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User
Posted 30 Dec 2020 at 23:56
"So if you have one instance of some slow growing PC cells producing lots of PSA you may get further treatment, before someone with multiple instances of low PSA emitting PC clusters and be in more need."

In practice, highly unlikely as the vast majority of PCas are adenocarcinoma and years of data have made the behaviour of adeno PSA quite predictable. The scenario you suggest might theoretically occur if the man has a non- or low-secreting PCa such as small cell but in reality, that would have been identified in the post-op pathology.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Dec 2020 at 00:12

"On another topic how do you know PC has spread to your bones?"

 

From a bone scan if the metastatic clusters are large enough to see; with micromets, there is no way of knowing until the PSA starts climbing. 

 

In reality, the surgeon triangulates the 6 week post-op PSA with the pathology results and then the subsequent PSA tests in order to predict the likelihood that the op was successful. They have many years of data to rely upon:-

- a post-op PSA of less than 0.1 with negative margins and adenocarcinoma and no perineural invasion indicates a likely success - if the PSA remains <0.1 for at least 5 years, even better

- a post-op PSA of 0.2 is bad news; indicates that the PCa had already metastasised before the op

- a PSA that falls to <0.1 immediately post-op and then climbs steadily over a period of time indicates that some cancer cells have been left in the prostate bed; this is often also indicated in the pathology. Salvage RT is usually considered in this case and only if that is unsuccessful would they conclude that the mets were further afield

- with a post-op pathology reporting positive margins, PNI and / or a rare type, a wise surgeon may not wait for the PSA to go above 0.1 before referral to oncology

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Dec 2020 at 00:16

Hi,

er still compiling TLA,s....

TWOC?

Thanks

 Buzzy

User
Posted 31 Dec 2020 at 00:41

Thanks Lyn,

The conversations with both consultants were non committal  about success of removing absolutely everything, due to invasion of seminal LHS vesticle. The comment from one post-op about the OP being difficult also re-enforced this so I suspect issues will arise due to the PSA of 24.1 pre-op, hopefully not....But hope hasn’t worked this year..

Currently unaware of what they will be looking for post op with pathology, and although a negative margin is something I am aware of the proximity to other parts is concerning.

I have two deep aches sans derrière that I will mention at the next meeting, this maybe just pressure sores due to lack of activity currently ( and not wanting wounds to bleed again) and although have been scanned have my doubts about that process too! (As attending nurse/operative could in no way explains the image I watched while the body scan was being carried out)

I am grateful for the dialogue, as I have not had that much actual talk time with anyone and it is beyond surreal!

We bought a car recently, and spent more time buying that than I have actual clinic time with consultants/doctors with this F’ing thing!

Hope you and yours have a non PC new year!

Buzzy

 

User
Posted 31 Dec 2020 at 01:48

Originally Posted by: Online Community Member

Hi,

er still compiling TLA,s....

TWOC?

Thanks

 Buzzy

Trial WithOut Catheter.   i. e. the district nurse comes around and removes catheter and you see if you can pee; if not, you have failed and they give you another catheter. I have some experience of intermittent self catheterization, but that is a longer story than you need to hear at the moment.

BTW, in the criminal justice system TWOC = taking without consent, which is short hand for stealing a car usually for a joy ride.

BTW, TWOC is a FLA not a TLA. 

BTW, BTW is a TLA. 

Dave

User
Posted 31 Dec 2020 at 07:59

Ahh...Err....Ughh!

☹️

TTFN

 

User
Posted 31 Dec 2020 at 09:04
You are over- fixated on the significance of your previous PSA of 24 which I think in your mind is worryingly high.

The PSA scale just on this forum at diagnosis has been 0.5 to 13,000 ... the highest PSA our urologist has ever seen is 160,000! We have had men on here with PSA of 60, 80 or higher and no cancer - we have seen men with PSA of 80 or more have successful radical treatment.

It isn't your PSA that is the main concern; you have had surgery knowing that you were a T3b and that neither of the consultants you spoke to could say with conviction that the op will be successful.

What should you be hoping for in 5-7 weeks' time?

