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My recent Prostatectomy and the journey so far...

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User
Posted 06 Jun 2022 at 11:37

Hi there, this is my first post on this forum:


My name is Nick and I was diagnosed in June 2020. At the time I was 62, fit and active. I live in Cardiff, Wales, UK


My PSA at the time was 11.4 (up from 8.6 - 3 months earlier), Gleason 3+3 in 1/10 cores, Stage T1c


We decided to go with active surveillance…


My PSA count continued to trend upwards and by October 2021 it was 21.6


I underwent a further MRI and although this showed no change I was referred for a second biopsy.


The biopsy revealed significant change: Gleason 3+4 in 5/10 cores, Stage T2b. 


I was referred for a bone scan and PSMA PET scan, both of which indicated that the cancer was still likely to be confined within the prostate.


At a consultation last month (May 10) it was agreed that I would need treatment and I decided that surgery would suit me best. I was immediately put on a waiting list for robotically-assisted laparoscopic prostatectomy. 


I was told that the wait would likely be 6-8 weeks. However, as I am retired and only live about 10 minutes from the University Hospital of Wales, I was available at very short notice and on May 23rd I took a phone call during which I was offered a slot on June 1st. I saw the surgeon the following day and spent most of that afternoon having various pre-operative assessments and briefings.


I attended the short-stay unit here in Cardiff on June 1st and had the operation that morning. I was discharged around 11am the next morning with two large bags full of paraphernalia and paperwork. The treatment at the hospital was first-class and all of the people I encountered there were wonderful.


My catheter removal and ‘trial without catheter’ (TWOC) is booked for Jun 14 and a subsequent consultation around 4 weeks later will give me an idea of how successful the treatment has been.


It’s clearly early days for me, recovery-wise, but my ‘journey’ is well along its way and I have several years of experience within the system so can offer advice and/or a point-of-view if needed.

User
Posted 06 Jun 2022 at 11:37

Hi there, this is my first post on this forum:


My name is Nick and I was diagnosed in June 2020. At the time I was 62, fit and active. I live in Cardiff, Wales, UK


My PSA at the time was 11.4 (up from 8.6 - 3 months earlier), Gleason 3+3 in 1/10 cores, Stage T1c


We decided to go with active surveillance…


My PSA count continued to trend upwards and by October 2021 it was 21.6


I underwent a further MRI and although this showed no change I was referred for a second biopsy.


The biopsy revealed significant change: Gleason 3+4 in 5/10 cores, Stage T2b. 


I was referred for a bone scan and PSMA PET scan, both of which indicated that the cancer was still likely to be confined within the prostate.


At a consultation last month (May 10) it was agreed that I would need treatment and I decided that surgery would suit me best. I was immediately put on a waiting list for robotically-assisted laparoscopic prostatectomy. 


I was told that the wait would likely be 6-8 weeks. However, as I am retired and only live about 10 minutes from the University Hospital of Wales, I was available at very short notice and on May 23rd I took a phone call during which I was offered a slot on June 1st. I saw the surgeon the following day and spent most of that afternoon having various pre-operative assessments and briefings.


I attended the short-stay unit here in Cardiff on June 1st and had the operation that morning. I was discharged around 11am the next morning with two large bags full of paraphernalia and paperwork. The treatment at the hospital was first-class and all of the people I encountered there were wonderful.


My catheter removal and ‘trial without catheter’ (TWOC) is booked for Jun 14 and a subsequent consultation around 4 weeks later will give me an idea of how successful the treatment has been.


It’s clearly early days for me, recovery-wise, but my ‘journey’ is well along its way and I have several years of experience within the system so can offer advice and/or a point-of-view if needed.

User
Posted 17 Jun 2022 at 20:52
My husband had his first orgasm the day the catheter out, with a bit of help from me. The sooner you learn how to reach orgasm without an erection, the better it will be for your peace of mind.

Gee oke, you should not ride a bike until you have discussed that with your surgeon. Some surgeons recommend that you do not get back on a bike until 6 months post-op to give the nerve bundles a reasonable chance of recovering. As our urologist said, "what's the point of me spending time & effort on nerve-sparing surgery if you are not going to give yourself the best chance of regaining erections?" Having said that, some surgeons feel that it doesn't make any difference and say it is okay to cycle when you feel ready, but you really need to have had that post-surgical review. If you are determined to cycle so soon, at least consider buying a prostate-friendly saddle.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jun 2022 at 13:17
My catheter came out on Tuesday, as scheduled.

