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Radical prostatectomy advice

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User
Posted 19 Aug 2024 at 21:41

So I've just got back from my meeting with the consultant after my biopsy/scans. My Gleason is 4.3. He said it hasn't spread and there are 3 options. 1. Active surveillance, which he basically said isn't an option. 2. Radiation, but don't fancy the side effects or the length of treatment. 3. Radical prostatectomy, which I opted for on the spot. I'm an active 65 year old, play league tennis, don't want or can afford too much time off work. Would love to hear your experiences during/after this procedure. I am mentally strong and do not need the support they kindly offered. They said they could get me in within 2 months. Is it worth going private? My procedure would be in Hull (UK). Anyone have experiences there? Have I made the right choice? I made a snap decision as i always do. Don't want to regret it. Is leaky pee always an issue? Would appreciate your stories/advice/do's and dont's. Thanks for your time. I love this page/blog/whatever you call it. Oh, don't sugar-coat anything please. I am strong. 

User
Posted 20 Aug 2024 at 14:41

Hi 

My husband had RP for Gleeson 9 PC cancer mid June 

Couple of weeks discomfort and exhaustion and then he started to improve a lot. He uses 1 pad a day for an incase if sneeze cough etc but they did take left side nerve bundle so I think he’s doing very well considering. 

He wanted the chance to get it over and done with in one go despite knowing being G9 he may need RT in future 

He is pleased with his decision. 
good Luck 

M

User
Posted 22 Aug 2024 at 20:38

Hi Steve

The early MRI, biopsy and whatever else are not very accurate to identifying the cancer state. I adopted RP partly because I knew after surgery I will know exactly the extent of cancer involvement. I preferred to take the risk of RP side effect but did not like to walk in darkness for the remaining of my life.

I was diagnosed as 3+4=7 and T3a. After surgery I was found to be 3+4=7 and T2c with negative margin. However, one bundle of nerves removed. So ED is not as I wish but not too bothered. Continence was good from the beginning. 2.5 years passed RP, PSA is undetectable.

Good luck

 

 

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User
Posted 19 Aug 2024 at 22:01

Did they mention anything about nerve sparring/ likelihood of suffering permanent or partial ED. Did they say the position of the legion might make the chances of being incontinent following the op more likely. All considerations. You can change your mind btw. Worth discussing the options with the clinical nurse who has been assigned and or the nurses on here who are excellent.

 

 

User
Posted 19 Aug 2024 at 22:03

Before you commit, see the oncologist. My husband completely changed his mind and opted for radiation which was fine. You may still feel removal is right for you but get all the information before a decision. Our hospital wouldn’t let a decision be made without seeing both surgeon and oncologist.

 

 

User
Posted 19 Aug 2024 at 22:05

Hi Steve

I opted for RP as well, and had my surgery a month ago. It is not as bad as you build it up to be in your head.

I was diagnosed as 3+4=7, T2. After surgery I was found to be 3+4=7, T3a, as it had broken through the capsule.

I was concerned about all of the side effects, but just wanted the thing removed. It turned out I made the right call as it was growing quite quickly by the look of things. I also now have the backstop of RT/HT if it returns, which as T3a, I know there is a higher risk this may happen.

Continence is an issue, and there's no point pretending otherwise, but it is manageable, and I know it will get better. The issue with RT apparently, is that you can also suffer incontinence from your rear end, which I found a far more daunting prospect.

ED is clearly going to be an ongoing problem. Again, I consider this a relatively small price to pay for not having an aggressive cancer growing inside me any more.

The OP itself is nothing to worry about. I woke up to a bit of discomfort, but nothing that the pain relief they give you couldn't deal with. As for the catheter, it's an inconvenience, but nothing more to be honest. I was dreading it's removal, but in the event it took seconds and I didn't feel a thing.

Good luck mate, and keep us posted with your progress.

Ian.

User
Posted 19 Aug 2024 at 22:30

Steve I too am an active 65 yo. I had my RP at of May. I did go private as my data was a bit tight on the prostate being breached. The NHS said all contained and I would have wait till early autumn. My histology showed the NHS had underdiagnosed my status, so I'm very pleased I was able to take the big hit on our savings and get the work done privately, by a surgeon my wife and I wanted and trusted. 

The RP went smoothly. Only took paracetamol for 4 days. Catheter out in 7 days. Significant leakage when standing, but nothing lying. Slow improvement over many weeks, but step change around week 10. About 85% continent now. I do struggle with pads. Maybe my anatomy is the issue, as others seem fine.

Walking on day of op. Walked a mile the following day after op. Continued to walk a mile each day with catheter in. Progressed walks to fast pace (5 mph) around 6 weeks. Jogging from then on. Running at 10 weeks, albeit with disposable pants- perfectly OK, just a nuisance. 

Didn't even consider radiotherapy.

I may have to have clean up radiotherapy over the next few years as I was T3a after the prostate was tested, but this I felt was 20 or so days I could handle OK. I dread any hormone treatments and I felt surgery was the cleanest option. 

I was very careful with lifting and twisting for many weeks after op. I felt/understood walking OK, but any pulls on abdomen was strictly avoided, so careful planning in advance was essential. 

Good luck ...

 

User
Posted 19 Aug 2024 at 23:07

Originally Posted by: Online Community Member
 My procedure would be in Hull (UK). Anyone have experiences there?

Hi Steve.

I had robotic surgery at Castlehill Hospital in Hull, 18 months ago. I thought the hospital and staff were excellent.👍

Full details are on my profile.

Good luck mate.🤞

Edited by member 20 Aug 2024 at 07:33  | Reason: Additional text

User
Posted 20 Aug 2024 at 14:41

Hi 

My husband had RP for Gleeson 9 PC cancer mid June 

Couple of weeks discomfort and exhaustion and then he started to improve a lot. He uses 1 pad a day for an incase if sneeze cough etc but they did take left side nerve bundle so I think he’s doing very well considering. 

He wanted the chance to get it over and done with in one go despite knowing being G9 he may need RT in future 

He is pleased with his decision. 
good Luck 

M

User
Posted 20 Aug 2024 at 23:12
Margot just to clarify the nerve bundles referred to are unrelated to bladder control and only impact sexual function.

The reason prostatectomy can be a problem for bladder control is the damage done to the control sphincters by the surgery (one is completely removed).

Sounds like he is doing well as he is only a couple of months post op.

User
Posted 21 Aug 2024 at 09:11

Hi Franc 

The research I did suggests that having the nerves taken can affect continence this was also alluded to by the surgeon? 

He is however doing well with continence given the short time since surgery. 

M

User
Posted 22 Aug 2024 at 20:38

Hi Steve

The early MRI, biopsy and whatever else are not very accurate to identifying the cancer state. I adopted RP partly because I knew after surgery I will know exactly the extent of cancer involvement. I preferred to take the risk of RP side effect but did not like to walk in darkness for the remaining of my life.

I was diagnosed as 3+4=7 and T3a. After surgery I was found to be 3+4=7 and T2c with negative margin. However, one bundle of nerves removed. So ED is not as I wish but not too bothered. Continence was good from the beginning. 2.5 years passed RP, PSA is undetectable.

Good luck

 

 

 
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