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My Prostate Cancer Surgery experience

User
Posted 19 Sep 2018 at 16:00

Just over a week ago on September 11th I had Robotic Surgery at the Christie Hospital Manchester to remove my prostate. Everyone's experience will be different . I am 57 and apart from this problem am relatively healthy for my age. 


Making a treatment decision was not easy to say the least but after much debate and consideration I decided to have surgery. I was told  I was going to have a Robot assisted Laparoscopic Prostatectomy. The Da Vinci surgical system is a robotic platform and consists of a surgeon’s console where the surgeon sits and carries out the operation.


I had my Pre-op at the Christie Hospital on the Monday morning and was booked in the next day for Surgery and had to be there at 6.30am. I was given only a week from being given the date to the Op which looking back was a good thing.


Around 9.20 am after signing more forms and a pre-med I was wheeled down to the Christie Theatre where on route we crashed a few times into obstacles. At one point my dry sense of humour came out and I asked for L Plates on the wheelchair.


The operation must have taken around 4 hours and I spent some time in recovery and was taken back to greet my family around 3.30pm


The sensation of the Catheter did feel very weird and uncomfortable at first but after an hour or two it settled down and I did not feel in any pain. The mild discomfort only from the 5 incisions and the drain in my stomach


The staff at the Christie Hospital were just unbelievable. I cannot praise the Nurses, Physios, Doctors highly enough. I now understand why the Christie Hospital is World renowned


I spend two nights in hospital where I felt much stronger on the second day and ready to go home. I was shown how to use the Night bag which was not as difficult as I had thought and phone numbers to ring if I had any problems. By the second day my appetite was returning and I was helped to make the first tentative steps in the hospital corridor.


Today 7 days after my OP I returned to the Christie and my Catheter was removed. According to the Nurse my Consultant gets patients who are relatively young and with no other health problems to have it removed after a week rather than 10 days or longer


The removal of the Catheter was not as painful as I had anticipated and with a few deep breaths it was out within 10 seconds. I had a bit of leakage when I first passed urine but it got better and after 3 hours I had been six times and the nurse said the volume was enough that I could now go home


Having the Catheter removed felt liberating and my movements are now much more normal and I am hoping to get a more normal sleep tonight free of bags and Tubes but the 7 days with them were more manageable than I had expected.


One week on from Surgery I am feeling stronger and more confident and feel lucky to have been in the hands of a top surgeon, his team and the fantastic nurses at the Christie Hospital Manchester.


 


"Lots of people will tell you their experiences and treatment choices but do not listen to them as this will be your Journey and your individual choice." Macmillan Nurse to me after I had got my Diagnosis 


 


 


 


 


 

Edited by member 19 Sep 2018 at 18:42  | Reason: add comment from Macmillan Nurse

User
Posted 19 Sep 2018 at 17:34

Hi Gowerboy,


I have just joined this community and my experiences have been very similar to yours.


I has my prostate removed by Da Vinci last Monday in Medway, Kent.   I has no doubt it was the procedure I wanted to go through but I was fully counselled by both my surgeon and my oncologist on both surgery and radiotherapy.   I decided not to proceed with radiotherapy following the explanation I was given that radiotherapy would also involve a braccy procedure that required a stay in UCH London to have the nuclear seeds implanted via surgery but that if I went down this route I could not then go for surgery at a later date.   Having surgery does leave the radiotherapy options on the table if needed.   No brainer in my opinion.


I went to theater at 1pm, the anesthetist was really professional but with a manner that was really kind and assuring, he made me feel really at ease before putting me under.


Surgery took about 4 hours and woke up in recovery that evening feeling quite good and the drugs he gave me were still working really well.  They kept me there until the early hours in the night when the moved me to the ward and put me to bed.  Again the staff in recovery were 100%.


Urologist saw me at 8.30 Tuesday morning with a bunch of juniors and explained the procedure had gone very well but taken a little longer as they found an abscess on my bladder and this was not expected but the surgeon dealt with it at the time.   This meant they would keep me in another day to monitor my general well being.


Drains were working well but have to say the constipation was very uncomfortable and no laxatives were offered despite my requests.   the ward nurses said it would take a few days for the bowel movements to kick in again as they fill you with gas during the operation and this plus I guess some local trauma meant my sphincter decided it wasn't going to be working normally for a while.   Eating and drinking normally since Tuesday morning and otherwise just felt uncomfortable from the surgery (stitches etc) which I expected anyway.


Left hospital Wednesday afternoon and been home since with all the meds they give you inc laxatives.   No bowel movements until Friday afternoon but what a relief that was as I was worried when that would start.   Cannot emphasis enough how much better I felt after that and since.   Been pretty mobile since I left hospital but still struggling with sleeping and I have not been comfortable with the catheter/bags.   Still feeling quite sensitive with the tube and not really able to find a good position ether sitting or lying down so prefer standing/walking which is not s bad thing I guess.


Going to see the surgeon tomorrow (Thursday) and hopefully they will remove the catheter which I reckon will get me back to some normality.


Been very tired all the time but well supported by family and friends who have been fantastic despite my occasional grumpy moments when the tube discomfort just wears me down.


