Prostrate Biopsy

User

Posted 05 Oct 2016 at 09:49

Hi
All the very best. Sounds like much more information provided re. DVD. I can not fault NHS, however in my opinion you have to ask a lot more. Yes, it is a major op. Consultant was talking about a day visit for me. ! Pushing it a bit. Da Vinci was an overnight stay. I assume you know 4 + 3 is potentially more serious than 3 + 4. Feel free to see my profile. Post op. analysis should give you a lot more information. You have been very fortunate and in good hands. May I ask did you find anything out about your surgeon or just 'went with the system' and was any nerve sparing undertaken.
I took a few weeks before I could tie my own shoe laces. I think this was more a result of swollen abdomen and digestive system more than sluggish. .. very little pain.

Again .. All the best.

Edited by member 05 Oct 2016 at 09:50 | Reason: Not specified

User

Posted 05 Oct 2016 at 11:39

Happy days for you then Happy!

Just remember that this was major surgery and your body needs to recover. Don't get too disheartened by small set backs which might happen.

Good luck with the catheter removal and after results.

Best Wishes

Sandra

*******

We can't control the winds - but we can adjust our sails

User

Posted 09 Oct 2016 at 08:27

Hi robgsr I did not know anything about the surgeon so just went with the flow. I go back to see him on the 5 November and I now have many questions to ask that I should have done previously but now i know what to ask. I will ask what the result of the biopsy of the removed prostate is and as you stated yes 4+3 is worse than 3+4 so I my have been luckier than I thought.
Now on my 5 day after release from hospital and 10 day after surgery and each day I feel stronger, I am able to get out albeit with my catheter and managed to do a little light stuff around the home, make a cu of tea etc.
The catheter is beginning to irritate as is the staples (which will be removed on Tuesday) but overall i seem to be recovering steadily. Can't wait to get rid of the catheter and have been practicing the pelvic exercises in the hope of no problems when it is removed.
There is a fair amount of swelling along the incision line and a lot of bruises all over my body, don't know how I managed to get so many and where they are but a small price to pay for my life.
I will update on my progress and have written down my experiences and have offered them to this website for publication for others that are going through this experience in the hope to help others fully understand what is going to happen to them.
Thanks again Sandra
The main learning point is to ask and ask and ask questions.
Thanks again all and best wishes for you full recovery

User

Posted 17 Oct 2016 at 17:52

Just an update I have now (17 October) finally had all my staples out and the catheter removed, but the incontinence is much worse than i ever imagined. I am now using pads which obviously help in allowing me to at least lead a normal life, but on this the first day am worried just how long this problem will be this severe. I am doing all the recommended exercises, but feel i need to pee all the time. But it is early days.
My nurse did not seem all that bothered and stated that after the full prostate removal and having the catheter for two weeks it would take a little while to get back to normal. Just hope she is right. But do not regret having the full removal

User

Posted 19 Oct 2016 at 07:56

It's now day three after the removal of my catheter and I seem to be getting some control back into my bladder movements. I am still leaking but only little dribbles, and i can urinate when I feel the need although the flow seems a bit week at times, however I do have the worry that occasionally there is blood at the start of my passing water, it's only a small amount and am not sure if this is just post operative so am looking for some advice.

There is also the residue of diluted blood on my pads occasionally too.

I would say that your diet after the removal of the catheter is also important, i have cut out all carbonated drinks and now do not take sugar in my tea (tastes horrible but I was really using too much artificial sweeteners). I have had the occasional glass of red wine, but not sure if this makes any difference. i drink lots of water.

But yesterday I drove my car for the first time and managed my first shower (yippee so relieved). Each day does seem to be better it's just this blood dribble that is a worry. Maybe i should go back to my doctors and seek advice.

User

Posted 19 Oct 2016 at 08:11

H

If in doubt always seek medical advice, we have Urology/ oncology nurses we can ring at our hospital and a dedicated Urology help line. I often got a small amount of blood either at the start or finish of urinating even after a month and sometimes the odd bit of debris. I did develop a water infection soon after my op, might be worth taking a water sample to the doctors.

Good news on the continence I was almost dry after four days and it looks like you are heading in the same direction.

