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Waiting for surgery but having second thoughts.

User
Posted 12 Apr 2019 at 18:07

blimey.  a lot in common.  


I was digging garden and DIY, after about 3 months. minimal scaring.  However .  this is a major op. extensive damage . etc.  I was only in overnight.  Golf .. swing can be quite intense. take it very easy.   I still get quite extensive groin aches, the bladder seems to think it's full when it isn't. However flow is far better than it's been for years and I can hold 300ml plus probably more so life is good. For me and I believe others post op. the biggest challenge  was constipation and getting the gut moving again.  it might have been a combination of drugs,  4 hr op etc.   It took me about 10 to 14 days to feel comfortable.


Absolutely no problems since.


I was up and about within 24 hrs.  The catheter awkward at night to get solid sleep, not painful though.  I kept a good flow of water intake, no alcohol or caffeine. Seemed to work for me.  


take care and all the best 


 


 

User
Posted 12 Apr 2019 at 18:59
God, yes - constipation! When I had my kidney removed last September I got completely blocked up from all the opioid painkillers they give you in hospital, and I couldn’t “push” because my abdominal muscles had been cut during the surgery (the same as with an RP). After 8 days of no movement I phoned “111”, they told me to ring “999” and the hospital gave me an enema to get things unblocked. Talk about a relief!

Cheers,

Chris
User
Posted 13 Apr 2019 at 01:25

My husband 56 had prostate removed just over 3 weeks nothing was fully explaind said mite have slight incontinence but he’s fully incontinent which was a shock I’ve rang and asked wen will it improve and all they can say dif people dif times please look into it first are whole life has turned upside down my husband will not go out as he leakes through a lot he has gone very depressed so please look into it properly and ask all questions good luck with what you decide my husband regrets havin it done 

User
Posted 13 Apr 2019 at 09:46

Holmsey - Really sorry to hear this, I just hope things improve with time. I must admit, the thought of being left incontinent and housebound is a major concern, ED I could live with but not that.  The problem is, non of the treatment options and side effects look great to me, it’s just a real tough choice. My thinking is, as I’m relatively active and fit, I might have a good chance of recovering from the surgery and I really do want the cancer taking out of body if at all possible. 

User
Posted 13 Apr 2019 at 10:09

Hi Neil,


I was diagnosed as Gleason 9 all indications were it was totally enclosed within the prosate.   I had a radical prostectomy in September 2018 (DaVinci).   Prior to this I consulted with the surgeon and the oncologist, both gave me their views but left the final decision to me, they did not push their preferred options at any time but just gave me the facts.   Radiotherapy would have involved a surgical procedure for me anyway as they told me I would have to have Brachiotherapy which involved inserting radioactive seeds and then a long course of radiotherapy.   In my view the prostectomy surgery just seemed more straightforward and I would be told fairly quickly what the surgeon would have found in terms of spread as he would remove surrounding areas which would be checked for any signs of cancer.  Recovery from surgery is indeed different for everyone, for me it took about a month before I could return to work (office based).   During that time, apart from having a cathetor for a week after surgery progress was nice and steady.   I have had several reviews since surgery and psa remains undetectable so the surgery for me was a complete success even though I am aware there is still a risk of recurrence which is why they do regular monitoring checks.   I do not regret my decision and more than happy to discuss my experience or any concerns you have.


Pauly

User
Posted 13 Apr 2019 at 10:15
The best advice I can give you if you opt for surgery, is to go for a high-volume surgeon. Practice makes perfect, and my own brilliant surgeon who has done over 3000 prostatectomies, said he wouldn’t send any friend or family to a surgeon who does less than 100 RALPs a year.

You can check individual surgeons’ performance on-line. The results are called ‘outcomes’.

Cheers, John.

User
Posted 13 Apr 2019 at 10:18

Morning Pauly - Thant’s great news, just what I wanted to hear, I just hope my recovery goes as well. 


 

User
Posted 13 Apr 2019 at 10:23

Bollinge- I’ve already been referred to a surgeon, I have been told he’s highly regarded but I’ve no idea how many procedures he does in a year - short of asking him, I’ve no idea how to find out that information.  

User
Posted 13 Apr 2019 at 10:28

Hi Neil,


You should be fine, just make sure you follow their advice post surgery and don't overdo things or rush to get back to 100% physical activity.   You say you are fit which really helps with recovery but just take it easy, slow and steady is very effective.   No heavy lifting (a full kettle max) to start with.   Short walks and light meals.    Plenty of rest.  Sleeping with a cathetor was  not easy for me (in fact I hated it) but it's over quickly enough 7-10 days on average.   You may get some leakage but their good mens tenna pads out there which can easily cope, no one will no you are wearing one but you.   I still get the urge to pee far more than before I was diagnosed but it's not really a problem you can't manage and as I said everyone has different experiences anyway.    When do you go in for the op?


