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User
Posted 27 Sep 2016 at 15:14
Finally had a biopsy....results were grade 3 on the right side in 5% of samples and grade 3 and 4 in 70% on the left side...PSA is 7.7

Having MRI Abdominal scan on Thursday and Bone Scan as well....

I think the problem is still localised so the way forward will be removal or radiotherapy....

I am drawn towards removal as that would also deal with my BPH that has been a nuisance now for several years....my prostate is 124 gms about the size of a lemon...

Not too worried really just glad to dealing with it all and hopefully get it behind me....

Any advice or comments on the surgery route as opposed to radiation please?...

Thanks, Paul....
User
Posted 27 Sep 2016 at 19:32

Hi Paul my choice was RP as RT would be available after if required as RP is very rarely done after RT , my gleason score was 4+3 =7 as yours, they did find margins and was offered early RT even with a undetectable PSA which I did have , it will be your choice .I feel fit and well do have ed but no other side effects and last test 18 months on still undetectable .all the best Andy

User
Posted 27 Sep 2016 at 20:45

Hi Paul,

My OP is Thursday so I will be able to give some idea of what to expect as will others on here who have been through it, I chose surgery as nobody knows how aggressive the cancer is until they check it in a lab, also I think it is hard to have surgery after RT,
wishing you well 

Paul

User
Posted 27 Sep 2016 at 23:55
Hi Paul
All the best. See my profile. Depends on your fitness. General health. The long term success of RT or RP seems very similar. RT appears to more favourable outcomes re. ED. The op does have increased risk over RT. Ie you are under for 3hrs plus. Again depends if you are employed or live near hospital. . RT as you no doubt know does need sustained visits .. even if actual procedure takes 10 mins. My wife and I chewed it all over and I opted for RP. I may have been lucky with a very skilled surgeon. Full bladder control after catheter removal. I couldn't hoped for more. RT an option should PSA increase. ED work in progress . However nerves do regrow. Albeit slowly. I had no nerve sparing. My choice obviously however I was told those are the areas reoccurrence can occur. Who knows.. I assume you know there are other options than just RT and RP.. something we didn't really explore in detail.
User
Posted 28 Sep 2016 at 02:13

Hi Paul,

From my biopsy I was given a staging of T2a (organ confined) and I was expecting surgery. However, following MRI scan this was upgraded to T3A (locally advanced) and the surgeon was most reluctant to operate so I had RT instead. Hopefully, yours will still be considered confined following MRI scan, though scans cannot be relied on 100% so surgery can reveal the cancer has spread more than was thought even from looking at MRI scan beforehand. From the 'Tool kit' and what you have read about the pros and cons of treatment you will decide which treatment option open to you to go for. Your enlarged Prostate could be a factor but seek your consultant's opinion on what he/she feels is best in your case.

Barry
User
Posted 05 Oct 2016 at 19:14

all the best Paul for your op Andy

User
Posted 06 Oct 2016 at 09:09

Hi Paul,

I have just had the OP exactly 1 week ago today, I too had quite a large prostate and only had 2 options, prostatectomy or RT, I decided on the OP as I wanted it out and as far as I know a lot of surgeons will not operate after RT, anyway the OP was nowhere near as bad as I had imagined it would be, the worst was the gas which they pump into you for access to the prostate, a few good farts and things were a lot better, catheter not really a problem it is nice not to have to get up at night, going to go out for a walk today, just take one step at a time there is no rush,

all the best for your OP,

Paul

User
Posted 18 Oct 2016 at 15:36

My leaking is a lot better today and I seem to be able to pass urine when I feel the need to go and only have a few leakage issues, although there is also some blood discharge, but not sure if that is because I am still very sore where the catheter had been inserted.


Had my first shower today and it was heaven, never thought I miss showering as much as I have done. Drove my car for the first time in three weeks so all progressing nicely. 


Will continue to use pads at night and during the day but hoping the progress continues to be rapid.


Good luck

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User
Posted 27 Sep 2016 at 19:32

Hi Paul my choice was RP as RT would be available after if required as RP is very rarely done after RT , my gleason score was 4+3 =7 as yours, they did find margins and was offered early RT even with a undetectable PSA which I did have , it will be your choice .I feel fit and well do have ed but no other side effects and last test 18 months on still undetectable .all the best Andy

User
Posted 27 Sep 2016 at 20:42

Thanks Andy, you have given me confidence that I am going the right way. Hopefully all will be settled down fairly soon....Paul.