Thanks Chris

Edited by member 19 Oct 2016 at 08:13 | Reason: Not specified

User

Posted 19 Oct 2016 at 08:25

Good advice but unfortunately I live in Spain so to get anything done I need to contact a translator first, but I will do that later today.
This is the frustrating bit not just when you don't live in the UK but getting advice without wasting the time of Doctors who are already too busy most days. I hate wasting their time just for a bit of advice, it's not like you can pick up the phone and just ring them for a chat.
Yes hoping I am following your lead. I am already looking at purchasing lighter pads for the day, although I noticed the pad was almost bone dry this morning, which is a result.
It's baby steps, take one day at a time, and realise small things that you are able to do are huge steps forward.
Thanks again

User

Posted 19 Oct 2016 at 14:25

Hi
Just read your reply. You seem to be doing very well. However get idea that you seem maybe like me . Doing tad too much. I have a wife to keep me in check. Lol
It was 4 weeks before I was allowed to drive .. by the missus. . This is a major op. Lots to heal. Great you are about. Please take it steady.
I had zero blood in urine. The urethra has been completely cut and obviously traumatised to say the least. Keep fluids flowing as you are doing. Water simply and best. I was told caffeine not ideal and juices irritate. The bladder needs to retrain. .! Obviously don't let urine become dark and concentrated. If your bowels are regular and you are having steady exercise and rest .. you are doing extremely well in my opinion. I did DIY. ie painting after couple weeks. I would occasional get leakage going up steps or suddenly get out chair . Car seat etc. I still do kegel exercises.

User

Posted 19 Oct 2016 at 15:34

Thanks robgsr it is really great when you get such positive responses on here and encouraging to hear from others who have gone through my experiences.
Yes my wife is trying to slow me down as much as possible, must say it was great to get out and walk around the supermarket today pushing the trolley, but she would not let me unload and bag everything and take it back to our car or unload into the car. Nor allowed to unload and unpack it all once home. Could really get used to this Lol
Thanks again

User

Posted 19 Oct 2016 at 20:13

Probably shouldn't be pushing a trolley even.

Men are at significantly increased risk of a hernia post-RP and it often seems linked to having done too much too soon. They have cut through multiple layers of fat and muscle, all of which needs to heal properly. Blood in the urine could simple be old clots as the urethra heals - but is often due to doing too much and putting a strain on the stitched urethra.

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

User

Posted 21 Oct 2016 at 06:31

I had a bad day yesterday, went to pass water very frequently, but the flow seemed week and had that feeling that I was dripping all the time, felt very uncomfortable and made me feel down as I seemed to have gone backwards in being able to control my bladder.

It's only four days since the catheter was removed and I know it is a long job but thought I would feel more in control. But other than that I feel better in myself but do get tired very quickly after just a short walk or having visitors.

Hope for a better day today.

User

Posted 21 Oct 2016 at 07:15

I went through a long period of feeling like I was dripping , when actually I wasn't. And was definitely peeing very frequently compared to now. It's early days , I'm sure things will keep improving

If life gives you lemons , then make lemonade

User

Posted 23 Oct 2016 at 06:57

It just seems like I have stopped progressing, even to the stage where I have more drops of blood in my urine at the start of passing water and especially during the night, where I can usually hold it for about three to four hours and when I go there is a few blood drops at the start of my urinating.

I suppose I am expecting progress to quickly but on some day it is hard to accept.

Yesterday (Saturday) I felt good and went for a walk, not to long, but i got tired very quickly, and came home but for the rest of the day the leakage was bad, so much so that I had to change my pad during the afternoon (not had to do that since the first day the catheter was removed), as the need to urinate was almost constant.

Although I can hold it in and try to do so, the dripping was totally uncontrollable,
and then during the night the amount of blood drips when passing water was much more than it has been so far.

This morning seems to be ok again.

Is there any information about post operative expectations? As I cannot seem to find any information about the drips of blood in my urine as to whether it is the normal healing process of the urethra healing, or something more serious that needs checking out?

User

Posted 23 Oct 2016 at 08:04

H

We all want to recover in a couple of days and being positive is good. You are only 19 days since a major op the blurb for open surgery is back at work in 4 to 6 weeks,i think that is being optimistic. Bear in mind the stats on regaining continence is something like at six months 70 per cent of men regain control and by 12 months 90 Per cent will have control, so you are doing very well,many guys say by mid afternoon the continence gets worse as they get tired.

We often say not to Google things but try "johns hopkins radical prostatectomy after care" it has some quite interesting info.

Thanks Chris

User

Posted 23 Oct 2016 at 08:06

Hi,

I had blood in my urine on a number of occassions in the first few weeks.

