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PC in Tirol

User
Posted 28 Aug 2018 at 09:47

Hi Everybody,


I was diagnosed in 2016 when I was 54 with Prostate cancer psa 4 and G6, these figures deteriorated until July 2018, psa 5.6 and G7, out of the options given to me by the specialist here in Austria, I have opted for surgery by Laparoscopy at the end of September and I must admit to being more than a little anxious that firstly, I have made the correct decision and secondly, how will it go?


I find that during the daytime when I am surrounded by my wife and children I can maintain a reasonable level of positivity, however, at 3am this rapidly vanishes but I guess that I am not alone here.


I am trying to remain as fit as possible pre op and hope that this will be of some benefit to the recovery phase. I am most worried about  incontinence during recovery, will I be incontinent for a few days, weeks, months or years? I will just have to be patient and see what happens.


I realize that I am in a far better position than many here but even so these are worrying times.


Regards


Richard


 

User
Posted 28 Aug 2018 at 10:21

Hi Richard, and yes, 3am is usually a problem.


Of course, there is a risk of incontinence, but for many it's only temporary.


That's what worried me a LOT, but with a Gleason of 7, with a PSA slightly higher than yours, all treatment options for me were recommended, surgery😗RT or Active surveillance. I took the middle route and had RT with hormone treatment. 


I think the choice is pretty dependant on your individual personality and your attitude to risk.


There's no right answer to this conundrum.

Edited by member 28 Aug 2018 at 10:24  | Reason: Not specified

User
Posted 28 Aug 2018 at 23:01
OK let's be clear it's a serious operation and it has consequences BUT permanent incontinence is unusual. Make sure you are happy with your surgeon his/her skills are vital for success.

Surgery is still IMHO the gold standard by which all curative intent treatments are judged.

Be happy with your choice once it is made and do all the prep and rehab!
User
Posted 29 Aug 2018 at 00:15

Gruss Gott, Richard - sorry, can’t find the umlaut.


I had a prostatectomy at the age of 46, two years ago.  I was T3b and Gleason 9.  The surgery was relatively painless.  The catheter gave me a pile of pain but from other men’s accounts, the catheter is usually little more than an inconvenience.  Incontinence really wasn’t an issue.  I used pads for a few days but they were mainly dry.  Try not to worry.  


I tend to worry when I waken upand sometimes feel very angry.  I often think that cancer is a mind game and it does take some getting used to.


Best wishes for your surgery and do stay active on the forum, it is a great source of information and support.


Ulsterman

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User
Posted 28 Aug 2018 at 10:21

Hi Richard, and yes, 3am is usually a problem.


Of course, there is a risk of incontinence, but for many it's only temporary.


That's what worried me a LOT, but with a Gleason of 7, with a PSA slightly higher than yours, all treatment options for me were recommended, surgery😗RT or Active surveillance. I took the middle route and had RT with hormone treatment. 


I think the choice is pretty dependant on your individual personality and your attitude to risk.


There's no right answer to this conundrum.

Edited by member 28 Aug 2018 at 10:24  | Reason: Not specified

User
Posted 28 Aug 2018 at 23:01
OK let's be clear it's a serious operation and it has consequences BUT permanent incontinence is unusual. Make sure you are happy with your surgeon his/her skills are vital for success.

Surgery is still IMHO the gold standard by which all curative intent treatments are judged.

Be happy with your choice once it is made and do all the prep and rehab!
User
Posted 29 Aug 2018 at 00:15

Gruss Gott, Richard - sorry, can’t find the umlaut.


I had a prostatectomy at the age of 46, two years ago.  I was T3b and Gleason 9.  The surgery was relatively painless.  The catheter gave me a pile of pain but from other men’s accounts, the catheter is usually little more than an inconvenience.  Incontinence really wasn’t an issue.  I used pads for a few days but they were mainly dry.  Try not to worry.  


I tend to worry when I waken upand sometimes feel very angry.  I often think that cancer is a mind game and it does take some getting used to.


Best wishes for your surgery and do stay active on the forum, it is a great source of information and support.


Ulsterman

User
Posted 29 Aug 2018 at 09:09

Thanks for your comments gents, it's good to get perspectives from other people with more experience. I am seeing the surgeon for the first time in a couple of weeks so that should be interesting, I will have plenty of questions for him.


For me during this time it seems important to keep busy, so I'm decorating the house and doing all the small jobs that always need doing.


And Ulsterman, ü on a British keyboard is ALT and 252!