They wanted to see the result of 3 pees, which I 'performed' in fairly quick order. Then I had a chat with the incontinence nurse and was sent home wearing a pad. The next milestone is a PSA test, then a chat with the consultant on July 19.

So far, everything is going fine. I've switched to 'Level 2' pads but only 'cos they're the lightest that were sent to me (free on the NHS here in Wales!). They're pretty small but I'm tempted to try something like the extra-light Tena Protective Shield as I'm only having the occasional leak when I forget to 'tighten-up' before leaning over. I'm weighing the pads after I've used them and they've only absorbed about 10-20ml. I'm bone-dry during the night but still wearing the pads, for now, just in case..

Being able to pee on demand (without having to think about things for up to 5 minutes!) for the first time in over 30 years is an absolute pleasure. It's like having a new toy.

Like you, I'm fairly fit and I have very good core strength. I started doing the recommended pelvic floor exercises a few months prior to the surgery but TBH I was already doing them without actually trying when I did my daily squats & crunches (I do at least 100 of each every morning).

I was back to brisk walking 5 days after the op and went for my first bike ride yesterday without any issues (aside from the usual car drivers!).

If I'm honest, the potential for ED was an issue for me when I was weighing-up my options but I'm pretty sanguine about it now. I live alone and only have the occasional sexual encounter and there are plenty of options other than penetrative sex. Living without a prostate that was likely to cause me an early, unpleasant end is preferable to being able to 'raise the flag'. The surgeon was able to preserve most of the nerves however, especially on the left, so I'm optimistic that things will improve.

On the plus side - dry orgasms have turned-out to be pretty bloody amazing!!

Good luck with everything Gee Oke.

User
Posted 21 Jun 2022 at 14:45
Sounds like all is going well for you guys. My husband is little further along, 13 weeks post op and apart from zero erections and a wound that has been very slow to heal, he hasn’t had any major issues. What I will say is don’t understand estimate the surgery - it’s major. Listen to you body and don’t push it too soon. Onwards and upwards.
User
Posted 17 Jul 2022 at 11:18

Correct!


 


I take Tadalafil


Sorry for the confusion.


Ivan

User
Posted 17 Jul 2022 at 13:53

I was prescribed 100 mg Viagra about 8 weeks post surgery (to be taken on demand rather regularly). The side effects were a bit grim. Yes, I certainly got rhe dizziness/light headed plus strange colours in my vision, headaches and a flushed face. On top of the it hardly had sufficient effect for penetration. The effects of Viagra just last a few hours so taking it before bed might help in your case. I discovered afterwards that at my stage of my recovery Viagra is not the right drug, its more of an event drug rather than aiding nerve repair. I've been pushing to get a Cialis prescription which is more slow acting and remains in the system longer. 5 mg daily Cialis is not approved in my NHS Trust. I can get 20 mg Cialis twice per week which is nearly the same if you split the tablets.

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User
Posted 17 Jun 2022 at 12:49

Hi, I was diagnosed end of January and finally has my surgery 4weeks ago. I am also pretty positive, however do have the odd worry about ED and incontinence. I am completely dry during the day and my diapers are wet overnight. I am fairly fit, love riding and weight training at the gym. I went back to the gym a week ago and yesterday started weight training just 10kg each. I have every reason to be hopefully and feel blessed at seeing each new day. I went back to work 10days after surgery and pretty much trying to get back to normal.


I lost my dear mother in Sept, was diagnosed with high bp and now prostate cancer. My gratitude however is that the Pca was caught early. I am waiting to have my first consultation in a few weeks time and hoping and praying it is all good news.

User
Posted 17 Jun 2022 at 13:17
My catheter came out on Tuesday, as scheduled.

They wanted to see the result of 3 pees, which I 'performed' in fairly quick order. Then I had a chat with the incontinence nurse and was sent home wearing a pad. The next milestone is a PSA test, then a chat with the consultant on July 19.