- PSA <0.1

- negative margins

- adenocarcinoma

- no evidence of extra-prostatic involvement apart from the already identified seminal vesicles

You will also want to know whether they were able to save any of the nerve bundles.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Dec 2020 at 11:21

Lyn,

Thank you, that’s what I have been trying to figure out, how to measure the next bit against the previous bit (Surgery). I.e the success of the choice I made.

The PSA for me has been a worry as throughout both doctors, three consultants and the nurses I have spoken to have all said it was “Very High” in a way I have interpreted as “Oh really THAT high...oh dear....” one nurse even said that it was “unusually high, double the level we normally operate on”... hence the trepidation... and most cases on the forums are below 10 ish and are having the operation at that level.

This is still so new and I haven’t really had many meaningful conversations with the clinic as everything is so rushed and COVID safe. Didn’t really get a proper look at the imagery either.

What role does Testosterone play in all this? Is it bad to have too much, and why isn’t it measured at the same time as the PSA if it is? Is it best to vigorously exercise causing the generation of more, or be sedate?

Have a good new year, and very much thanks for the knowledge, sorry you know this stuff.

Buzzy

Edited by member 31 Dec 2020 at 11:22  | Reason: Not specified

User
Posted 31 Dec 2020 at 11:31
It may be true that at your hospital, they generally only offer surgery to men with a PSA lower than yours, but it will also be true (nationally) that a man with T3b is often considered unsuitable for surgery (which is one of the points Andy made above - why did the MDT recommend surgery in your case?).

I think from watching posts on here that it has been much harder for men to be diagnosed during a pandemic in some areas.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Dec 2020 at 13:35

The consultations I had suggested that the type and position of my infestation it would have been unwise to leave it in-situ. The conversation around RT was that the MDT recommendation was surgery, and if required RT.

Luckily or un-luckily the whole pace of the diagnosis and treatment timeline was determining the course, and I thought I had enough information to trust the judgement of “My” medical advisors; compared to whome I knew doddle-squat about the subject.

One conversation suggested RT alone would not shift what I had due to the proximity of other anatomy, and removal would spare duress on those parts if RT was needed. In short the get it out and deal with the consequences option was time related and if I delayed that would no longer be an option. Especially due to covid etc.

Its done now and I have a “Knee Wee”...

Lets see how it went when I can actually speak to someone!

My only other option would be wait till 20th January for the next surgical list, hopefully I will be past most of this rubbish by then.😀

Buzzy

 

Edited by member 31 Dec 2020 at 13:35  | Reason: Not specified

User
Posted 31 Dec 2020 at 14:34
Yes, I wasn't saying you were wrong to go for the op - just observing that the nurse's comment that they wouldn't normally operate at your PSA level needs to be seen in the wider context ... there's a whole number of reasons why you don't fall into the 'normal' surgery group. As long as you had a full understanding that the op may not get it all and you may need salvage RT / HT you had little choice - it is a brave (& possibly foolhardy) man who goes against the unequivocal advice of a team of experts.

It is my observation that problems tend to develop where the man was misled or didn't fully understand that the surgery might not be successful, or where urologists downplay the risk of side effects and overblow their own abilities. Realism is a great emotional security blanket.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jan 2021 at 23:02
Hi,

I am having pains in the groin area around the perineum when I sit, although I am off the painkillers now (Yippee!😀)

And am wondering if I should take some Ibrubrophen to reduce the swelling, no doctors or clinic available till next week.

Not sure why this is swollen and sore when I sit down after nearly 10days after the op. (Time fly’s when you are having fun!)

I may have a big bruise, but it’s a bit dark round there...

Is this anything to do with the lymph nodes being removed, and fluid not draining?, any thoughts appreciated.

Sitting in a hot water bottle helps in the evening, but I would rather not poach the poor redundant testicles too much as they have been through so much recently....

I get the clips out Monday, and hopefully the painful bit on Thursday; is this a fun experience or should I take a good leather belt to bite down on? 😋

Is it a “Whip it out and send you home?” Or will there be cameras, lights and more prodding?

Buzzy

User
Posted 02 Jan 2021 at 23:33

Originally Posted by: Online Community Member
Hi,
I am having pains in the groin area around the perineum when I sit, although I am off the painkillers now (Yippee!😀)
And am wondering if I should take some Ibrubrophen to reduce the swelling, no doctors or clinic available till next week.