Richard

User
Posted 29 Aug 2018 at 10:00

This might be difficult to believe, but as time goes on we think about it less and less, then hardly ever at all.


This is a cancer like no others, it's not one which rapidly runs amok around your body. When it's identified at an early stage there's every chance that even if you did nothing, you would live many many years. I was chatting to a friend the other day, and he said something along the lines of "tish!, I was diagnosed 15 years ago, but never bothered"


In some circles, it's not even called cancer, rather Indolent lesions. The big scary "C" word it isn't.


Having said that, my position was very similar to where you are at, I took the middle option of HT/RT, but even now still (rarely) wonder if I should have just taken the path of active surveillance.


But as the axiom goes, "Yer pays yer money and yer takes yer choice"

User
Posted 29 Aug 2018 at 10:21

Originally Posted by: Online Community Member
This is a cancer like no others, it's not one which rapidly runs amok around your body.


 


True for many men but not all - as per the members we have had here who died in their 40s or 50s - and the couple of members in their 30s with extensive spread. Generalisation is useful but not if it fails to acknowledge the seriousness of the disease.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Aug 2018 at 10:23
Richard, with a G6 rising G7 and a couple of years of AS under your belt, have you considered brachytherapy?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Aug 2018 at 10:59

Hello Lynn, hello Tykey,


Thanks for your posts, firstly I think that I don't have the mental make up to 1- have the knowledge that I have cancer and 2- do nothing about it,  be able to put it to the back of my mind and carry on with my life as if nothing had happened, especially when other options are available.


Regarding brachytherapy Lynn, my understanding from the specialist that I have so far seen is that having the cancer treated (rather than removed) may compromise the option of surgery at a later stage should the initial treatment not be successful. As you will no doubt by now have surmised, I am no expert on prostate cancer and just want to deal with it in the most effective way possible (as I'm sure everyone else does to) because of my lack of knowledge I am largely being guided by the specialist who I do believe is competent.


I think and hope that for me surgery is the correct choice but the words of Mr. Kierkegaard seem very pertinent at this time, I wonder what I will think in 2,3 or 6 months time???


Regards


Richard

User
Posted 29 Aug 2018 at 12:56

Originally Posted by: Online Community Member
my understanding from the specialist that I have so far seen is that having the cancer treated (rather than removed) may compromise the option of surgery at a later stage should the initial treatment not be successful.


 


This is true to an extent - there are fewer surgeons that would be prepared to remove a prostate that has been irradiated. But in a way, it is flawed thinking to choose a treatment based on what might happen if it fails. Statistically, if surgery fails and you need salvage RT, the chance of full remission is low. Best decision making comes in the order: 1) which treatment is most likely to achieve full remission 2) can I live with the potential side effects of that treatment 3) if not, which is the next best option. For a contained prostate cancer at G6/7 T1 or T2a, all treatments (AS, surgery, IMRT and brachy) have almost identical success rates but different guaranteed and potential side effects. Many urologists believe that in a few years, RT will be the gold standard and people will look back and be horrified that we used to remove prostates!


 


If you are confident in your surgeon then that is the most important thing but don't assume it is your only option. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Aug 2018 at 13:14

Which krankenhaus are you under? Is it one of the specialist Krebshilfe centres?

Edited by member 29 Aug 2018 at 13:18  | Reason: Not specified

User
Posted 29 Aug 2018 at 13:20

Hi Richard,


I'm pretty much the same age as you (I'm 56) and was diagnosed back in May with T2C G3+3 cancer with a very small amount of G3+4. In my case, though, the regional MDT and the urologist recommended against surgery because my PSA is (or was in May, at least) 32, so I've gone down the HT+RT road.


I think the important thing is to be comfortable with the decision you reach. Only you know what's right for you. In my own case I was strongly minded not to have RP because of the potential long-term incontinence side-effects, so it suited me perfectly when everyone involved recommended RT, but everyone's different, and what's right for me isn't necessarily what's right for you. Unfortunately it is a decision that only you can make, but whatever decision you reach, it is important that you're comfortable with it. Lying awake at 3am worrying about it suggests that perhaps you might not be?


All the best,


Chris

Edited by member 29 Aug 2018 at 13:21  | Reason: Not specified

User
Posted 30 Aug 2018 at 08:35
Hi there,

Lynn comments above are really pertinent. On diagnosis with a large amount of low grade PCa ( G6 (3+3) by a surgeon my 54 year old husband was immediately recommended removal with the same reason re ‘I can do it now, but after further treatment I won’t be able to’. The full side effects were not explained but this site led us to understand them fully. In addition we read ‘ the invasion of the prostate snatchers’ so got a full history of the RP procedure.