So far, everything is going fine. I've switched to 'Level 2' pads but only 'cos they're the lightest that were sent to me (free on the NHS here in Wales!). They're pretty small but I'm tempted to try something like the extra-light Tena Protective Shield as I'm only having the occasional leak when I forget to 'tighten-up' before leaning over. I'm weighing the pads after I've used them and they've only absorbed about 10-20ml. I'm bone-dry during the night but still wearing the pads, for now, just in case..

Being able to pee on demand (without having to think about things for up to 5 minutes!) for the first time in over 30 years is an absolute pleasure. It's like having a new toy.

Like you, I'm fairly fit and I have very good core strength. I started doing the recommended pelvic floor exercises a few months prior to the surgery but TBH I was already doing them without actually trying when I did my daily squats & crunches (I do at least 100 of each every morning).

I was back to brisk walking 5 days after the op and went for my first bike ride yesterday without any issues (aside from the usual car drivers!).

If I'm honest, the potential for ED was an issue for me when I was weighing-up my options but I'm pretty sanguine about it now. I live alone and only have the occasional sexual encounter and there are plenty of options other than penetrative sex. Living without a prostate that was likely to cause me an early, unpleasant end is preferable to being able to 'raise the flag'. The surgeon was able to preserve most of the nerves however, especially on the left, so I'm optimistic that things will improve.

On the plus side - dry orgasms have turned-out to be pretty bloody amazing!!

Good luck with everything Gee Oke.

User
Posted 17 Jun 2022 at 18:26

Wow! Orgasms already? You are not messing around.. Sadly it seems my little man is still feeling sorry for itself, wondering where the next hard-on is coming from! I think an erection is futherest from its mind at the moment. Sure it would come in time however. I did not know you could get on the saddle before 6weeks. I have been to the gym, but not gone near the weight, as I was pushing 120kg easily before my surgery. I might go for a little bike ride this weekend just to see how I feel.


Thanks a lot sir!

User
Posted 17 Jun 2022 at 20:52
My husband had his first orgasm the day the catheter out, with a bit of help from me. The sooner you learn how to reach orgasm without an erection, the better it will be for your peace of mind.

Gee oke, you should not ride a bike until you have discussed that with your surgeon. Some surgeons recommend that you do not get back on a bike until 6 months post-op to give the nerve bundles a reasonable chance of recovering. As our urologist said, "what's the point of me spending time & effort on nerve-sparing surgery if you are not going to give yourself the best chance of regaining erections?" Having said that, some surgeons feel that it doesn't make any difference and say it is okay to cycle when you feel ready, but you really need to have had that post-surgical review. If you are determined to cycle so soon, at least consider buying a prostate-friendly saddle.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Jun 2022 at 15:35

LynEyre, I think you are right about cycling too soon. I did 5miles on the gym bike today, I was completely smashed. I almost passed out, I think I under estimated how much the surgery took out of me. I was kinda OK on the weight doing shoulder Press. I think I will go easy until I have had my consultation in 10days time!


I am still unsure about dry orgasm without erction.. Just difficult to get my head around, particularly when as males we have been programmed to combine erection, ejaculation and orgasms as all connected.😄😄

Edited by member 18 Jun 2022 at 15:36  | Reason: Not specified

User
Posted 20 Jun 2022 at 12:53

I had a checklist from Guys of what I can and can’t do after surgery so cycling is definitely off for some weeks. Getting the catheter out tomorrow as long as the train strike doesn’t scupper my plans. Is it normal for it to hurt like hell when you’re trying do a number 2. I was told they won’t be sparing my nerves before the op so it’ll be interesting to see how things work out.

User
Posted 20 Jun 2022 at 13:29

I also had severe pains when doing a poo. It was really painful, I was in so much agony on a few times, apparently close to labour pains during child birth. I knew it was from inside my stomach, but not sure where. I spoke to my sister-inlaw in Holland and she said it was likely to be bladder spasms. I was prescribed a medication, only used it 3 times, I am good now, Thank God.

User
Posted 20 Jun 2022 at 14:36
Emptying your bowel involves a series of rhythmic muscle actions to move the tihs down to the rectum and out. Having RP means that a number of muscles are cut, burnt or moved about and it can take time for these to heal so even though the external wounds look small, all that muscle action internally is painful. I guess it is like going to the gym for the first time in ages and then not being able to lift your arms above waist height the next day!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Jun 2022 at 15:16

Originally Posted by: Online Community Member


Getting the catheter out tomorrow as long as the train strike doesn’t scupper my plans.



