My Prostate Cancer Surgery experience

User

Posted 21 Sep 2018 at 09:32

Hi John,

Yes I feel really fortunate today with that outcome which I did not expect. I still have that "what if" going on round my head as I know the cells could have already moved around my body in the bloodstream and could be quietly biding their time elsewhere. Common belief though is that if it is going to travel it will first stop off locally in the margins around the prostate and local nymph nodes right now things are looking good. The ongoing monitoring of the PSA will no doubt guide me going forwards and I know this could go on for @ 5 years yet but so far I could not have hoped for more having been through all the emotional upheaval since being diagnosed in April/May this year. You know what I mean, that time you look at someone you really care for and think to yourself "how long and what to do next"....

Here's to moving on and getting on with living.

All the best

Pauly

User

Posted 21 Sep 2018 at 10:09

If you can be bothered to fill them in, there are Nomograms which attempt to forecast the percentage risk of recurrence and morbidity of over a period of years, but bear in mind that if it is a ten-year forecast, the data is from ten years ago and this kind of medicine has gone on in leaps and bounds since then.

So we might have died of a heart attack or car crash before any recurrence. As you say, move on and up!

This is the Nomogram my oncologist used:

https://www.mskcc.org/nomograms/prostate/post_op

Edited by member 21 Sep 2018 at 10:13 | Reason: Not specified

User

Posted 21 Sep 2018 at 10:45

Hi John,

That's a very interesting prediction tool, I think I saw that or something like it when I met the radiotherapist when I had to choose my preferred treatment plan. Did wonder where that came from so thanks for sharing it. As you say, it is a simple predictor and over time other factors come into play that can affect survival rates long term. One of those things that is interesting to try out at least.

All the best

Pauly

User

Posted 21 Sep 2018 at 11:24

Pauly, prostate cancer doesn't spread through the blood - it spreads though the lymph system. Think how much trouble we'd all be in after a biopsy if it did spread through the blood!

Cheers,

Chris

User

Posted 21 Sep 2018 at 12:28

HI Pauly

You have got your your post-operative biopsy results back quickly as Bollinge says. I will not get mine until Mid October which will be 4 weeks after he op but good that you have and fantastic news that they are so positive for you. You must be so relieved

Last night I went to the toilet around every two hours which was better than the night before so hoping it gets better as time goes on. During the day leakage is usually down to coughing or getting up from a chair. Will try and increase my working as I get stronger.

I am staying away from tea during the day as finding it is making me want to go to the toilet more often and reducing my fluid intake 2 hours before bed

Enjoy your peppermint tea and Breakfast

PS . I would like to thank everyone who has made contributions to this thread they are very much appreciated and I wish you all the best

Best wishes

Paul

User

Posted 21 Sep 2018 at 12:57

Hi Chris,

My bad there....thanks for clarifying re blood etc as I would not want to mislead anyone so do appreciate your update.

Hi Paul,

I did not expect them back so soon either was thinking it would be 4-6 weeks not 10 days, maybe it was fast tracked as I had a high grade tumor at Gleason 9?

Just keeping my fingers and toes crossed now for you guys and the kind of news you want to hear going forwards.

All the best

Pauly

User

Posted 21 Sep 2018 at 14:11

Hi All,

My Da Vinci op was in early June. The post op week or so were uncomfortable but looking back now, I find it hard to believe or accept that I have been involved in a significant surgical op or that I have a life threatening condition. I can remember toothache which caused more upset ;-)

My own post op experiences are that I was/am not incontinent while lying or sitting down but that I leaked like a sieve when standing and moving. Three Tena no 3 pads a day to begin with - but down to just one now which can be nearly dry if I'm having a slack day and just catches drips if I'm working actively but I'm still holding enough to need a pee at regular intervals. I might be up once or at most twice in the night when my bladder seems quite full. All in all, I find the Tena pads extremely good and I have never thought that the incontinence would be life limiting in any way. Based on present progress, I expect to recover fully eventually.

I have found the erectile dysfunction a bigger blow than I anticipated and I was finding the future prospects to be an unpleasant thought. I am blessed with a good partner and have found a way forward that gives each of us equal pleasure and benefits, which I confess has been a great relief. At the moment even with daily 5mg Cialis there is no sign of an erection returning.

Which brings me to the main point of learning in my personal PC journey. Although I have found that the sharp end of the NHS has been excellent, the admin and follow up is pretty poor. When the Surgeon said 'catheter out in 7 days and I'll see you in 6 weeks', neither appointment appeared until I chased it up and then of course the appointment given is late. I'm not going to list everything that has happened but suffice to say that (based on my experience) you must 'take charge' of your treatment and make sure that the appointments that you need are made on time by chasing them up yourself. Answer phone messages are rarely answered and calls rarely returned.

Also, prior to my op I completely put myself in the hands of 'The NHS' and did as I was told, in fact I purposely stayed away from the web and google in terms of learning about Prostate Cancer and PC treatment. I think that my treatment has gone well but I also feel that I left myself vulnerable and would advise other to get to know as much about the ins and outs of diagnosis' & treatment.

If I were to advise anyone else following I would advise getting to know as much as you can, - which includes understanding that there are many variations and differences to the same diagnosis and treatment.

There, that turned into an epistle, - apologies - and I hope that your 'journey' is as positive and pleasant as it can be.

regards

stu k

User

Posted 21 Sep 2018 at 16:14

Hi Stu,

Thanks for sharing your experience and good to hear it has largely been a positive one apart from the admin side which is unfortunate and not something anyone needs at such a stressful time

I agree the Tena pads/ Underwear are very good and they give me a lot more confidence going out. I had a trip to a garden centre with my wife today as it is too wet outside to walk and felt fine

I hope your "Journey" carries on in this positive way and the admin and follow ups improve for you

Let us know how it goes

Best Wishes

Paul

User

Posted 21 Sep 2018 at 23:14

Hi Paul,

Here's wishing you a speedy recovery.

