RALP after TURP

User

Posted 18 Dec 2021 at 16:53

Progress report.
Saw the surgeon today for my 6 week post op review. Very positive outcome. He said that the margins were definitely clear and that all cancer had been removed. Definitely. The tumour was quite large but he was confident that I am cured. Yes. he actually used that terminology. I was so pleased that I dropped several of my pre-prepared questions. They just didn't seem important at the time.
My continence is nowhere near where I would I like it, although I don't think it is unusually poor at 6 weeks, but he said (after discussing my daily exercise regime) this is probably due to me overdoing things and I have been ordered to slow down. He said this is one of the drawbacks of robotic surgery in that the small exterior wounds heal quickly and give a false impression of what is really going on inside. Also, my previous TURP doesn't help continence because of the additional scarring. That said and if I take things slowly, do my PF sets daily, he is confident I will see significant improvement by the time I see him again in February, following my first post op PSA test. So, largely, with no adverse medical indications, it is up to me now.

Onward and upward.

Peter

User

Posted 18 Dec 2021 at 17:05

Great news, Peter 🍾🍻🎄

User

Posted 10 Jan 2022 at 12:34

So now I have just received a copy of my surgeon's letter to my GP.

My final pathology confirms Gleason 3+4=7 as expected, tumour volume of 2.19ml which Mr Google tells me is on the larger side of average, a staging of pT3a and clear margins.

I am surprised at the staging of pT3a (locally advanced) as I was advised pre-op that my cancer was contained within the prostate and whilst I welcome the confirmation of clear margins, I do not understand what that means if the cancer had broken through the capsule. Can anyone explain this to me?

Peter

User

Posted 10 Jan 2022 at 12:55

I had a similar "upgrade" from T2c to T3a and wasn't too chuffed with that. Nonetheless the "a" means it hadn't got to your seminal vesicles (that's a T3b) and like me, you still have the clear margins (very good news).

If you pop your figures into a nomogram like the Sloan Kettering Memorial Hospital one, toggle between T2c and T3a and it will give you an indication how it affects outcomes on a population basis (individually, who knows?). It will raise the possibility of re-occurence later on.

My surgeon also talked about "cure" but as someone who has worked in late pre-clinical and early clinical drug development for 35 years, I'm calling it remission.

Long may it last. 99.9% continence @ 6 months but 99.9% ED to go with it. 100 mg sildenafil or 20 mg tadalafil doesn't budge it one bit.

Cheers
Upkeep

User

Posted 10 Jan 2022 at 13:07

Thanks Upkeep. I'm still fighting the incontinence, but live in hope as it is still early days. Surgeon called it moderate stress incontinence. I'm OK at night, but 5 pads during the day with leakage at any time. Is that a fair description?

Edited by member 10 Jan 2022 at 14:29 | Reason: rephrase

User

Posted 10 Jan 2022 at 15:17

Originally Posted by: Online Community Member

So now I have just received a copy of my surgeon's letter to my GP.

My final pathology confirms Gleason 3+4=7 as expected, tumour volume of 2.19ml which Mr Google tells me is on the larger side of average, a staging of pT3a and clear margins.

Peter

A wonderful PCUK specialist nurse has just explained the margins to me. We are so fortunate to have this help available to us.

User

Posted 12 Jan 2022 at 10:55

Originally Posted by: Online Community Member

I'm OK at night, but 5 pads during the day with leakage at any time. Is that a fair description?

I was fortunate in that I hadn't had a TURP before diagnosis (almost 1 year now). Sometime about the 5-6 week post-op mark I suddenly passed a lot of old blood and clot debris in one go (somewhat unsettling). Most likely the sutures for the anastomosis (the re-joining of the urethra after the prostate is removed) had dissolved.
Immediately there was a big improvement in continence but it was probably 3 months before I was confident to go without any pads at all in the daytime.
I still do my PFE daily (but only 1 set each of 10 slow and10 fast squeezes).
I occasionaly experience "urgency" but that is more to do with my refusal to give up 2-3 cups of proper coffee at breakfast than anything else (rather oddly alcohol doesn't seem to hit me as much as coffee).

