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Hello - first post & feeling scared

User
Posted 22 June 2017 18:58:08(UTC)

Hello,

My precious partner was diagnosed 2 months ago with T3/4 locally advanced PCa, PSA 29, Gleason 10. That's the part that scares me the most, Gleason 10. His Bone scan, MRI and CT scan all showed as clear. He is having keyhole RP surgery next week to be followed by RT to mop up. Whilst in true form he is coping bravely and tremendously on the outside, we are both devastated and bewildered by what is likely to follow. He is more of a get on, deal with and worry when it happens kind of person whilst I am the worrier, researcher, fact finder and seeker of more emotional support. I am having many private and not so private melt downs when I feel I am losing the plot. I feel tremendous loss for our lives as we knew it. At the same time I am trying to remain level headed and muster all the strength I have to get us both through what ever lies ahead. Is any of this normal at this stage when we have barely begun our journey? I have a million questions but at the moment would really appreciate some more understanding around non nerve sparing surgery (which is the only option) and incontinence. Does this mean permanent incontinence is inevitable because the nerves are removed? Thanks for reading  xx

User
Posted 22 June 2017 21:26:17(UTC)

Hello forget-me-not and welcome to the group, but sorry that you find yourself here at all.
First off I think your reaction is perfectly normal. I'm generally a get on with it and worry about things only when they are staring me in the face but I have to say my husband's diagnosis knocked me for 6 and I too had many moments where I just fell apart, in between looking after the kids and everything else. I also totally understand the feeling of grief for the future you thought you were going to have and think this too is quite common. Things did improve as we progressed and got more information and understanding about the treatment though.
As for non nerve sparing surgery and incontinence, this is certainly not a given, more likely to be an issue is erectile disfunction, although there are options here too.
Stay positive and take time out to look after yourself, build your support network and together you will get through it.
Julie

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User
Posted 22 June 2017 21:36:20(UTC)

The non nerve sparing refers to a bundle of nerves on each side of the prostate that are a main part of the erection process. Even if a man has the nerves spared like myself it is unlikely that he will ever return to normal pre op sexual function , like myself , without either mechanical or chemical assistance. Whichever way the cancer is treated it is normally the end of proper erections. If the nerves are completely removed then I'm afraid ED is guaranteed and can only be corrected by vacuum devices or implant or injections into the penis itself. There have been improvements in this area. Loss of penis length is normal also.
The nerves do not affect the continence at all. This is more down to the skill of the surgeon on the day. It seems long term incontinece is getting rarer. Many lucky men like myself were continent almost immediately. Some my age and 2yrs post op are still incontinent. Luck of the draw I guess. Very best wishes and ask all you want. The forum is a wealth ok knowledge.




If life gives you lemons , then make lemonade
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User
Posted 22 June 2017 21:39:56(UTC)
Hi
I just wanted to say that my hubby was diagnosed Dec 2010, PSA 25, spread to bone and lymph and he's still with us. By the way he's a Gleason 10 too. I was terrified (still am) when he was diagnosed, but he has been treated conservatively, still only had zoladex and bicalutimide (that didn't agree with him at all) and a very old drug called diethylstillbestrill and it's only now that this drug is failing. We have been amazingly lucky, our doctors say that there is something in this idea of being positive as it bolsters your immune system. Mind you, if you'd said that to me a few years ago I'd have secretly wanted to punch you!

I'm here to tell you that not all Gleason 10s are as bad as it seems. Let's hope the same applies to your beloved.

Devonmaid xx
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User
Posted 22 June 2017 21:26:17(UTC)

Hello forget-me-not and welcome to the group, but sorry that you find yourself here at all.
First off I think your reaction is perfectly normal. I'm generally a get on with it and worry about things only when they are staring me in the face but I have to say my husband's diagnosis knocked me for 6 and I too had many moments where I just fell apart, in between looking after the kids and everything else. I also totally understand the feeling of grief for the future you thought you were going to have and think this too is quite common. Things did improve as we progressed and got more information and understanding about the treatment though.
As for non nerve sparing surgery and incontinence, this is certainly not a given, more likely to be an issue is erectile disfunction, although there are options here too.
Stay positive and take time out to look after yourself, build your support network and together you will get through it.
Julie

Thanked 1 time
User
Posted 22 June 2017 21:36:20(UTC)

The non nerve sparing refers to a bundle of nerves on each side of the prostate that are a main part of the erection process. Even if a man has the nerves spared like myself it is unlikely that he will ever return to normal pre op sexual function , like myself , without either mechanical or chemical assistance. Whichever way the cancer is treated it is normally the end of proper erections. If the nerves are completely removed then I'm afraid ED is guaranteed and can only be corrected by vacuum devices or implant or injections into the penis itself. There have been improvements in this area. Loss of penis length is normal also.
The nerves do not affect the continence at all. This is more down to the skill of the surgeon on the day. It seems long term incontinece is getting rarer. Many lucky men like myself were continent almost immediately. Some my age and 2yrs post op are still incontinent. Luck of the draw I guess. Very best wishes and ask all you want. The forum is a wealth ok knowledge.




