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Recently diagnosed with prostate cancer

User
Posted 21 Dec 2017 at 21:18
I’ve just recently been diagnosed with T2c prostate cancer, I’m 47 and lucky enough to have private health care and will most likely be having a robotics assisted nerve sparing prosectomy. My main worry is incontinance post op especially being in the fire service.
User
Posted 21 Dec 2017 at 22:09

Welcome to the site Aerobinson01

If you go to Publications on this website you will be able to look at/The Toolkit and there may well be information there that would help.

I'm sure you'll get advice from the men on here who have had the operation.

I would just add that just because one man suffers incontinence it doesn't mean they all do. Some men are dry, or nearly dry, right from the start.

You will probably be advised to start doing Kegel exercises to strengthen the pelvic floor muscles

Good luck with the op and ask away any questions you want answers to no matter how odd they might sound to you

Sanbdra

We can't control the winds - but we can adjust our sails
User
Posted 22 Dec 2017 at 08:44

I had robotic January last year aged 54. My clinical stage was T2c. Gleeson 3+4 psa 6.3. I was advised surgery over bracy by my local Uro. I had full confidence in the surgeon who was excelent (addenbrooks) in both his reputation and my experience of his personality, advice, follow up etc... The option of open surgery was never mentioned by my local Uro or the Surgeon. The Surgeon was only able to carry out nerve sparing on one side and we knew that in advance. He told me that it was about 50\50 chance of perminant ed. Post op pathology upgraded to Pt3 locally advanced due to extracapsuler extension. I was extremely concerned about incontenance and ed and right up until the anesthetic took over I was not convinced that I was making the right decision. Post op the catherter was removed after one week and I was dry at night. During the day was only slight leakage using level 2 pads for about three weeks and then level 1 for another 3 weeks from then on dry. ED is still a problem.
I didnt know what Lyn has said about better outcomes re side effects with open. If I had, with hindsight open surgary would have been my choice due to the ED. A longer recovery time is a small price to pay for the reduced risk.
Also worth noting is my psa had been creeping up for 9 years. Had my GP referred me sooner I believe my pc would have been less advanced allowing full nerve sparring or bracy and less risk of ed.
One of my other fears was catherter removal. I was over thinking it and worried about the bladder end being pulled through the new joint after just a week. When the nurse arrived I insisted that I would pull it out myself with her supervising. She agreed without any objection. I was thinking that if I felt any resistance or pain I would be in control of the pressure applied. I was just terrified of damaging that joint. She deflated the ballon and lying on the bed I slowly pulled it out. I never felt a thing, not even the slightest sensation until a very slight awarness\feeling at the last centimetre. I had feared that moment all along and had I known I could be in contol myself would have been far less worried.

Be sure to get all of the info on all of the options then make your decision, be happy with it and dont look back with regrets.
Its difficult so take your time.

All the very best of luck with whatever you choose

Cheers Bill

Edited by member 22 Dec 2017 at 08:47  | Reason: Not specified

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User
Posted 21 Dec 2017 at 22:09

Welcome to the site Aerobinson01

If you go to Publications on this website you will be able to look at/The Toolkit and there may well be information there that would help.

I'm sure you'll get advice from the men on here who have had the operation.

I would just add that just because one man suffers incontinence it doesn't mean they all do. Some men are dry, or nearly dry, right from the start.

You will probably be advised to start doing Kegel exercises to strengthen the pelvic floor muscles

Good luck with the op and ask away any questions you want answers to no matter how odd they might sound to you

Sanbdra

We can't control the winds - but we can adjust our sails
User
Posted 21 Dec 2017 at 22:16

Try to see a couple of specialists before you make a final decision. Surgery isn't the only option and being a young man, you may prefer a treatment that is less likely to have serious side effects. Also, don't assume that robotic RP is better than open RP - new data has shown that open surgery has slightly better outcomes in terms of side effects, recurrence, need for adjuvant treatment and 10 year survival. The benefit of robotic is that you are in hospital for a shorter time and possibly back to work sooner.

My husband was 50 and opted for open RP but that was partly because he had existing abdominal scars from having his appendix removed - existing scarring makes keyhole problematic sometimes. If he could have had brachytherapy he would have done but at the time he was considered too young. Now they don't seem to have a lower age limit for brachytherapy.

Also, if you are having it done privately, check what you will and won't be entitled to afterwards. John had his op privately but that meant he had no access to a nurse specialist, no help from district nursing team, no entitlement to things like the incontinence service or counselling and we really had to fight to get treatment for ED. If we had known that was how our CCG works, we would have had the private consultation but gone back into the NHS for the actual operation.

Edited by member 21 Dec 2017 at 22:20  | Reason: Not specified

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

User
Posted 22 Dec 2017 at 08:44

I had robotic January last year aged 54. My clinical stage was T2c. Gleeson 3+4 psa 6.3. I was advised surgery over bracy by my local Uro. I had full confidence in the surgeon who was excelent (addenbrooks) in both his reputation and my experience of his personality, advice, follow up etc... The option of open surgery was never mentioned by my local Uro or the Surgeon. The Surgeon was only able to carry out nerve sparing on one side and we knew that in advance. He told me that it was about 50\50 chance of perminant ed. Post op pathology upgraded to Pt3 locally advanced due to extracapsuler extension. I was extremely concerned about incontenance and ed and right up until the anesthetic took over I was not convinced that I was making the right decision. Post op the catherter was removed after one week and I was dry at night. During the day was only slight leakage using level 2 pads for about three weeks and then level 1 for another 3 weeks from then on dry. ED is still a problem.
I didnt know what Lyn has said about better outcomes re side effects with open. If I had, with hindsight open surgary would have been my choice due to the ED. A longer recovery time is a small price to pay for the reduced risk.
Also worth noting is my psa had been creeping up for 9 years. Had my GP referred me sooner I believe my pc would have been less advanced allowing full nerve sparring or bracy and less risk of ed.
One of my other fears was catherter removal. I was over thinking it and worried about the bladder end being pulled through the new joint after just a week. When the nurse arrived I insisted that I would pull it out myself with her supervising. She agreed without any objection. I was thinking that if I felt any resistance or pain I would be in control of the pressure applied. I was just terrified of damaging that joint. She deflated the ballon and lying on the bed I slowly pulled it out. I never felt a thing, not even the slightest sensation until a very slight awarness\feeling at the last centimetre. I had feared that moment all along and had I known I could be in contol myself would have been far less worried.

Be sure to get all of the info on all of the options then make your decision, be happy with it and dont look back with regrets.
Its difficult so take your time.

All the very best of luck with whatever you choose

Cheers Bill

Edited by member 22 Dec 2017 at 08:47  | Reason: Not specified

 
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