 


I have had around 12 trial without catheter and never failed. Mine never took longer than five hours, usually they have been around three hours. To speed things up I drink plenty of water before getting to the hospital, I find that if i am well hydrated before getting to the hospital the water they give me to drink at the TWOC passes through me far quicker. It is better to leak a bit than have a catheter put back in because you failed the TWOC. If it is going to be hot weather drink a bit more liquid. The removal is frequently described as weird, it should be pain free. If it gets stuck on the way out ask for a urologist to attend, my surgeon is convinced a swift removal after getting stuck caused all my stricture issues.


Make sure you have some pads, the hospital will normally give you some, but as a work colleague used to say better to be looking at some than looking for some. I took a towel and cover for the car seat in case of a "major" leak but it never happened. I also had a urine bottle in the car in case of an emergency. The towel is useful if stuck in a traffic jam with a coachload of people at the side of you😀. A spare pair of trousers and pants, again never needed. Elasticated waist trousers make it very easy to change the pad in a hurry. 


If you are going by train some of the above won't apply but I am sure you can adapt the advice 😃.


Hope all goes well.


Thanks Chris

User
Posted 21 Jun 2022 at 14:45
Sounds like all is going well for you guys. My husband is little further along, 13 weeks post op and apart from zero erections and a wound that has been very slow to heal, he hasn’t had any major issues. What I will say is don’t understand estimate the surgery - it’s major. Listen to you body and don’t push it too soon. Onwards and upwards.
User
Posted 16 Jul 2022 at 08:24
I was chatting to someone yesterday and they had been told by someone to take viagra everyday before surgery, I’ve not heard of this from my medical team?
User
Posted 16 Jul 2022 at 12:06
There is no evidence that taking viagra before or after RP makes any difference to erectile function recovery.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jul 2022 at 12:15

I wouldn't want to change drug regime just prior to surgery. Viagra is heart medication, it may be good or bad for you depending on the current state of health, but if you are currently fit for RP don't change things til after surgery.

Dave

User
Posted 17 Jul 2022 at 10:59
I've been taking 50mg Sildenafil daily since my catheter was removed almost 5 weeks ago. I wasn't given any specific advice about when to take it so have been doing so in the evenings when I eat.

I've increasingly been noticing quite severe postural hypotension, which I initially put down to the high levels of exercise I've been doing and the changed diet that I've recently embarked on but it dawned on me yesterday that the Viagra could well be responsible. My blood pressure is normally textbook 120/80 but lately it's been 100/60 and even lower.

My follow-up with the consultant is on Tuesday and I'll obviously raise this with him then but wonder if the collective here have any observations that might help me come-up with some questions for him beforehand.

Meanwhile, I'll take the tablet closer to bedtime and see if that helps...
User
Posted 17 Jul 2022 at 11:12

Are you sure you are taking 50 mg of Sildenafil a day? The tablets come in 5 mg capsules and I was only told to take one a day for nerve repair and up to 20 mg the day before I want sex.


 


Ivan

User
Posted 17 Jul 2022 at 11:15

You're probably thinking of the other stuff. Sildenafil (Viagra) comes in much higher doses than 5mg

User
Posted 17 Jul 2022 at 11:18

Correct!


 


I take Tadalafil


Sorry for the confusion.


Ivan

User
Posted 17 Jul 2022 at 13:53

I was prescribed 100 mg Viagra about 8 weeks post surgery (to be taken on demand rather regularly). The side effects were a bit grim. Yes, I certainly got rhe dizziness/light headed plus strange colours in my vision, headaches and a flushed face. On top of the it hardly had sufficient effect for penetration. The effects of Viagra just last a few hours so taking it before bed might help in your case. I discovered afterwards that at my stage of my recovery Viagra is not the right drug, its more of an event drug rather than aiding nerve repair. I've been pushing to get a Cialis prescription which is more slow acting and remains in the system longer. 5 mg daily Cialis is not approved in my NHS Trust. I can get 20 mg Cialis twice per week which is nearly the same if you split the tablets.

 
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