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User
Posted 05 Feb 2019 at 12:04

Hi Everyone 

Have transferred to this section as we now have a Pca diagnosis.  Husband has a gleason score of 3+4(7) and has along with the consultant decided on a prostatectomy.  Met with the surgeon yesterday who was quoting a possible 2 month wait (private), naturally my Husband wants this sorting asap so I am looking at other surgeons.   I know surgeons can't be named on the boards but if anyone would be kind enough to DM me (if that's allowed).

Thankyou

User
Posted 05 Feb 2019 at 13:13
Urology surgeons have to publish their stats online - you can check by individual surgeon or by hospital although some surgeons don't comply - you have to wonder what they are hiding. Keep in mind that some of the apparently most successful surgeons cherry-pick patients that are likely to be straightforward with good outcomes while there are others whose outcomes don't look great because they are brave and take on RPs that others would refuse to undertake.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Feb 2019 at 18:05

Hello,

I used the BAUS website to check out the surgeon, it says how many they've done of what kind and complications.   https://www.baus.org.uk/

Without wanting to cause alarm my own opinion is that there is no time better than as soon as possible to have an operation. They kept telling me they're slow growing and 3+4 might be OK, mine was upgraded after the op from 4+3 to 4+4 and one with two 4's is serious stuff.  

It's great to have a top surgeon but I was happy with a 1 a week man who saw me quickly and did it within 10 days of me meeting him. He worked full time as lead urology surgeon in the NHS and at 2 private hospitals and had over 20 years experience.

All the best, Peter

User
Posted 21 Feb 2019 at 15:08
Yes, in some areas of the country the attendance at the session is obligatory if you want a pump on NHS prescription but there is absolutely no reason why it had to be before the op - must just be how they do it in your area.

Good luck!

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

User
Posted 21 Feb 2019 at 18:02
yes
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Feb 2019 at 22:59
Just wanted to wish hubby all the best for tomorrow's op.

Chris

User
Posted 06 Mar 2019 at 16:58
Sounds very positive apart from the trapped gas.

Keeping up the PVE will see a big improvement in continence. Early days. Best wishes.

Ido4

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User
Posted 05 Feb 2019 at 12:25
Hi Gee,

Prostate cancers are usually slow growing, so a two month wait is probably not so bad. I waited six months to go with the right surgeon.

My message function is not working, like so many things on this bulletin board, but you can email me at re.vision@btinternet.com and I’ll tell you about Professor Whocannotbenamedhere.

Cheers, John

User
Posted 05 Feb 2019 at 12:47

Thanks John, just messaged you.Prof whocannotbenamed is not available till April.

 

User
Posted 05 Feb 2019 at 13:13
Urology surgeons have to publish their stats online - you can check by individual surgeon or by hospital although some surgeons don't comply - you have to wonder what they are hiding. Keep in mind that some of the apparently most successful surgeons cherry-pick patients that are likely to be straightforward with good outcomes while there are others whose outcomes don't look great because they are brave and take on RPs that others would refuse to undertake.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Feb 2019 at 13:16

Hi have they give more detail about where in the prostate the cancer is. It can be slow growing but it can also depend where in the prostate its located ie is it up against the wall of the gland for example

Regarding a surgeon make sure you get one who has done many of these ops preferably in the 1,000’s and do them week in week out

All the best 

Bri

User
Posted 05 Feb 2019 at 15:02

No, not said where it is located.

I am looking to contact 2 surgeons at RM who are high volume and seem highly regarded.

Thankyou 

User
Posted 05 Feb 2019 at 18:05

Hello,

I used the BAUS website to check out the surgeon, it says how many they've done of what kind and complications.   https://www.baus.org.uk/

Without wanting to cause alarm my own opinion is that there is no time better than as soon as possible to have an operation. They kept telling me they're slow growing and 3+4 might be OK, mine was upgraded after the op from 4+3 to 4+4 and one with two 4's is serious stuff.  

It's great to have a top surgeon but I was happy with a 1 a week man who saw me quickly and did it within 10 days of me meeting him. He worked full time as lead urology surgeon in the NHS and at 2 private hospitals and had over 20 years experience.

