That walnut sized organ: the Prostate

Water John wrote: »

Thanks for your courage in sharing this.

Thank you and the others for similar comments.

The reason for sharing is that I had zero symptoms and just got very lucky with a random VHI MOT initiated PSA test which my then GP would not have supported.

As I still have the sleep deprivation outlined in post 1, I was lying awake thinking about how I am going to deal with the urinary incontinence side effect.

You hear and read people say: My neighbour had the same done ten years ago and he is grand.

Well sorry guys and girls, it just ain't that simple.

I have two professional opinions on my desk right now as to what will happen tomorrow when the catheter is removed:

1: plumbing as normal, with some leakage risk when laughing, sneezing, coughing, exercising, (reading self build posts on boards)

2: Plan for worst and be rigorous about doing the pelvic floor exercises.

This is lifestyle changing surgery.

Things to consider, in random order:
Need for permanent day bag with full change of clothes.
Can I ever make a 45 minute presentation to an international conference?
What about events like rugby matches or concerts?
How to protect car seats and other seats in both my house and when I go visit?
What to do with the wet pads?
How to get back cycling, both in gym and on road?
Long car journeys, especially on motorways?

What happens at night? Will the badder give me any idea of being in need of emptying?
Just to put some math on this, when I was in the Beacon they made me measure the output so I know its a max of 750cc, usual about 600cc per fill.

The night bag, for the last 4 nights has averaged about 1,800cc between 10pm and 0800.

However, I normally don't get up at night so whats giving rise to three fills?

The surgery has changed the shape and location of the bladder so 750cc might never be achieved again.

The largest pads I can find have a rated absorbency of 516 cc, yep 516, so I don't know whats going to happen tomorrow night.

I will keep you updated as this aspect of the project is a real issue, which cannot be brushed under the carpet with a simple, you will be grand comment.

Keep well.

Ps, I know all theses issues have been solved before, by others for others, they just need to be solved for me by me.

cronin_j wrote: »

Jesus, I just read this from start to finish. To say this has been an eye opener wouldn't even cover it.

Thank you. If it gets somebody diagnosed early then its worth it.

The how is worth repeating.

The reason for sharing is that I had zero symptoms and just got very lucky with a random VHI medical insurance policy related MOT initiated PSA test which my then GP would not have supported.
I was not quite 62, with no family history and good longevity in the genes.

Just one comment upsetbf86, I would not agree I was proactive in this case.
I was 62, getting on with life and the VHI knocked!

The rest of your post is for another day, if ever.

One thing they don't tell you, pre-op, is that in general, when lying down on one's back, the urinary incontinence following prostate removal is a lot less of an issue than during the day.
What follows is based solely around my experience but it might help someone.

Preamble: the anatomy down there.
The pelvic floor muscles are like a hammock, and when homo sapiens is walking, these muscles support the lower intestines, bladder etc.

Therefore when lying down on one's back, the bladder is on top, with no pressure from the gut so at night it can just sit on top and wait to be filled by the kidneys.

What they told me when the catheter got taken out was that for about 10 days, when the bladder filled at night, the stitching would come under pressure a bit and cause pain just above the pubic bone.

That wakes you up and then its a case of managing what happens next: more of that later.

Wednesday night, the day the catheter was taken out the pain was pretty severe, but the intervening nights it is getting less and less.

Currently, I have cut back my liquid intake to about a 3rd of what it would be normally, [or should be, which is 30 ml/kg/24hrs], so normal would be for me about 2.7 litres

The pain arrives about every four hours and the tank is only holding 300-320 ml
So bed at 22:00, up at at 02:00 and 06:00 and a good bit of sleep in-between, which if you have been reading earlier has been in short supply these past 5 or 6 months.

Crucially, thus far, I have had no nocturnal deluges so am happy to go to bed.
[Yes I do wear a nighttime pad which catch some residual stuff but minor.]

If you read earlier, this was a concern in the post-op period while the catheter was in.

So night-time, and lying down are good places to be.