If life gives you lemons , then make lemonade
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User
Posted 22 June 2017 21:39:56(UTC)
Hi
I just wanted to say that my hubby was diagnosed Dec 2010, PSA 25, spread to bone and lymph and he's still with us. By the way he's a Gleason 10 too. I was terrified (still am) when he was diagnosed, but he has been treated conservatively, still only had zoladex and bicalutimide (that didn't agree with him at all) and a very old drug called diethylstillbestrill and it's only now that this drug is failing. We have been amazingly lucky, our doctors say that there is something in this idea of being positive as it bolsters your immune system. Mind you, if you'd said that to me a few years ago I'd have secretly wanted to punch you!

I'm here to tell you that not all Gleason 10s are as bad as it seems. Let's hope the same applies to your beloved.

Devonmaid xx
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User
Posted 22 June 2017 21:56:03(UTC)

Thank you for your kind words and reassurance Julie. I am humbled by all the different journeys, courage, experiences and knowledge that I am reading and so grateful for people sharing x

User
Posted 22 June 2017 22:03:04(UTC)

Thank you Chris for taking the time to respond and for your valuble knowledge. This is encouraging regarding incontinence not being a definite permanent outcome as I know my OH is dreading this the most initially. Again so grateful for having found this forum and I am sure there will be many more questions as time goes by x

User
Posted 22 June 2017 22:11:34(UTC)

Hello Devonmaid and thank you for your response. Very good to know that the Gleason score may not be the thing to focus on but over all positivity (where and when possible and with time hopefully!!!) Very thankful for you sharing your experience x

User
Posted 23 June 2017 10:17:06(UTC)

I wish you well Forgetmenot and strength for the future.

John.

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User
Posted 05 July 2017 19:18:48(UTC)

So a week post surgery and my OH is doing amazingly. He has grown stronger each day and is doing well mentally most of the time. We have even spent a couple of hours during the past 2 days mending on the beach which has been a welcome break for us both. The catheter is the main source of frustration for my OH at the moment and he can't wait to be free from this. No constipation so far which is a relief but he is experiencing passing a lot of water from bowels as well as regular motions (though loose) but hopefully just his system gradually returning to normal along with me encouraging him to drink large amounts of water and juice. Does this all sound normal to any of you lovely gents/ wives/ partners who have experience of this post prostatectomy? Thinking slightly ahead to when the catheter is removed and the inevitable use of pads is upon us I ask some practical advice from anyone who can offer any helpful tips. I am not familiar with gents loos (as a rule I am glad to say!!!) and would like to know how men using pads deal with this practically when out + about. I am told by my OH that men's cubicles don't have bins as a rule so wonder what the practice is to remain discreet and be able to cope practically with ones dignity in tact? Is it a case of carrying plastic carrier bags to put used pads in until they can be binned? Thanks in advance and best wishes to all xx

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User
Posted 05 July 2017 21:03:29(UTC)
Hi Forget me Not
It's a good thing to be prepared for incontinence after the cather removal but some guys are dry pretty quickly. I carried a small backpack with some spare pads and I carried some of the small slightly scented nappy sacks from the supermarket. If the toilets have a disposal bin then fine, if not then I put the nappy sack back in my bag and disposed of it at home. The pads lock the liquid in so they remain dry.
To be truthful there isn't a lot of room in a cubicle to change the pad but you soon adapt.
As regards the bowel situation it might take a little while for things to get back to normal but it is great that he is keeping up a good fluid intake. I found that if things were a bit too loose some dry toast or digestive biscuits appeared to help.
Hope all goes well. There will.be plenty of help and advice on the site should you need it as soon many have been through this and all have different experiences.

Kind regards

Kevan
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User
Posted 05 July 2017 21:51:33(UTC)
Hi Kevan and thanks for your response. Really helpful advice and very much appreciated. Best wishes x
User
Posted 05 July 2017 22:37:37(UTC)

Hi forget me not,

My husband is in a very different position to yours but our consultant has award winning "live results' published on his website re outcomes for both incontinence and ED post surgery.

http://www.birminghamprostateclinic.co.uk/prostate/live-results/

I found this really useful re a pretty complete picture but would have liked a bit more 'drill down' into the dark green zone as the definition here is broad.

But still we found it set the scene which was important to us.

You can search by age and pre surgery function level.

Kind Regards and all best wishes

Clare

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User
Posted 06 July 2017 05:35:18(UTC)

Thank you Clare, will be interested to take a look when I can, much appreciated x

 
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