All the best, Peter

User
Posted 11 Feb 2019 at 13:29

Hi everyone, just an update, we are seeing the consultant at RM tomorrow with surgery pencilled in for next Friday.  Thankyou for your messages, will keep you posted x

User
Posted 12 Feb 2019 at 19:50

Just an update, we met with the consultant at the RMH today, really lovely guy, made us feel very positive, his left side is clear and the Pca is on the lower right side.  He said the PSA was unusually high for the amount of Pca found on biopsy. HB been getting a groin pain which could possibly be prostatitis which may explain the PSA.   So all systems go for next Friday 22nd.  Feeling in a much better place and happy with our choice of surgeon.   Thankyou for your help and advice everyone, this forum has really helped us and am sure will continue to help.

User
Posted 21 Feb 2019 at 14:15

So tomorrow is surgery day, feeling very nervous but remaining confident and just want to fast forward 8 weeks!

We did have a letter with an appointment for a pump demonstration for Wednesdsy just gone, we did cancel as things have happened so quickly we just couldn't make it.  The nurse called yesterday saying he will have to come when he is dry, and that he would have benifitted from going on Wednesday (2 days before his op?). TBH that is the last thing on our mind at the moment, but would it have benefited him? And he is worrying that he will have to fit it in front of someone when he is being shown how to use it.......can someone enlighten us please...Thankyou 

User
Posted 21 Feb 2019 at 14:51

Hi, 
Not sure if this is helpful or not... You don't 'need' to be shown how to use a pump... Most come with an instructional CD and a booklet... 
I had to buy my own pump... so had no one to show me how to use it anyway.. I had no problems  following the instructions, and I'm sure hubby won't either! 
I personally can't see how a pump will benefit hubby before his op...other than to allow him to practice using it for post op rehab... 
As you say,that's the last thing on your mind at present...
Good luck for tomorrow
Best Wishes
Luther

User
Posted 21 Feb 2019 at 14:53

MrsGee

Re the pump, I think it may vary from area to area. In my case the consultant who deals with ED discussed medication and showed us a pump. We then saw a rep from the pump company who explained the pump in more detail and gave us the prescription details. We collected the pump from our pharmacy a couple of weeks later. The pump came with a DVD that used animated characters to demo the pump. So no fitting it in front of anyone and if you were asked, you can always decline.

Hope all goes well, as a final bit of advice, avoid getting constipation, take it easy but keep mobile.

Thanks Chris

Edited by member 21 Feb 2019 at 14:54  | Reason: Not specified

User
Posted 21 Feb 2019 at 15:08
Yes, in some areas of the country the attendance at the session is obligatory if you want a pump on NHS prescription but there is absolutely no reason why it had to be before the op - must just be how they do it in your area.

Good luck!

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

User
Posted 21 Feb 2019 at 15:35

As an aside comment...

I wasn’t shown how to inject using caverject either! 

When my consultant prescribed them and I asked if I needed to be shown how to administer them, he said, just follow the instructions!! 😄

User
Posted 21 Feb 2019 at 17:24

Thanks all......just had a look at the letter and it's for a vacuum device (EVAC) is that the same thing?

User
Posted 21 Feb 2019 at 18:02
yes
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Feb 2019 at 22:59
Just wanted to wish hubby all the best for tomorrow's op.

Chris

User
Posted 06 Mar 2019 at 08:15

Good Morning

Just an update, Husband is 12 days post op, he had a three day stay in hospital due to trapped gas pain under his ribs that was excruciating, had amazing care at the RMH. Surgery went very well, lymph nodes saved and a lot of nerve sparing.  His recovery has been good and tbh you wouldn't know he had had anything done to him apart from the catheter (which was removed yesterday).  Having a lot of leakage which is worrying him a bit, but he is doing his pelvic floor exercises and hopefully it will improve in time.

User
Posted 06 Mar 2019 at 16:58
Sounds very positive apart from the trapped gas.

Keeping up the PVE will see a big improvement in continence. Early days. Best wishes.

Ido4

 
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