A lot of angst, perhaps angst solely of my doing, could have been avoided if this intel was available pre-op.

So how do I deal with the full tank: at the moment I have a plastic jug beside the bed and I use it.
I can shut the flow when I get up out of bed, or any horizontal position which is progress, however the post-op guidelines say thats not good to do long term and it can damage the bladder.

Part of the reason for using the jug is that right now, as a result of the nerve removal, there is little enough there to direct any flow: so using the long, waist high, or floor level troughs that feature sometimes in men's toilets are out,
likewise, I don't see urinals being of much use unless they are straddled.

Even standing over the toilet at home is not satisfactory.

As for the rest of the day, when standing, or sitting, or walking:
well, lets say it's a very frustrating work in progress.

However, having the lying down and especially the bedtime "comfort" is a big bonus compared to where I was , head-wise, 10 days ago.

ps: post the full repair of the stitching, I don't know what the at night, full tank trigger will be, thats for another day

Thought it might be encouraging for someone to know what is happening 5 weeks after surgery.

Pain: three pain items previously discussed still occurring so still on anti-inflammatories: morning, lunch, night.
None of it is at a mad level but still occurs.
The pelvic floor muscle pain is most pronounced if standing for several hours.

Daytime.
There is much improvement when getting up from sitting, I still need to leg it to the toilet but in most cases get there just in time. There is not much hardware to direct any flow with so I just use the jug: easier all round. The flow rate is not great, its better at night when the tank is fuller, but capacity is still c 300ml.


Uncontrollable peeing while walking still a problem.
However the walking has improved the control when sitting so ......

Night time.
Days are followed by the now normal night routine of up every four hours so happy nights!

Sneezing and coughing and lifting are still a problem.

Pints/Whiskey/Plumbing case study.

My best man / best friend came to see me from LA for 5 nights so we hit Galway for 3 nights.

Night one we had 2 pints of Guinness at dinner from 6pm to 8pm

We then had a walk around, with a few pit stops, and hit the pub again about 10pm, had two more pints and then retired at 11:30. I was dog tired after drive and no afternoon nap.

After 4 circuits of sleep/pain/pee, I decided to check the time: 1:30am, LOL:D

Next pain/pee circuit was at 5:30 so no complaints.

Next night did 4 pints craft cider over same time frame, pretty much same outcome.

Next night 4 more pints over same time frame, same outcome as first night.

As I said already, walking was a problem so I just put on the full adult nappies for those three days and it worked out fine.
Had a water proof seat cover in car and similar for hotel bed: however, no industrial accidents.

In addition, I had a bottle in the car for intermediate road-side pit stops as with the limited hardware, peeing through a windy gate is not a realist option and pulling off the road looking for some grotty toilet in a garage is just not feasible as once you get the need to go, it waits for neither man or beast!.

On his last night here, at home, we skulled an indeterminate amount of whiskey over about 6 hours. This has been a tradition when we meet pretty much every year since 1979 so nothing new there.

Not at all the same impact as the 2L of Guinness/cider, perhaps reduced liquid intake coupled with higher alcohol content led to some dehydration.

So to conclude, five weeks down range, progress is being made on containing the urinary incontinence.
Skulling pints and whiskey is back on the menu, as long as there is easy access to toilets, and it does not cause any issues at night: yes frequent sleep/pain/pee circuits but still doable as it is self inflicted.

1: thanks for all the kind words, I just dip in when updating.

So we had the post op medical review with the surgeon on Thursday.

before dealing with it, lets review the improvements since last post.

On the triple pain list:
pain while actuating peeing is gone 100% which means all well with stitching etc.
Night-time pain: still the same, up every 4 hours, with a bit more in the tank, maybe 400ml, this hot weather has made liquid intake a bit more.
Pelvic floor pain: only when I stand around for some hours, had a bbq/family party last week, had to take pain killers and sit down after two hours but not as bad as last time.
They were the first pain killers in two weeks.
Walking and leakage is becoming less of a problem.
So all in all, progress continues 2 months after surgery.

edit: however, why flow rate is 100%, the jug is still the receptacle of choice, I am a long way from the windy gate, if ever.