 

I was advised to take painkillers if it helped me to keep mobile. Walking is good. If your catheter bag fills with pinky or red fluid, you're doing too much. Also - don't sit for too long in one position.

No harm in taking some ibuprofen but you shouldn't take it on an empty stomach. 

Having a catheter out should not be painful. Don't worry about it. It's an odd sensation but very quick and not painful.
The TWoC procedure will vary depending on where you are and the local COVID response. Some places they will take it out and send you home with a phone number to call in case of (rare) issues. Other places they will want to monitor you for a while (usually ~3 wees).

Edited by member 02 Jan 2021 at 23:34  | Reason: Not specified

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 03 Jan 2021 at 08:25

Buzzy 

I had my Catheter whipped out and have lived with the consequences for the last six plus years. If it gets stuck coming out insist on getting a urologist. Had twelve removals and all have been pain free, even the whipped out one.

 

Make sure you are well hydrated on the day of removal. Listen to the advice of the staff on how to drink water and relax. The more you flush out of the urethera, the quicker the stinging goes. Had 12 TWOCs never failed. The trial with out Catheter procedure differs between hospitals. Once removed you have to pass urine two or three times and then have a bladder scan to check the bladder is reasonably drained. 

 

I took a seat cover and towel just in case of accidents on the way home, you realise how bumpy our roads are.  

 

Thanks Chris

 

 

User
Posted 03 Jan 2021 at 08:46

My scrotum had swollen to the size of a grapefruit post op due to a buildup of fluid, but it returned to normal after a few days. I was taking paracetamol for the pain in my perineum.

For me, the catheter was removed without any issues and I was surprised to see how long it was. 

It might be a good idea to take pads with you to the TWOC just in case they don't have any for your journey home. 

Good luck with your recovery. 

User
Posted 04 Jan 2021 at 00:04

Thanks,
been Mostly Ok but today have had a couple of issues.
The Leg bag I changed this morning and again it stopped filling about 1hrs later and was slow all day.
After a good walk this afternoon it was 1/3 rd filled with blood, er not good☹️

While I was trying to sort this out I think I realised what the issue might be, and yep raising the bag higher up over the bladder proved the point; a large volume of air rose up the tube and into the bag! The flow cleared and resumed normal after that😀

Looks like no-one mentioned about introducing airlocks into the plumbing, from the long connecting tube when you plug a new one in?

I probably introduced this changing the leg bag and have been a human barometer all day?
Presumably my pipes have been air locked all day?

Things have returned to normal now, but surprised this wasn’t mentioned, there is a simple non-return valve in the bag but that’s below the 300mm (plus catheter) tube. More than enough air to block a fine pipe with a low static head pressure and some bends in it!

Buzzy

 

Edited by member 04 Jan 2021 at 00:06  | Reason: Not specified

User
Posted 04 Jan 2021 at 01:20

I did have a cath in but it wasn't after a prostatectomy so I don't know whether that amount of blood a week or two after surgery is normal.

I'm not convinced about your airlock theory. I might explain why in a later post if you're interested, but more importantly do you think it could have been a blood clot in the bladder blocking the catheter tube? Which you dislodged by raising the bag and effectively pouring urine back in to the bladder hence pushing the clot out of the way of the end of the catheter tube. 

Dave

User
Posted 04 Jan 2021 at 07:52
Hi Dave,

Don’t know but it cleared after that..

Maybe the Catheter is slightly damaging the soft tissue in the bladder as it did happen before a few days ago?

Itching to get this out now as still can’t sit down properly☹️

Hopefully staples out today, and I won’t deflate like a used party balloon when they are removed!?😀

At least the clinic should be answering the phone today.

Buzzy

User
Posted 04 Jan 2021 at 11:05

Buzzy 

I was told Rosé colour urine in the bag was probably okay, Red wine colour needs looking at. I was still passing traces of blood and bits of scabs a couple of months after the op. I belong to a  Facebook Catheter site and urine not draining after a bag change is a frequent issue. The catheter sticking to the bladder wall is also often reported. When I first had a Catheter they didn't have the non return set up, lifting the bag above the height of the bladder was an easy way to unblock clots and debris.

