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Been Trolling for a While

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User
Posted 30 Nov 2023 at 17:11

Sorry, I have been trolling for a while, and the information here is a massive help.  I, at the advice of a friend who has prostate cancer , had a PSA test, it came back at 6.98.  A week later, my GP had me do another one, and it was 6.96, in addition, they did a free PSA which in a man my age should be over 50% and it came back at 7%.  Two weeks later, I had an MRI, and it showed a lesion approx 2cm X 1cm on the prostate so they scheduled a biopsy.  That came back with a lot of cores positive for adenocarcinoma and a Gleason of 7 (4+3) so surgery was scheduled for November 9th.  It was DaVinci using 5 ports.  They did manage to nick an artery and the small intestine while making the initial cuts, but I gather everything else went ok.  The after op pathology came back with positive margin in what would be below the prostate (normally positive margins tend to be on the bladder side), and mucious and cribiform cancers inside the prostate. 

So now, three weeks into recovery, I have horrible incontinence, a lot of discomfort, pain radiating out to my right hip, the cancer was mainly on the right side, fatigue and a general feeling of being useless.

Most of these issues I have read in this forum are not particularly uncommon.  In February, they will do another PSA test to see if the amount of cancer left is causing a problem now, if not, then they will monitor the PSAs for any rise.

I think what annoys me the most is the amount of people prior to the operation who said "I know several people going through, or have gone through that and its simple, in and the remove the prostate, out, and you will be right as rain in no time flat".  To those, unless they have been through this, I beg to differ.  The friend who has prostate cancer and had the same procedure has bounced back very quickly, but he is 15 years younger than me, and I have no idea if they did exactly the same procedure internally.

I am still off work, and will probably be so until after the Christmas break, the company I work for is being very generous with their care. 

I know I don't really have any questions at this time, but I am sure as things move forward I will.

User
Posted 30 Nov 2023 at 18:32

Originally Posted by: Online Community Member

I think what annoys me the most is the amount of people prior to the operation who said "I know several people going through, or have gone through that and its simple, in and the remove the prostate, out, and you will be right as rain in no time flat".  To those, unless they have been through this, I beg to differ.  

Hi Richard.

Sorry that you've ended up here, but welcome anyway.

I agree a lot of people don't realise the impact this disease can have on you. Perhaps it's because it's such a common cancer. Almost everyone knows someone who's had it. They all seem to know someone who's survived it but rarely mention the ones who haven't.

They don't realise that you're probably  incontinent, fatigued, living from one PSA result to another and feeling emasculated. And lets be right were not going to tell them are we.

The only people, other than family, I feel comfortable with discussing my problems with are those who have or who are going through it.

Adrian

 

Edited by member 30 Nov 2023 at 18:42  | Reason: Not specified

User
Posted 30 Nov 2023 at 20:09
We developed a stock answer for all those people who were dismissive when John was diagnosed - to "oh, my dad / brother / neighbour / milkman has prostate cancer and he's fine" John or I would say "that's so great to hear - tell me, how many nappy pads does he use each day?" or "oh, that's wonderful - does he prefer injections or a vacuum pump for getting erections?"

Friends / associates who had never perhaps asked their dad / brother / neighbour / milkman for those details soon learnt to avoid bland platitudes in our hearing!

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

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User
Posted 30 Nov 2023 at 18:23

I'm a couple of weeks ahead of you in the journey. Fortunately my recovery has been smoother than yours, but still building my energy levels back to pre-op levels - so a good reason /excuse for afternoon naps.

Hope things improve for you. 

PS I think you mean lurking, not trolling! 🙂

User
Posted 30 Nov 2023 at 18:32

Originally Posted by: Online Community Member

I think what annoys me the most is the amount of people prior to the operation who said "I know several people going through, or have gone through that and its simple, in and the remove the prostate, out, and you will be right as rain in no time flat".  To those, unless they have been through this, I beg to differ.  

Hi Richard.

Sorry that you've ended up here, but welcome anyway.

I agree a lot of people don't realise the impact this disease can have on you. Perhaps it's because it's such a common cancer. Almost everyone knows someone who's had it. They all seem to know someone who's survived it but rarely mention the ones who haven't.

They don't realise that you're probably  incontinent, fatigued, living from one PSA result to another and feeling emasculated. And lets be right were not going to tell them are we.

The only people, other than family, I feel comfortable with discussing my problems with are those who have or who are going through it.

Adrian

 

Edited by member 30 Nov 2023 at 18:42  | Reason: Not specified

User
Posted 30 Nov 2023 at 20:09
We developed a stock answer for all those people who were dismissive when John was diagnosed - to "oh, my dad / brother / neighbour / milkman has prostate cancer and he's fine" John or I would say "that's so great to hear - tell me, how many nappy pads does he use each day?" or "oh, that's wonderful - does he prefer injections or a vacuum pump for getting erections?"

Friends / associates who had never perhaps asked their dad / brother / neighbour / milkman for those details soon learnt to avoid bland platitudes in our hearing!

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

User
Posted 30 Nov 2023 at 22:14
Prostate cancer is extremely common and you hear about it every day - mostly positive news given the advances in treatments and so those who do not really understand that it is serious abdominal surgery can be very flippant about it. If it goes well then you are still left with ED and incontinence - if something goes wrong then you are left with additional issues as you experienced - in my case I had an 8cm lymphocele that needed further draining.

Then to cap it all, you have to go through the continuous PSA tests hoping for positive results each time.

But at least we are cured or have a positive outlook in the vast majority of cases.

User
Posted 30 Nov 2023 at 22:50
It's good that men can have treatment and post how easy it was for them but it can be a mistake to assume an individual will necessarily have a similar experience to somebody they know at the pub or even on here for example. You can get an idea of overall chance of outcome by reading impartial and statistic based information. But every treatment has potential downsides that even consultants cannot forcee and it is small comfort for a man who has a bad experience which can be temporary or permanent, to know others have done much better.
Barry
User
Posted 05 Dec 2023 at 23:25
Thanks for responding. I am having good moments and bad moments. It is so nice to have a place like this where you can talk about your situation with people who are in similar situations. I think I underestimated the effect of the surgery partially from listening to the "it will be right as rain" group. I know there are those much worse than me, but you still tend to focus on your own condition, perhaps selfish, perhaps human nature.
 
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