We are lucky and were able to afford an alternative not available in the UK ( three consolutants all agreed he had to do something). Within the limits of NHS funding we would have explored brachi fully before making a final decision.

For us we were not sure my husband could live with the definite side effect of ED and the prospect of any incontinence makes RP a major major decision.

This decision should never be rushed in my opinion and only entered into when all other available options have been explored fully.

It all works out fine for some but is such a big decision with such a lot of quality of life implications I personally do not think surgeons should be allowed to give a diagnosis and immediately make a RP recommendation. The process should be much more considered.

Good luck with your decision making but Lynn made a really good posting and quick RP decisions always worry me.

Regards

Clare
User
Posted 30 Nov 2018 at 11:44

Hi Everyone,


My surgery was carried out on the 1st October and I thought That I would update you on progress.


My prostate was removed by laparoscopic surgery in the specialist clinic in Hall / Tirol. The catheter was removed after 4 days and I was discharged the day after. I was dry from more or less day 1 which pleased me greatly.


The surgeons were happy with the report from the histologist and I had my first PSA test on Tuesday this week, got the result yesterday which was 0.01 - so far so good. Must go for the next test in February 2019.


fitness is improving, now walking 30 or 40 miles per week with no pain and I had my first session back in the climbing hall on Wednesday, also no pain, just a little stiffness from no real activity for so long.


All in all, I'm satisfied with progress even though I know it will be several months before I am back to normal fitness levels. I feel as confident as possible at this early stage that the chances are good of no recurrence.


Good luck to everyone


Richard

User
Posted 30 Nov 2018 at 12:55

Interesting, Richard to see slightly different practices in different countries.


The norm here is for catheterisation for around ten days or longer and discharge the next day or the day after following laparoscopic surgery. Moreover, they don’t usually test PSA for up to six weeks post-op (correction - just realised you were around seven weeks post-op for PSA, so the same). Great news on the continence front and PSA result.


So you were at the Landeskrankenhaus, Hall im Tirol? They seem to have done a good job. Were you offered the option of the Krebshilfe Tirol in Innsbruck, or is that more of a radiotherapy centre?


I must say, we have always been very impressed with the Austrian ‘NHS’ whenenever needed, due to various ski-ing ‘incidents’........no four-hour wait in A & E there, more like four minutes.


I did read a paper somewhere that there was little difference between short-term catheterisation and longer in terms of continence, as you are a case in point. Bet you were glad to be rid of the bloody thing!


Best of luck with your recovery. Climb every mountain!


Cheers, John.

Edited by member 01 Dec 2018 at 03:17  | Reason: Not specified

User
Posted 01 Dec 2018 at 07:22

Hi John,


Thanks for your reply and good wishes.


The options for surgery that were given to me were


1. Laparospic surgery in Hall 2. Normal open surgery in Innsbruck or 3. Robotic surgery somewhere else, I can't remember where but it was a long way away.


I decided on 1. because of the speed of recovery and closeness to home also I was very impressed with the surgeons in Hall, I was able to talk to both of the operating surgeons pre-op. It is normal here for there to always be 2 surgeons in the operating theatre, I don't know if that is standard practice elsewhere but it seems a good idea.


Regarding the catheter, I didn't really have much grief from it, more an inconvenience when trying to get about from day 2 onwards. The catheter was removed after a dye had been infused into my bladder, removal then took place under an x ray/ scanning machine to make sure there was no internal leakage.


Cheers


Richard


 


 

User
Posted 01 Dec 2018 at 07:57
There were two surgeons present during my operation - the Professor playing on his X-Box and another one hovering over my corpse like a Banshee, changing the various bits and bobs on the end of Da Vinci’s robotic arms. There was probably a team of six or seven all told.

I have never heard of the dye / X-Ray catheter removal procedure before, so that must be an Austrian speciality, like kaiserschmarrn!
User
Posted 02 Dec 2018 at 06:01

Originally Posted by: Online Community Member
the Professor playing on his X-Box and another one hovering over my corpse like a Banshee


Haha, 


I had the same professor at Guilford as you had John. 


I wouldn't play any game against him on an X-Box considering how many RP's he does each year!  


 


 

 
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