Thanks Chris

 

User
Posted 06 Jan 2021 at 00:09

Hi Chris, thank you.

If you have ever made or seen a “Cartesian Diver” or manually bled car brakes you can see why leg bag changes introduce air and why this is an issue. So from an engineering point of view for fun understanding the issue..? 😀

The small diameter catheter and the 300mm/5mm of pipe in the leg bag introduce a limited volume of compressible air into the “hydraulic system” as you swop bags and drain the catheter ( above the non return valve) If it was a central heating system it would be an unvented system not designed to have air within.

The air can get trapped in the catheter simply due to surface tension and will resist the poor fluid “Head” pressure from the bladder quite effectively, compressing and resisting the downward flow of urine as the air will compress, the fluid won’t . Bends and kinks will make this worse. Any air in the bladder will rise to the top of the fluid but the bladder is mainly empty as it’s drained so it will stay there and possibly effect the input tubes as well? (not much static fluid pressure to force the air out either?)

What the effect of air in your bladder is I can only guess, but I don’t think it’s normal or healthy if it builds up unchecked? Air in any fluid system allows movement or sloshing about of the fluid, that would not happen if fully filled. The dynamic pressure would also vary considerably especially if you are out exercising and change altitude as I have been. Pressures could spike higher than atmospheric under certain conditions within the bladder, not sure if this would be OK or not?

I have had blood twice, (OK immediately before on both occasions) and both times after changing the leg bag and exercising; the bag has failed to drain properly afterwards for a few hours and has been Mateus Rose. I have removed a large volume of air to clear the issue after and then OK. But loads of others haven’t had issues so??

I have had problems with fine tubes and pumped water cooling systems over the years, and it’s amazing what about 100mm of air in a small bore pipe can destroy, I don’t want it destroying me!

Anyway hopefully being removed on Thursday?😀

Then what?....

Oh!...pull-up pants and toilet training?

Buzzy

P.S The whole Catheter design is annoying me really!

 

 

 

Edited by member 06 Jan 2021 at 01:30  | Reason: Not specified

User
Posted 06 Jan 2021 at 01:52

Originally Posted by: Online Community Member
What the effect of air in your bladder is I can only guess, but I don’t think it’s normal or healthy if it builds up unchecked?

I think the main concern is if it got in, then so might bacteria, causing an infection.

I imagine you might end up pissing out the air, which might be a bit strange.

Pissing gas is one of the symptoms of a fistula too (bowel and urethra getting connected due to prostate infection, and can be caused by HIFU too).

User
Posted 06 Jan 2021 at 09:57

Buzzy 

That was a very comprehensive reply. I have now had a suprapubic catheter for almost four years.  I do sometimes get air in the bladder when flushing the Catheter, urinating air and urine is a strange sensation.

I was 99 percent dry 4 days after Catheter removal, some guys are dry from day one, others are not as fortunate.  I quickly learnt to tense the pelvic floor muscles when standing. I also learnt when sitting at my desk picking up something off the floor made me leak. 

Hope all goes well.

Thanks Chris

 

 

User
Posted 06 Jan 2021 at 10:02
Hi Andy,

The thoughts are for fun curiosity really to take my mind off things, but for the gas to be removed it must be either absorbed internally, dissolved or removed; in order for removal the vessel must be inverted so the outlet is at the top! So pissing out gas in a headstand position! 😀

Just curious about the appearance of blood when all else was OK prior to bag change, the pressure/density change may allow blood to transit through tissue membranes; like reverse osmosis in a de-salination plant? Fluid dynamics is governed by laws that don’t give in.

How the rest of the urinary system reacts to lack of fluid is unknown, so maybe some infections are a reaction to prolonged introduction of internal air during catheter management? Just a thought.

I can’t wait to get mine out now as I am continually feeing like I need a wee!

I wonder if anyone has done research into the detrimental effects of air in the urinary system!?

Buzzy

User
Posted 06 Jan 2021 at 10:52

Hi Buzzy,

Well that brought back memories of my catheter (and bleeding brakes).. watching debris or air moving through the tube while sat on the toilet. I had the urge to pee too and quite a lot of urine bypassed my catheter the night before my TWOC.