I had my RP in June last year - the operation went well and I recovered quite quickly. The main problem I had was the catheter, I had a small leak in the bladder neck which meant I had the catheter in for 9 weeks. Not a pleasant experience. I had 4 cystograms until eventually the leak had healed and the damn thing was removed.

Generally my care was very good but staff are so much overworked. One night I was nearly given insulin (I'm not diabetic), it was only when the nurse got the needle out and said your sugar levels were fine this morning when I replied but I don't have sugar ! Same name different person.

On another occasion after a cystogram I was on my way home and developed a sudden urge to go to the loo. I was busting and developed so much pain in my stomach. Not understanding why the catheter bag wasn't filling I was horrified to discover that one of the xray team had left a clamp on my catheter tube so couldn't pass water. The relief at releasing that clamp, needless to say when I told the specialist he wasn't too impressed and 'he would be having words'.

After catheter was removed I was dry within 3 weeks and very rarely now when I just lift something heavy I may get a twinge drip.

These were just a couple of minor blips and realise I'm one of the lucky ones.

Best Wishes

Rich

User

Posted 22 Sep 2018 at 06:20

Morning gents,

Another night going on the hour every hour just feels like egg cupful each time which is frustrating but hardly worth worrying over in the grand scheme of things..

Back to bed for another short kip.

User

Posted 22 Sep 2018 at 19:09

Hi Guys,

Another day of continued feelings of having a full bladder and feeling the need to go every hour but loo visits take around 5-10 mins and only seems like a an egg cup before I have to stop. Then it's waiting for another hour to repeat again and then again every hour. Is this "normal"? If so how many days after they remove the catheter should some kind of more normal peeing activity kick in? My catheter came out Thursday lunch time so only been 2 days and a bit so far. Any views would be really appreciated.

Pauly

User

Posted 23 Sep 2018 at 10:01

Not fully qualified to answer as I had a supra pubic catheter which was in a long time due to complications, but even with the complications my peeing was pretty normal when the catheter was switched off and, from what I have read, your experiences are not typical.

My guess is that you still have quite a bit of swelling/inflammation at the new joint. Hopefully this will resolve soon but would suggest contacting your urology nurses sooner rather than later. Do you have any blood in your urine or signs of infection?

Nick

User

Posted 23 Sep 2018 at 14:11

Hi Nick,

No sign of infection or bloods in my pee which is pretty cleqr most of the time. Just sometimes getting stabbing pains (my bladder being overfull?) and the never ending urge to go. Will see how things go over next 24 hours as that would by 4 full days since catheter was removed Thursday lunchtime.

No problems eating or drinking but getting around can be difficult although manageable. I wouldn't mind if leaked into my pads just to relieve the pressure but nothing. Have to sit on the loo and wait and wait and wait for anything to happen, even when I squeeze my pelvic floor muscle just get little dribbles even after 5 minutes I can sleep with it but only for 30-50 minutes at a time and then it's back to bathroom to repeat. As I said before in the larger scheme it's probably a short term problem but was just wondering how long to give it.

All the best

Pauly

User

Posted 23 Sep 2018 at 15:06

I’ve had problems with urine retention both times I’ve had a catheter in. In my case I think the problems have been primarily psychological rather than physical: the more desperate I am for my muscles to relax in order to allow me to urinate, the more impossible it is to relax them. What happened both times in my case, however, is that when I got to be absolutely at bursting point I was finally able to pass a little urine and then things gradually relaxed after that, but in both cases it took several days to return to a state where I was able to urinate normally again.

Chris

User

Posted 23 Sep 2018 at 16:11

HI Rich,

Thank you for your kind wishes and sorry to hear of some bad experiences. Having a Catheter in for 9 weeks must have been miserable and makes me feel even luckier now. I cannot begin to imagine your relief when it was eventually removed !!

Having a clamp left in must have been awful and that sounds like a basic mistake to make so not surprised the specialist was not impressed. I guess if staff are over worked it can lead to mistakes and that should not be the case when people need a high level of care.

Good news that you were dry within 3 weeks and you are feeling positive

I hope your recovery continues to go well

Best Wishes

Paul

User

Posted 23 Sep 2018 at 18:19

Well the urine issue has got worse and now hardly peeing plus top left front on my stomach has an underlying swelling that is hard and sensitive to the touch. Walking has become more of a shuffle and feels like I have balloon of water strapped to me. At A&E now waiting to be seen so can establish what's happening and any remedies. Expecting a long wait into the night as board showing 3 hours waiting time. Guess bladder or maybe kidneys although swelling us around the drain exit wound so perm anyone from those?

Pauly

User

Posted 23 Sep 2018 at 18:27

So sorry to hear that, Pauly. I do hope A&E are able to bring you some comfort, at least. Not the nicest place in the world to have to go.

Please keep us updated, and I'm keeping my fingers crossed for you.

Chris

User

Posted 23 Sep 2018 at 18:32

thanks Chris will update when I know more. Part of hopes it's nothing and have wasted every one's time and it's an easy fix. Other part hopes tat if it serious then I did the rights thing.

User

Posted 23 Sep 2018 at 18:45

If you're in pain you definitely did the right thing! I was embarrassed when I phoned "999" when I was in horrendous pain after being completely constipated for 8 days after my operation, but they assured me I'd done absolutely the right thing (and A&E sorted me out).

Chris

User

Posted 23 Sep 2018 at 18:48

Pauly

We often hear on here don't let any Tom Dick or Harry shove a catheter into your bladder following RP. I am sure you are in good hands but worth a reminder to the people treating you.

Best wishes

Thanks Chris

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