Prostate CA: Sy grows a 'tache and KF grows half a beard

[Giniw]

[dapinky]

Great to hear, but it is always a bit worrying whilst waiting for the news.

[GeoffSmith]

So… we've just arrived back from Spain and I'm now mentally and physically prepared (walked 200km last month and lost 3kg) for a radical prostatectomy on the 16th. Having been on active surveillance since 2019 and plotted my PSA rising gradually from 9.5 to 19.3, things took a turn for the worse and hit 27.0 in July and 35.9 in October. I had a PSMA PET scan which has confirmed that it is still contained, but the little bugger has obviously got more aggressive and needs to come out asap. Other than a slow flow, I have had no symptoms that would get me to book an appointment with the GP so I owe a huge debt of gratitude to DaveT who badgered those of us 'of a certain age' to ask a doctor to stick their finger up our bottoms. The supreme irony I have just realised is that Dave died 5 years ago today. Thanks for everything you Scouse git.

[Steve A]

A loverly man, sadly missed but definitely not forgotten.

[woody]

Best of luck Geoff,
Coming up to 5 years now since I had mine removed, and everyting is ok.
My PSA results were only around 4 before my Doctor sent me to see a Consultant at Nottingham City Hospital.
I have twice yearly PSA tests, and they are around the -.01 mark, so no problems.
The operation only takes a day, and incontenance, erection problems only last a few months.
They did a biopsy on my prostate after removal, and found the cancer was confined to the centre, and had not spread to the edges of the prostate, where the danger is of cancer cells getting into the blood, and from there into the bones, and organs.
The worst part of the operation is the injection into the base of the spine before they take you into Theatre, I had a new Australian Doctor who could not place the needle correctly, and it was painful. The anasthetic works quickly, and I fell into the arms of a nurse, who was standing in front of me.
You will wake up with a urether fitted, and a large bag attached. This is removed about 2 weeks later, and you have to wear incontenance pads for a few months, but after that everything is back to normal.
All the best
Cheers,
Woody

[GeoffSmith]

Thanks for the update Woody. That's good to hear and I'm mentally prepared for it, even though they have recommended I don't have the nerve-sparing option. Recovery may be longer, but some research does suggest it is more blood flow related than nerve damage so I'm staying positive.
I may have a problem with the lumbar puncture - my spinal fusion (in 1980) was L4, L5, S1 which is where they want to go in so it may be impossible. At least they have got me in early (7 o'clock) to see what they can do.
Going back to my fusion experience, I was left with a large area of my lower back with no feeling but that came back over time so I'm hoping I can do the same with the prostate nerves. Hell, if I can grow a heart bypass, I should be able to do a simple nerve reconnection!

[dapinky]

I found the lumbar puncture to be the most mentally traumatic part of my whole experience - and, like many such things, when it came to it, there were no issues at all. Everyone had told me to expect all sorts of things, but it just went in okay and off we went.
I didn't even use the 'pump' thing for extra pain relief as I didn't get much pain afterwards, and just a little discomfort.

Hoping it all goes well for you.

[GeoffSmith]

The myelogram I had before my fusion was pretty traumatic.

Anyway, I don't necessarily fully believe the reassurances about pain levels coming from the bloke who rode his bike to hospital with his foot on back to front…

[Steve A]

It sounds like you've tracked your symptoms perfectly Geoff, and are getting yourself sorted out in good time, all the very best to you.

[GeoffSmith]

Thanks Steve.

If anything, I left it a bit late - I had looked at HIFU (High Intensity Focused Ultrasound) when I was diagnosed in 2019 but there wasn't any data on outcomes as it was comparatively new. There is now and I consulted one of the main men (Prof. Hashim Ahmed) privately but because my PSA was above 20 and didn't reduce after antibiotics (it could have been high due to infection) it was ruled out. I would recommend looking at HIFU as an option as the treatment is less invasive, has few side effects, can be repeated if it is not fully successful and a radical prostatectomy can still be performed.

[dapinky]

The myelogram I had before my fusion was pretty traumatic.