 

User
Posted 07 Jan 2021 at 23:54
Well that was odd..never been so glad to show a stranger my Willie!, (well a few times..😋)

Catheter out, and now on potty training phase, never been so pleased to have a wee!

I guess I now have to sit it out and find out if farts will ever be without risk again?

Been told it could take weeks or months, or never to sort itself out ☹️ However was told it was a challenging op from the notes, but won’t see consultant who did the op till March! Was also told they do between 1000 and 1200 a year; quite sobering.

Buzzy

User
Posted 11 Jan 2021 at 09:00
Found out my immediate neighbour had bladder cancer and prostate cancer 18 months ago, that makes 11 people who I now know have had treatment for or are undergoing treatment for prostate cancer. I knew none of this 3 months ago. It is too common, is there research into a preventative treatment?

Recovery continuing, I don’t leak every time I move now; which is an improvement.😀 But getting fed up with the pads (Tena 2), anyone any suggestions to avoid “Boiled eggs”?

What’s the best alternative to normal tea (That doesn’t taste like wee) as I think I need to try and cut out the caffeine?

Buzzy

User
Posted 11 Jan 2021 at 09:59

Hi Buzzy,

Sounds like you're making good progress. 

I switched to decaffeinated tea bags and they're okay, bit weaker than normal tea but I don't like it too strong anyway. 

Cheers.

User
Posted 13 Jan 2021 at 14:42
To Tea or not to Tea?

Had the RALRP Op on 23rd Dec 2020 and the Catheter out on the 7th Jan 2021.

I did a trial with PG and Earl-grey tea days, the early grey tea days I am not wearing out the toilet.

Earl-grey tea is palatable and doesn’t cause the irritation and twitchy-ness off the bladder, good old PG does 😀

On the whole I feel more in control, even if the odd glass of red wine may happen to be the only thing to rehydrate with!

I have now been able to move down to the Tenna 1 pads during the day, and no longer feel like a duck when I walk; however I have still

to work out the best night time option as things settle down. Suggestions other than the full blown “Potty pants” as my grandmother used to call them would be welcome please?

Pelvic floor exercises..

My clinic says don’t do the recommended routine in the leaflets, do 10 “fist squeezes” every time you drink; and don’t do the long “Crunch” as recommended as this creates the wrong muscle fibres. What other routines have people been told?

Buzzy

User
Posted 13 Jan 2021 at 17:42

Originally Posted by: Online Community Member
To Tea or not to Tea?
Pelvic floor exercises..
My clinic says don’t do the recommended routine in the leaflets, do 10 “fist squeezes” every time you drink; and don’t do the long “Crunch” as recommended as this creates the wrong muscle fibres. What other routines have people been told?

Buzzy

in the build-up to surgery I was doing ten sets daily of 10 reps for 10 seconds with the last hold of each set being a minute. I would also try to do a fast set in each group.

After surgery I was told none until catheter out, then 3 sets of 10 reps 10 seconds a  day for 3 months would 'set you up for life'.

So I did that religiously and now am fairly relaxed about it. I do a set every now and then when I remember.

Edited by member 13 Jan 2021 at 17:44  | Reason: Not specified

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 17 Jun 2021 at 09:42
Well it’s almost here,

Radio therapy starts on 28th June, I have a PSA and covid swab next week then it’s into the microwave ( so to speak) ; yes I know it’s a different form of the radio spectrum but the effect on me will be about the same? Keep having visions of exploding cells as the “ Death ray” scans my nethers….

I just hope the awkward bits around the surgical clips that are my issue can be dealt with, and not obscured from the harmful dose that is supposed to kill the bloody things!

Bicalutamide an Decapeptyl are the treatment at the moment, with “egg frying forehead” occasionally, also you know that sort of deep itch that gets “Better” when you scratch it, but gets worse when you stop? Scrotum; nuff said…

It has been a long pause in activity, during which I found out my Brother in law has a G6, only found due to me suggesting he gets tested. Keep meeting people who say “ Oh yeh I had that” or know someone who does; makes you think about why it seems to be a taboo subject in some places.

66Gy over 33 sessions, any idea how long people survive without it getting to be a real ordeal to get to the end?

Buzzy

 
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