Medical Review.

Post Op review of surgery.
I had to bring a PSA test back with me and the result is the value is less than 0.1
This is regarded as being undetectable, there is a link below which explains all this.

He is happy with this and I am back in 4 months, it would normally be 6 months but he wants to work on the waterworks.

Re the waterworks, he is not happy that I am still on three pads a day, as well as the night time calls as I had no night time calls prior to surgery.
He thinks I am not doing enough of the pelvic floor exercises so I am back in 4 months for a review.
He also suggested I go see a physio for specific pelvic floor exercises that go beyond the simple "squeeze and breath" one.
[I have these exercise from before the op so I started them this morning, I had done none of them prior to this review]

I can resume the full range of exercise in the DCU gym but clearly not at the post op level: its whatever the body will take and not to overdo it.

He thinks there will be leakage in the gym for the next few weeks but again if I can deal with it then the exercise is okay, including cycling.

He also mentioned, again, the need to cut back on coffee, alcohol, fizzy drinks, but they are okay as long as the consequences are acceptable to me.
He added that a lot of all three would stop the bladder getting back to normal as quickly as it would without excessive tea,coffee, alcohol etc.

Also, interestingly, I asked about the reduced capacity post op: he said a lot of that can be psychological as when the pain comes you know that if you don't empty it will leak.
There is also an almost permanent sense of urgency to keep it empty.
He says this will improve if I gently push the pain barrier over time.

PSA levels post radical prostate surgery.
http://www.harvardprostateknowledge.org/how-to-handle-a-relapse-after-treatment-for-prostate-cancer

So whats with the Waiting for the hammer to fall.

This is off the web, from reputable sites but its, at this stage my own work.

Very simply, based on the post-op pathology results and the pre-op PSA levels, there are statistics out there for two things:

PROBABILITY OF REMAINING RECURRENCE-FREE AFTER SURGERY

XX-YEAR PROSTATE CANCER-SPECIFIC SURVIVAL AFTER SURGERY

I put them in capitals because they are different aspects of the problem.

Recurrence free means that, as of now, I have about a 42% chance of remaining recurrence free within 5 years: higher at 2 years, lower at 7 years and 10 years.

[ This is based on the pathology results and it being two months after surgery: if it were 12 months after surgery, it moves to 52% ]

So once it recurs, and you get post recurrence treatment, the second number click in

My 15 YEAR PROSTATE CANCER-SPECIFIC SURVIVAL % AFTER SURGERY is 92%

These numbers come from this link
https://www.mskcc.org/nomograms/prostate

I intend to go through this stuff with him in November, as well as why the PSA level was not actually zero.

I am happy with the 4 month review as it was my plan to check the PSA level every three months, as at these low levels there is not much wriggle room.

Finally re the sexual dysfunction side effect, which I don't get into here, I offer the following which is based on something I got from a colleague:

Prostate surgery

A man wakes up in the hospital after prostate surgery.
The doctor comes in and says, "Ah, I see you've regained consciousness. Now, you may remember that prior to the surgery I mentioned I might have to do some nerve paring which would have consequences for having, post op, a full and active sex life.
I had to do some serious nerve paring on both sides, the man groans, but the doctor goes on "however my staff tell me that your health insurance will allow you spend up to €9,000 on whatever you want to help you recover from the side effects of the surgery"

The man perks up, the doctor says, "You must decide how you want the money spent on getting you fully back in the saddle so to speak.

I understand that you have been married for over thirty years so this is something you should discuss with your wife as we don't want her to be disappointed so it's important that she plays a role in helping you make a decision."
The man agrees to talk it over with his wife.
The doctor comes back the next day, "So, have you spoken with your wife?"
"Yes I have," says the man.
"And has she helped you make a decision?"
"Yes" says the man.
"What is your decision?" asks the doctor.

"We're getting granite counter tops."


Keep well: back in November.