Pauly

User
Posted 13 Apr 2019 at 10:35

Neil 


I don't normally reply to newbies, you will see why if you read my profile but your situation is so similar to where I was just over 5 years ago, I even sat on the anesthetic table asking if it was too late to change my mind. Almost 5 years on I have been "through the mill" but still here and still moaning (not all the time). All of my issues have been 1 in 500 or rare so I am definitely not the norm. My biggest concern was ED closely followed by incontinence, initially I was 99 percent dry 4 days post catheter removal, Ed was and is an issue but boy has it been fun trying to sort it and in my case, orgasms after prostate removal are out of this world. Five weeks post op I was back at work and the world was back to my new acceptable normal. You have the opportunity for a cure take it. If I could turn back time, would i do the same again ? yes.  


One of the first things I looked at was "what will death from prostate cancer be like" stories said "with modern medication you will not be in pain" I think that was a lie. 


Thanks Chris

User
Posted 13 Apr 2019 at 10:39

Hi Neil,


I would add that looking at the other posters on here you have pretty much got the A-Team on these forums commenting and I doubt there are any questions or concerns they couldn't address with you, they are a great bunch and always happy to help with their excellent knowledge and experience.


Pauly


 

User
Posted 13 Apr 2019 at 10:41

Pauly - That all sounds really positive, any idea when I might be back out on a golf course?  My appointment with the surgeon is May 14th, I’m guessing this is for a chat and assessment. I was told I was on a cancer pathway, which I assume means I should get treatment within a set time frame (around 60+ days?). May 14th is getting close to the end of that time, so perhaps the operation could  follow shortly. 

User
Posted 13 Apr 2019 at 10:55

colwickchris - Having just read your story I’d say “been through the mill” is an understatement. It almost looks like what could go wrong, did go wrong - how on earth do clips get left inside you? What a journey you’ve been on! I’m hoping mine might be a little less eventful :-(

User
Posted 13 Apr 2019 at 11:06

Neil


The clips are inert and are routinely left in and are supposed to harmlessly settle in a corner.


Good luck 


Thanks Chris

User
Posted 13 Apr 2019 at 11:06

I hope all goes well for you think a lot of my husbands problem is his health in general he had a bleed in the brain 2 coils fitted a heart attack 3 years ago and he’s been told he has blockages in his leg I suppose it’s better for him to be incontinent than having cancer just wish things were explained better to us but you have chance to look into everything good luck and speedy recovery 

User
Posted 13 Apr 2019 at 11:09
You can find surgeons’ outcomes on their own website, and you can research them by name.

https://www.baus.org.uk/patients/surgical_outcomes/

And of course, if you click my profile you can read all about my little difficulty down below.

Cheers, John.
User
Posted 13 Apr 2019 at 11:39

Hi Neil,


Golf can wait for bit to be honest.    You will know when you are ready, maybe 2 months, maybe 3 or longer.   Putting green and 9 holes chip and putt for a bit with a light bag/trolley to start.   then the driving range for the driver before you get into the swing of things.   Never know avoiding too many wayward drives could actually improve your game!

User
Posted 13 Apr 2019 at 12:55

Thanks Paul, my handicap has been heading North lately anyway, perhaps a break from the game might do me good. In the great scheme of things I suppose it’s not important, I would like to think I’ll be back playing again one day though.

User
Posted 13 Apr 2019 at 13:19

Bollinge - Thanks for the link John, very interesting.  Seems my guy has over 70 robotic procedures under his belt, I’m hoping he’s got the hang of it by now. Just had a good read of you profile, love your story telling style, had me in stitches :-D

User
Posted 13 Apr 2019 at 14:54

Originally Posted by: Online Community Member


Pauly - That all sounds really positive, any idea when I might be back out on a golf course?  My appointment with the surgeon is May 14th, I’m guessing this is for a chat and assessment. I was told I was on a cancer pathway, which I assume means I should get treatment within a set time frame (around 60+ days?). May 14th is getting close to the end of that time, so perhaps the operation could  follow shortly. 



The timeline targets are a bit of a mess, to be honest. NICE says you should have your surgery within 31 days of agreeing to go ahead with surgery, but in your case the 31 days probably won't start ticking until the 14th May when you see the other surgeon. Transfer from one hospital to another stops the clock unless they are both in the same clinical commissioning group (CCG) I think. 


The 62 day target applies only if your GP or a screening clinic made an urgent referral to urology - but again, the clock stops if you are referred to a different hospital, or if you take time out to make a choice between different treatment options. 


Perhaps I am cynical but it seems to me that there is a benefit to the hospital if the MDT makes no absolute recommendation. That doesn't apply in your case but it does in many others here. If a urology department knows it cannot meet the timescale for surgery, it could (if it is bothered about the targets) just put men on hormones to stop the clock. And even then, the hospital only has demonstrate that they achieve the target in 85% of cases. Hard luck for the 15% who end up waiting longer. 

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