User
Posted 27 Sep 2016 at 20:45

Hi Paul,

My OP is Thursday so I will be able to give some idea of what to expect as will others on here who have been through it, I chose surgery as nobody knows how aggressive the cancer is until they check it in a lab, also I think it is hard to have surgery after RT,
wishing you well 

Paul

User
Posted 27 Sep 2016 at 23:55
Hi Paul
All the best. See my profile. Depends on your fitness. General health. The long term success of RT or RP seems very similar. RT appears to more favourable outcomes re. ED. The op does have increased risk over RT. Ie you are under for 3hrs plus. Again depends if you are employed or live near hospital. . RT as you no doubt know does need sustained visits .. even if actual procedure takes 10 mins. My wife and I chewed it all over and I opted for RP. I may have been lucky with a very skilled surgeon. Full bladder control after catheter removal. I couldn't hoped for more. RT an option should PSA increase. ED work in progress . However nerves do regrow. Albeit slowly. I had no nerve sparing. My choice obviously however I was told those are the areas reoccurrence can occur. Who knows.. I assume you know there are other options than just RT and RP.. something we didn't really explore in detail.
User
Posted 28 Sep 2016 at 02:13

Hi Paul,

From my biopsy I was given a staging of T2a (organ confined) and I was expecting surgery. However, following MRI scan this was upgraded to T3A (locally advanced) and the surgeon was most reluctant to operate so I had RT instead. Hopefully, yours will still be considered confined following MRI scan, though scans cannot be relied on 100% so surgery can reveal the cancer has spread more than was thought even from looking at MRI scan beforehand. From the 'Tool kit' and what you have read about the pros and cons of treatment you will decide which treatment option open to you to go for. Your enlarged Prostate could be a factor but seek your consultant's opinion on what he/she feels is best in your case.

Barry
User
Posted 28 Sep 2016 at 08:48

Many thanks to all the replies...good to get a response and share our troubles.....will know more next week and then decide on the best way forward....my general health and fitness are both good and I don't have any other issues or take any medication....so all the choices should be ok.....RP does appeal though as it will also sort out the BPH which is a quality of life affecting issue.....constantly having to be aware of where the toilets are etc......Paul

User
Posted 28 Sep 2016 at 08:57
Hi Paul,

I too had RP.. open surgery.

Check out my profile for more details.

Good luck with your treatment.

KRO..
User
Posted 30 Sep 2016 at 06:39

MRI and Bone scans went all ok yesterday, but when I arrived home I had a copy of the letter sent to my GP regarding the situation etc.....the Gleason Score on my left side was 4+3 in 70% of the samples, not 3+4.....both add up to 7 but from what I can find out this is a more serious issue..?
The hospital team have their weekly conference today and I should get a call to go in and see the Urologist next week for the fuller picture and the options for moving forward. I am quite scared at the moment that I am facing a real threat to my life and that the situation could deteriorate quickly.....hopefully I am wrong?.....Paul.....

User
Posted 30 Sep 2016 at 07:16
Hi Paul,

When you next see the specialist you will have a clearer picture of your situation. If possible take someone with you to listen to what they say as this helps, also take notes. Regarding the Gleason score have a look at this link:

http://prostatecanceruk.org/prostate-information/getting-diagnosed/what-tests-will-i-have-at-the-hospital

In the meantime order the Toolkit from the publications page on this website.

Best wishes,

Arthur
User
Posted 30 Sep 2016 at 07:18

Hi Paul
You'll be glad to know that nothing moves quickly with this damn plague. Endless worrying waiting. Except for the very unfortunate few it seems. Your Gleason score remains at 7. It just means the majority of cells found were 4 aggressive , and the next majority 3 aggressive. Slightly worse but far better than an 8 or 9. Good luck with the results and read all of the toolkit.
Chris

User
Posted 05 Oct 2016 at 08:40

Had my meeting yesterday with the Urologist and it went well considering where we all are. The PC is confined to my Prostate.....just.....and the Bone Scan was 100% clear.....
I have opted for removal and should be dealt with within the next 3 weeks. Due to the size of my Prostate...124gms....the Urologist has told me that open surgery may be preferable to avoid any damage to the wall of the bowel etc.....also there will be 2 surgeons present during the procedure.
Radiotherapy was offered but I was told that due to the size of the Prostate the amount and area of coverage being signifincant it would cause/raise other issues.....I had already decided that if removal was offered then that was going to be my choice as it gets the thing out of me, cures BPH and still leaves RT as an option should things kick off again in the future....
So....I slept well last night, relieved that the news was good and although I don't relish surgery it will be over fairly quickly and hopefully life can return to a greater level of normality......Paul