Anyway, I don't necessarily fully believe the reassurances about pain levels coming from the bloke who rode his bike to hospital with his foot on back to front…

Well, okay, maybe I have an odd pain threshold, but after 3 hours on the bike, I had definitely had enough....... my arse was knackered as I couldn't lift off the saddle so felt every bump in the road - and there are plenty of those in Vietnamese national parks!!!!!

[Rambo]

Best wishes for your treatment and a speedy recovery Geoff

[GeoffSmith]

Thanks Mark.

[TrevorB]

Geoff, it's fantastic and courageous of you to share this with us. There are a number of us been through the uncomfortable bottom process to check things out. I have been a lucky one and was found to be ok despite the shadow on MRI which prompted the taking of samples for diagnosis.
I wish you Best Wishes for your operation and will follow the progress with interest.
Trevor

[GeoffSmith]

Trevor, I am just trying to continue Dave's good work and I have absolutely no problem about sharing.

I now know a few people who are on the early stages of the journey that Dave went on after metastasising to the bones and although they remain positive, it is very painful and debilitating.

I now understand that the excuse that the GP gave me for not having a PSA test 10+ years ago was probably the right one at the time. The PSA has large error bars (and mine has certainly fluctuated by about ±2 over the years) and a figure of over 4 triggered the next stage of investigations: this used to be a biopsy per rectum which carried a very high risk of sepsis which then went on to kill a lot of people. Around 20% of PSA tests gave a false positive so testing was essentially killing more people than it was saving.

Now it is very different: MRI scanners have been adapted specifically to look at the prostate so the next stage of investigation is now an MRI scan. Once the 20% false positives have been spared any further investigation, a biopsy is performed but because the location of the suspected cancer is known from the scan, the biopsy can be targeted with needles inserted from clean skin, thereby virtually eliminating the risk of sepsis. It's still not pleasant (I've had two) but a lot lower risk than 10 years ago and if your GP refuses to test you then press him on why - I go walking with a retired GP in Spain and a lot of older GPs are still stuck in the past.

[GeoffSmith]

Just 24 hours after I went down for surgery on Monday lunchtime, I was discharged with 6 small marks on my stomach and no prostate, walked to the carpark and came home in high sprits with little pain, although that was probably due to the tail end of the painkillers they'd been pumping into me. Yesterday was pretty grim, everything ached and I watched the adverts on afternoon TV with renewed interest as I couldn't get out of the chair but I'm a lot better today. The only minor inconvenience is having to drink (and dispose of) at least 2 litres of water every day.

[dapinky]

Compare the hospital stays these days to how they were a couple of decades ago..... you'd have been in for 10 days or more.

I found that the recovery time after the keyhole surgery was actually worse than the 'mainstream' open surgery, and I was ill prepared for that side of things.

Still, all sound positive, and as I say, any anaesthetic that you wake up from is a good result really.... if only my chloroform victims felt the same way.

[Fredjohn]

Wishing you a speedy recovery Geoff, and a Merry Xmas.
Swap the water for beer!

[GeoffSmith]

Thanks John but I'll hold off on the celebrations until I get the first PSA test result towards the end of January. Anyway, I went on a strict diet/exercise regime when I as told it needed surgery - we went back to Spain and I walked 200km and lost over 5kg in 3 weeks and feel in great shape, so I'll not spoil it just yet.

I'm absolutely amazed at the progress. I had a good long sleep last night and felt ready for a walk today but the wind and rain put paid to that plan.

[GeoffSmith]

Physically I've been making great progress and it was good to get a bit of sun and decent walking in Spain, but the nurse rang last Friday and left me a bit concerned as she said the cancer was detected 'at the margins' which I later found out to mean within 0.1mm of the removed tissue but not in the lymph nodes. Consequently, I've been a bit on edge but had a PSA yesterday and the result is that the levels are undetectable so all is good. Time for some Cava!

PS do not partake in vigorous walking when you've got a catheter - internal chaffing is not pleasant.