Cheers
Upkeep

User

Posted 12 Jan 2022 at 11:17

3 months no pads? That's real confidence. Well done. I look forward to it.

Peter

User

Posted 12 Jan 2022 at 12:44

Urgency might also be influenced by the stimulating caffiene. Might be worth trying a proper, de-caffienated coffee at breakfast. Once i made the switch i rarely go back. I guess a lot of it's in the mind.

User

Posted 22 Jan 2022 at 13:00

I've changed the title of this thread since I am no longer immediately after RALP. I am aware of complications that may be caused by the internal scarring from a previous TURP (2017) and also that such statistics that I can find indicate a slightly poorer (or later?) continence outcome may be expected for some men. I am now 11 weeks post op, virtually dry overnight, can collect urine in my bladder and hold it when sitting, not very good when standing or moving around. Using 4 Tena level 3 protectors during the day. I was hoping to be better at this stage. I should be interested to learn about the experience of any other members who have had RALP following TURP.

Peter

User

Posted 22 Jan 2022 at 13:55

If you are virtually dry at night and when stationary there is no mechanical damage (which is the slightly raised risk with previous TURP); your brain and pelvic floor just need a bit more time to learn how to communicate with each other again. Try not to be impatient.

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

User

Posted 21 Feb 2022 at 16:55

Just had my 3 month post op consultation. PSA was measured at 0.06 (undetectable). My continence is very slowly improving. Down to 3 pads during daytime and that is a mix of Tena level 3 and level 2, (down from 4 Tena level 3 pads at time of my last post) depending on what I am doing and where I am going. Surgeon explained that whilst I am not unusually late in attaining continence the bladder neck reconstruction, made necessary by my previous TURP, would almost certainly be slowing my recovery but there is no indication that anything is amiss. Have appointment to see physio tomorrow, just to make sure I am doing the pelvic floor exercises effectively. It was not easy to find a physio specialising in male post op pelvic floor.

Peter

User

Posted 03 Mar 2022 at 01:47

I'm now 6 weeks from surgery and have noticed small amounts of blood in my pee occasionally. Did you get advice that this is normal as the healing inside takes longer that the outside. If internal scabs are dislodged then I suppose there would be some blood in these small amounts.

I can now get by on two pads a day and it seems progress is not linear with some days better than others. I can retain urine whilst sitting or lying down at night but getting up from sitting down still involves leakage.

People I've talked to that have had the same op reckon it was 3 to 4 months before they could discard the pads.

User

Posted 03 Mar 2022 at 08:55

I didn't experience blood in urine but unless yours is bright red, it is likely scabs just falling away. I was advised that retaining urine comes in three stages. Lying down, sitting and eventually, whilst standing and moving around so it sounds like you are normal and doing quite well. The specialist pelvic health physio I saw last week and my surgeon with whom I consulted last week both advised that continence, for the average man, can take anytime between 3 months and 6 months plus and that, as I am making slow progress, I should not be concerned at this time. Of course, some are outside of these parameters.

User

Posted 03 Mar 2022 at 18:32

Thanks for that it's only been very small amounts of very light red blood on occasions so far so probably the internal scabs coming off. Still early for me six weeks in after the operation so hopefully by mid-summer things will be approaching normal again. I feel physically fit enough to resume all activities but in view of the slower healing of the internal bits maybe golf and cricket can wait another couple of months. My next consultation is in early April when I have my first PSA test after the op so will know more by then.

User

Posted 03 Mar 2022 at 18:38

I'm sure all will be fine.

Best wishes

Peter

User

Posted 23 Jun 2022 at 15:26

Update.

Now 7.5 months after RALP and I am, in normal circumstances I. e. not engaged in heavy physical activity, 100% continent. I may wear a thin pad (Tena level 1 or protective shield) on certain occasions away from home, but that is just for confidence as I have only been generally pad free for a week or so. And I need to use the stock! I am now living what I can call a normal life that 2 months ago, I truly thought was never for me. So, to all who are struggling physically and mentally in the early post op weeks, be patient and optimistic. And be sure that you are doing the PF exercises properly and effectively. See a pelvic health physio if you are unsure. I did and it really helped.

Peter

Edited by member 23 Jun 2022 at 18:34 | Reason: Not specified

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