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Coping with anxiety over a partner with prostrate cancer

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User
Posted 01 Apr 2018 at 17:38
My husband has had a radical prostatectomy in January 2018. He went back to theatre recently for a dilatation of urethral structure. Has anyone else had experience of this. Unfortunately, urine retention has started again and he has had to self catheterise. Awaiting Consultant appointment. PSA 44 pre op. Gleason score 9. He did not cope with his diagnose at first but we got him through. However I have been very strong but have recently hit a wall as my anxiety levels are high with the worry. I can't seem to switch off. Awaiting radiotherapy but I was absolutely shaken when we saw the Consultant post surgery at the results being so aggressive. I would be glad if any feedback
User
Posted 02 Apr 2018 at 11:45
Kate

It sounds as if your medical team have made you aware of possible problems with the RT and the stricture. Have a look at my profile and my conversation "that was not in the plan". It might raise the anxiety a bit but forewarned is forearmed. I had salvage RT three years after RARP but had a suprapubic catheter fitted in case the stricture closed up, as it happened my flow rate did improve despite RT but the bladder has been compromised, again not the norm and lots of guys have no problems. Although I have a valve on my SPC and tried to keep the bladder working normally but I suspect there is an element of bladder atrophy. How long has or had the OH had a catheter for. Does he use catheters to drain urine or to keep the stricture open?

Thanks Chris

Edited by member 02 Apr 2018 at 11:46  | Reason: Not specified

User
Posted 02 Apr 2018 at 13:07

Was the radiotherapy planned before the operation or is it being done because the results after the op were not good? You are correct that the information sheets etc suggest that incontinence is the most common side effect of RP but strictures are more common after keyhole RP and hernias are also a post-op risk.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 01 Apr 2018 at 19:21

Welcome to the site Katie

I'm sure one of the members who have had retention will get back to you. You could try speaking to one of the designated nurses on this site although I seem to remember they only do certain hours.

The anxiety wall you have hit is probably as a result of having to put on a brave face for so long. Eventually our minds and bodies respond by fighting back.

You need to find a way to switch off ~(much much easier said than done I know.)
Does the hospital your husband attend have a holistic/complementary medicine section where they do massage etc as that can be very helpful in helping you unwind?

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Apr 2018 at 20:17
Katie

I have had numerous dilatations to solve my stricture, it is not uncommon for it to take 3 attempts. My flow rate would start to slow after the procedure and get critical after a couple of months. I carried out self dilatation twice a day in an effort to keep the stricture open. Although my flow was sometimes as little as 0.5 ml/sec I only went into full retention on a couple of occasions following a dilatation when I was not fitted with a catheter. My problems have been quite unusual and in no way normal.

When doing the self catheterization remember so stay calm and do not panic. Forcing a catheter in can cause trauma to the urethra and make things worse.

If he does go into retention and cannot get relief with the catheter get help with out delay.

As Sandra has already said try to control the anxiety.

Thanks Chris
User
Posted 02 Apr 2018 at 09:36

Thank you Sandra and Chris for your kind replies. I understand that after a radical prostatectomy, it's more normal to have incontinence. Through it all my husband has coped least with having a catheter in and he is determined to keep it out at all costs. He does not relish self catheterising but will carry on rather than have a catheter in. The stricture has delayed Radiotherapy with is due now next month.
He is seeing the Consultant this week and we are wondering as the stricture is small, whether it is more a problem with a flaccid bladder due to the catheter being in so long previously. It is good to speak to people who have been through similar situations.

User
Posted 02 Apr 2018 at 11:45
Kate

It sounds as if your medical team have made you aware of possible problems with the RT and the stricture. Have a look at my profile and my conversation "that was not in the plan". It might raise the anxiety a bit but forewarned is forearmed. I had salvage RT three years after RARP but had a suprapubic catheter fitted in case the stricture closed up, as it happened my flow rate did improve despite RT but the bladder has been compromised, again not the norm and lots of guys have no problems. Although I have a valve on my SPC and tried to keep the bladder working normally but I suspect there is an element of bladder atrophy. How long has or had the OH had a catheter for. Does he use catheters to drain urine or to keep the stricture open?

Thanks Chris

Edited by member 02 Apr 2018 at 11:46  | Reason: Not specified

User
Posted 02 Apr 2018 at 13:07

Was the radiotherapy planned before the operation or is it being done because the results after the op were not good? You are correct that the information sheets etc suggest that incontinence is the most common side effect of RP but strictures are more common after keyhole RP and hernias are also a post-op risk.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Apr 2018 at 15:33
Originally Posted by: Online Community Member

but strictures are more common after keyhole RP and hernias are also a post-op risk.



More good news Matron? I am starting to take it all slightly more seriously, but am still smiling - and laughing without a leak - while I can!

They don’t mention any of this s**t in the press when they quote 98% of sufferers are still “alive” after five years, do they?

Cheers, John

Edited by member 02 Apr 2018 at 15:35  | Reason: Not specified

User
Posted 02 Apr 2018 at 16:33
Hi the radiotherapy was planned before surgery due to gleeson score but we did not know for definite until the results.
User
Posted 02 Apr 2018 at 16:38
Hi Chris, catheter was in for about 5 months until.surgery.I dont think it is just the stricture because they said his bladder could have become flaccid due to retention with overflow.Thanks for your reply. I know its not straight forward with everything that has gone on.
 
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