Edited by member 05 Oct 2016 at 08:42  | Reason: Not specified

User
Posted 05 Oct 2016 at 19:14

all the best Paul for your op Andy

User
Posted 06 Oct 2016 at 09:09

Hi Paul,

I have just had the OP exactly 1 week ago today, I too had quite a large prostate and only had 2 options, prostatectomy or RT, I decided on the OP as I wanted it out and as far as I know a lot of surgeons will not operate after RT, anyway the OP was nowhere near as bad as I had imagined it would be, the worst was the gas which they pump into you for access to the prostate, a few good farts and things were a lot better, catheter not really a problem it is nice not to have to get up at night, going to go out for a walk today, just take one step at a time there is no rush,

all the best for your OP,

Paul

User
Posted 06 Oct 2016 at 09:55

Many thanks for the support and words of help .....especially to Paul who has just gone through what awaits me.....fear of the unknown is


sometimes far worse that the experience of the reality....I was dreading the MRI, Biopsy and Bone Scans and they all turned out to be of no


real consequence really and nothing to get worked up about.


This operation is a bit more serious but if I feel as Paul does one week on then I shall be a very happy person.....Paul...

User
Posted 06 Oct 2016 at 11:00

Hi Paul,

I have just read your post again and it says that you are having open surgery, I had robotically assisted radical prostatectomy, but I have read on this site of people that have had open surgery with the same results in fact some surgeons prefer it, so good luck with the OP,

best wishes

Paul

User
Posted 16 Oct 2016 at 06:57

Got my date for the operation....2/11 in Shrewsbury, feeling quite calm at present now that the plan is set out, will be glad to get it over with and come out the other side on the road to better health and future.....Paul.....

User
Posted 16 Oct 2016 at 07:36

Hi Paul,

I too felt better when a decision had been made, but I was really nervous as the OP got nearer until I was on my way to theatre then it was oh well no going back now then approx 4.5 hours later I was in recovery, the worst thing about the OP is the gas they pump into you for access to the prostate, it is just uncomfortable but a few good farts soon relieves it, good luck with the OP,
best wishes

Paul

User
Posted 16 Oct 2016 at 16:37

Paul, just a note to say that if you are having open RP they won't be filling you up with gas in the same way as if you were having keyhole, so hopefully those particular side effects will not affect you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Oct 2016 at 10:38

Hi guys,

Had a bit of a shock last night, 2 weeks post OP I had blood in the bag, I have not had any blood at all until now, it has cleared now, I  phoned the hospital they said it was part of the healing process but keep an eye on it, bit scary I can tell you I wish they would warn you of these things, 

bets wishes

Paul

User
Posted 17 Oct 2016 at 19:10

Hi Paul
Yes it happened to me a few time and also a little discharge around the penis end of the catheter, and yes you are never warned to the full extent which is frustrating as forewarned is forearmed.
How long will you keep the bag?
Mine was nearly three weeks (removed today yippee) but am getting incontinence issues which hopefully will not last too long.
I too had open RP but did not know until I woke up post op, hell of a shock but I am sure it was worth it.
Good luck with your recovery
HappyH

User
Posted 17 Oct 2016 at 22:22

Will keep the catheter for 3 weeks comes out on the 24th, hooray, glad you are OK,

Paul

User
Posted 18 Oct 2016 at 06:50

Don't be surprised if you do leak when the catheter is removed. I was a bit shocked especially when the nurse said it was normal and would be ok after a while.


My wife then had to rush off to the local chemist to get incontinent pads and I also purchased some tight underpants, which has helped but it is a bit alarming just how easily and continuously my urine is flowing, just hope I can get it under control. But it is still better without the catheter being attached to me.  


Just another step on the road to full recovery and also makes you understand just how big the full removal is, which is something i don't think I really understood before the op.


I think we have both had very similiar operations and experiences, I am just turned 65 and this has been the first major operation of my life, so it has been a huge shock to me, but having others who have experienced this on this website is such a help.


Good Luck for the 24th

User
Posted 18 Oct 2016 at 07:26

Hi Paul, because my prostate was puuting a squeeze on me and causing chronic retention issues I was only given two choices. Remain on Active Surveillance put up with my existing symptoms that would undoubtedly get worse as my prostate continued to grow or have it removed by robotic surgery whilst I had age on my side to aid my recovery!
I chose to have the surgery which was performed on Monday 10th October!
My only advice it not to have any regrets about your decision and take everyday as it comes. Good luck.

Brian.

User
Posted 18 Oct 2016 at 09:00

I am expecting to leak a lot when the catheter comes out, I already have a supply of pads, going to be expensive I think, yes I think our OPs and recovery are very similar and I am also 65 and this was also my first major OP and only my second in my life, had a hernia OP about 15 years ago,

best wishes

onwards and upwards, one day at a time,


Paul

User
Posted 18 Oct 2016 at 09:07
Think positive mate.. we are all different - but some on here, me included, did not leak a lot and were dry relatively quickly.