I was told that blood in the urine was normal and part of the healing process.

My own experience was that it happened either late at night.. before bed... or at my first wee in the morning.

Mine was more of a discolouration (pink colouring) at the beginning of the wee rather than definate drops.. but we are, of course, all different. I sometimes also had bits of 'debris' and again was advised by my consultant that this is normal during recovery.

Edit.. just read Chris' reply.. and he is right... it is early days!.. I was off work for 6 weeks and very glad I did so.

KRO...

Edited by member 23 Oct 2016 at 08:12 | Reason: Not specified

User

Posted 23 Oct 2016 at 09:01

Thanks Chris & KRO it is so helpful to have others who have experienced these procedures to be able to exchange information.

The John Hopkins link was really useful and it helps to understand that what i am going through is normal and nothing to worry about
It's so difficult over here in Spain to find any information, so using this site is so important to me.

Never having had any sort of surgery before everything is a new experience to me and I am the sort of person that needs to know as much as possible to be able to accept what is happening to my body

Thanks again for all your really helpful information.

regards
HappyH

User

Posted 23 Oct 2016 at 14:02

The theory behind incontinence being worse if you get tired is fairly straightforward. As part of the op, they removed the prostate with that section of urethra and one or both urinary valves that control continence. They also cut through the main muscles controlling the bladder sphincter. Then they joined the two cut ends of urethra back together, often needing to replace the valve and stitch it in place. Your brain then has to relearn how to control the sphincter and valve, much as you did as a toddler being toilet-trained - like a small child you have to concentrate to do that and if you get tired or start to concentrate on something else, the bladder control goes on the back burner (young children often get engrossed in playing something and then have accidents because they forget to hold on)

The small amounts of blood can be from where the two ends of the urethra have been cut and restitched, or from where the valve has been re-sited (if that was done). Clots are normal as the area heals but if there is more than a little blood it may be down to having pulled the join or from other damage and needs checking out.

When John had open RP he was told (and all the paperwork / information leaflets said) that he would need 12 weeks off work. in the event, he was working from home around 9 - 10 weeks post-op but his car insurer wouldn't clear him to drive until he had seen the surgeon at 12 weeks.

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

User

Posted 23 Oct 2016 at 14:31

Thanks Lyn very informative and helpful. Makes what is happening to me much more understanding. Lets hope I'm a quick learner.
really appreciated
regards
HappyH

User

Posted 25 Oct 2016 at 08:39

It's now exactly three weeks since coming out of hospital, almost four weeks since the Full RP, and one week since the catheter was removed.
I am still on the injections to avoid blood clots, beginning to get painful when I inject but only a few more days to go.
I am managing a short walk each day but by early evening I am very tired, can't believe how relatively fit I was before the operation so i find it difficult to take it easy but my wife is so strong for me, great teamwork.
I go to the toilet twice during the night, and the flow is good but still with a few dris of blood, but the pad is almost dry.
During the day I can control my urges but any sort of exercise just moving around the house and I can feel the odd drip, and by the evening these drips seem to get more frequent and the pad is usually full by the time I change it for a clean one before going to bed.
I am still changing the dressing (the scar is around five inches long) daily and the scar is looking nice and clean although there is still some swelling around the middle of the scar area, but no seepage and it looks ok. I don't seem to have much feeling around the scar but I suppose this is normal after cutting through so much muscle etc. Not sure how much longer I need to keep dressing this area but will have to go back to my doctor to ask the question, as over here there really isn't any aftercare unless you make the approach and ask questions. Having said that I have no issues with the medical staff I have been under during this whole process.
I feel good in myself and feel stronger each day so all in all I am progressing steadily if a little slowly for what I want but as everybody says on here, it's a huge operation and I have to accept that progress can be slow.
Wish all of you speedy recoveries.
regards
HappyH

User

Posted 09 Nov 2016 at 15:10

Back to the specialist today and thought all was going well, yes still got incontinence but I go through the night completely dry now, and just occasionally leakage during the day, depending how active I am.

But the specialist although happy with the operation seems to think they may still be some cancer in the spermatic chord or something like that, he wants me to have a blood test (booked for 23 November) and then back to him on the 28 November to see if I will require further treatment like chemo.

Am absolutely gutted and now really worried after going through the full RP with all that it entailed. Just hope the doctor is being over cautious.

But this has brought me back down to earth with a big bang.

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