapping around. It tended to slide down my thigh, but I found a trick of looping it over the top strap at the back of my leg, to hold it up. They also offered me a sort of elasticated mesh sleeve to hold the bag against the leg, but I found it just slid down my leg as I walked. When emptying the leg bag I found it easier to pull down my PJs, rather than trying to lift the PJ leg to reach the valve. Stomach quite tender, so bending down is not easy.
I had the catheter out on day 7, known as TWOC (trial without catheter), and they removed metal staples from my scars. Went really well. Nurse asked me to take deep breath and breathe out as she pulled it out. Slight twinge but no real pain, came out smoothly. I expected instant leakage but just had a small dribble. They then monitored my first three wees. I drank plenty of water before I went in, so had first wee within the hour. The sensation of needing a wee came on quite normally, bladder control felt surprisingly normal, and I passed about 200ml. It felt a bit sore as I started weeing, but all good, and no blood (though they said blood is quite common for first few wees). Main problem was keeping aim, as it came out pretty fast! Good flow means the join between urethra and bladder is healthy. After third wee they scanned my bladder to check for retention - I had 130ml which isn’t great (they expect under 100ml), so they asked me to stay for a 4th wee, after which I still had 140ml retention. They decided it was simply because my bladder had stretched due to retention over the last year or so (my surgeon commented it looked big on my MRI scans). Not a major problem, though increases probability of bladder infections.
Since having the catheter out I have been completely continent, which way exceeded my expectations. Just luck and a good surgeon I guess. He did comment that I had a fairly good MUL (size of remaining urinary sphincter) which helps. I also really got into pelvic floor and core exercises, starting 2 months before op, which probably helped. I used Tena level 2 pads for the first few days & nights, but they stayed completely dry so I stopped using them. I bought some level 4 pants, but didn’t need them. For the bed I used a Vivactive washable 60x60cm bed pad under the sheet, handy when I had the catheter tube leakage but otherwise just a safeguard. I bought a bunch of disposable bed pads but didn’t need them.
Regards erections, I’ve not had one yet but it is early days. I’m taking a low dose (5mg) of Tadalafil to encourage blood flow, but too low a dose to cause an erection. They suggest I try higher doses and start using a vacuum device soon. Fingers crossed (though to be honest I’m just happy to be cancer-free and continent, anything else is a bonus). And regards penis size, it did rather disappear around day 4 as the internal swelling went down, but since I started taking Tadalafil on day 7 (after catheter removed) it has returned more or less to normal size.
I’m now on day 12, and normal life is returning. I’m still a bit tender, and avoid lifting weights or straining. I’m still off work and taking afternoon naps, just to aid recovery, but I could handle a desk job now if I needed to.
Just spoken to my surgeon and he is happy with everything. Lets hope things continue this way. Quite remarkable, the wonders of modern surgery!