KRO...
User
Posted 18 Oct 2016 at 10:51

That would be nice

Paul

User
Posted 18 Oct 2016 at 15:36

My leaking is a lot better today and I seem to be able to pass urine when I feel the need to go and only have a few leakage issues, although there is also some blood discharge, but not sure if that is because I am still very sore where the catheter had been inserted.


Had my first shower today and it was heaven, never thought I miss showering as much as I have done. Drove my car for the first time in three weeks so all progressing nicely. 


Will continue to use pads at night and during the day but hoping the progress continues to be rapid.


Good luck

User
Posted 18 Oct 2016 at 17:12

great news, I hope I get on as well as you when I have my catheter out on Monday,

best wishes

Paul

User
Posted 18 Oct 2016 at 18:43
P

My surgeon is convinced my problems all started from the trauma caused by the nurse swiftly pulling the catheter out when it got stuck. One of my Uro Nurses said when she was on the Urology ward many years ago, if catheters got stuck they made guys walk around until they dropped out.


Thanks Chris

Edited by member 18 Oct 2016 at 18:43  | Reason: Not specified

User
Posted 18 Oct 2016 at 19:19

Ouch!!! I bet that really hurt.


Thankfully mine was a little uncomfortable but not really painful. But then the waterworks started which was a shock, but it does seem to be settling down.


Sorry to hear about your problems Chris I hope you make a speedier recovery from now on

User
Posted 21 Oct 2016 at 17:51

Hi , I'm a bit wound up about the catheter 'event'.....I had a flexible cystoscope once, and I was not impressed to say the least.....especially going to the toilet fir the first time.....it was an experience of pain I do not wish to repeat.....so.....how bad or not is the catheter experience.....just uncomfortable or a real pain?......it sounds all a bit cumbersome and difficult....then again I was wound up about the biopsy and to be honest it was a non event and nothing to it.....Help! Paul.....

User
Posted 21 Oct 2016 at 18:43
Hi Paul
I have to say that I didn't find the catheter to be a problem. Perhaps I was lucky but there was no pain or discomfort from it. We are all different and I guess we all tolerate these things in different ways. Hopefully you'll be fine.

All the best.

Kevan
User
Posted 21 Oct 2016 at 18:46

Hi Paul the catheter was a relief when I had it removed as it did cause discomfort and a bit of pain but nothing you can,t live with and is only in for about two weeks if all goes well ,so stop working yourself up .Andy

Edited by member 21 Oct 2016 at 18:48  | Reason: Not specified

User
Posted 21 Oct 2016 at 18:51
Hello Paul, the catheter experience for me was a non event, it was a nuisance ,no pain, just in the way, especially when having a bath. If you have a shower in your home then it would be much easier to wash.
Going out was fine, the catheter is strapped to your leg just keep an eye on the level, you would need to empty it quite often though, and at night you use a bigger catheter on a little stand and empty it in the morning. The catheter was strapped to my left leg and sleeping on the left side of the bed it was easier at night, be careful, try to sleep on your back or side otherwise you could kink the pipe and stop the flow of urine into the bag.
I had no pain only iritation only where the catheter entered the penis, however keep this clean , when I had a bath at night I made sure I washed the entry point with cotton buds with simple soap.
Hope this is reassuring and calms your fears.

James
User
Posted 21 Oct 2016 at 19:32

Thanks to all for the prompt responses, I hadn't thought about sleeping.....I tend to sleep on my left side....if I lie on my back I just don't go to sleep....so would the bag be best on my right leg?......Paul....

User
Posted 21 Oct 2016 at 20:36
P

Have a look at my post from the 20th August in "treatment experiences" by faffar888 there is quite a comprehensive description of my catheter experiences and care.

I wore pyjama bottoms to save things getting tangled and used an additional strap around the ankle to save the pipe being pulled.

None of my many numerous catheter removals have been painful or even uncomfortable,feels slightly weird, even the trauma caused by the swift removal of the first catheter was not uncomfortable. As others have said it is a non event.

Thanks Chris

Added,I sleep on my left side and had the bag on the left leg.

Edited by member 21 Oct 2016 at 20:38  | Reason: Not specified

User
Posted 21 Oct 2016 at 20:53
Paul,
Your night in hospital after operation with catheter fitted will give you some experience of which side to have catheter strapped, also good tip from colwickchris about pyjama bottoms.

James
 
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