Here's hoping we both get the news we want in the near term once the analysis has been done on the prostate gland (mine was removed entirely due to the high Gleason score (5+4=9).   Scans previously showed the cancer was one sided (left), contained in the capsule and no detectable spread.   PSA was 5.3 originally and my surgeon started me on Bicaltumide 3 months ago which brough my PSA down to 2.8 and Bicaltumide stopped following surgery.


Please keep posting and I will too.


All the best.


Pauly


 


 


 


 


 

User
Posted 21 Sep 2018 at 14:11

Hi All,


My Da Vinci op was in early June. The post op week or so were uncomfortable but looking back now, I find it hard to believe or accept that I have been involved in a significant surgical op or that I have a life threatening condition. I can remember toothache which caused more upset ;-)


My own post op experiences are that I was/am not incontinent while lying or sitting down but that I leaked like a sieve when standing and moving. Three Tena no 3 pads a day to begin with - but down to just one now which can be nearly dry if I'm having a slack day  and just catches drips if I'm working actively but I'm still holding enough to need a pee at regular intervals. I might be up once or at most twice in the night when my bladder seems quite full.  All in all, I find the Tena pads extremely good and I have never thought that the incontinence would be life limiting in any way. Based on present progress, I expect to recover fully eventually.


I have found the erectile dysfunction a bigger blow  than I anticipated and I was finding the future prospects to be an unpleasant thought. I am blessed with a good partner and have found a way forward that gives each of us equal pleasure and benefits, which I confess has been a great relief. At the moment even with daily 5mg Cialis there is no sign of an erection returning.


Which brings me to the main point of learning in my personal PC journey. Although I have found that the sharp end of the NHS has been excellent, the admin and follow up is pretty poor.  When the Surgeon said 'catheter out in 7 days and I'll see you in 6 weeks', neither appointment appeared until I chased it up and then of course the appointment given is late. I'm not going to list everything that has happened but suffice to say that (based on my experience) you must 'take charge' of your treatment and make sure that the appointments that you need are made on time by chasing them up yourself. Answer phone messages are rarely answered and calls rarely returned.


Also, prior to my op I completely put myself in the hands of 'The NHS' and did as I was told, in fact I purposely stayed away from the web and google in terms of learning about Prostate Cancer and PC treatment. I think that my treatment has gone well but I also feel that I left myself vulnerable and would advise other to get to know as much about the ins and outs of diagnosis' & treatment. 


If I were to advise anyone else following I would advise getting to know as much as you can, -  which includes understanding that there are many variations and differences to the same diagnosis and treatment.


There, that turned into an epistle, - apologies - and I hope that your 'journey' is as positive and pleasant as it can be.


regards


stu k

User
Posted 19 Sep 2018 at 22:00
I had my RARP on 20th August and feel recovery has gone really well, catheter was removed on 29th and 3 weeks later I’m almost continent and just needing a light protector pad. I have to make regular toilet visits during night (at least 4 times) but was like that before surgery.
My psa was 9.1 and Gleason score of 7 (3+4) and contained with no spread to lymph nodes. So now waiting for follow up appointment date, which they said would be in 6-8 weeks.
Hope you all continue to heal well and we can beat this.
Show Most Thanked Posts
User
Posted 19 Sep 2018 at 17:14
Thanks Neil early days yet but so far so good

All the best too you too

Paul
User
Posted 19 Sep 2018 at 17:15
Excellent news about your progress - delighted to hear you're doing so well. There are quite a few Da Vinci robots around, by the way - certainly way more than two. Perhaps they meant two in Greater Manchester? I had a Da Vinci operation to remove my kidney on 1st September at Arrowe Park hospital on the Wirral, and most of the other men on the urology ward were there for prostate surgery.

Hope your recovery continues to be trouble-free.

All the best,

Chris
User
Posted 19 Sep 2018 at 17:18
Hi Chris,

Thanks very much for this and maybe they did mean two in Greater Manchester and I got confused
I hope you are recovering well following your Op on 1st September too

All the very best

Paul
User
Posted 19 Sep 2018 at 17:22
I'm recovering very well, thanks. Like you I finished up with five incisions - four small ones for the robotic instruments and one large one (about 4" long) that they took my kidney out through. All are healing well and I'm in no pain other than when my body reminds me that I'm overdoing it a bit!

Cheers,

Chris
User
Posted 19 Sep 2018 at 17:29
Good News Chris. Yes that is right I had five incisions the biggest near my belly button. It is remarkable what they can do as it is major surgery but using the Robot is less invasive and recovery time can be quicker. Yes that is probably a good sign that you want to push it but your body pulls you back :)

Take it easy

Paul
User
Posted 19 Sep 2018 at 17:34

Hi Gowerboy,


I have just joined this community and my experiences have been very similar to yours.


I has my prostate removed by Da Vinci last Monday in Medway, Kent.   I has no doubt it was the procedure I wanted to go through but I was fully counselled by both my surgeon and my oncologist on both surgery and radiotherapy.   I decided not to proceed with radiotherapy following the explanation I was given that radiotherapy would also involve a braccy procedure that required a stay in UCH London to have the nuclear seeds implanted via surgery but that if I went down this route I could not then go for surgery at a later date.   Having surgery does leave the radiotherapy options on the table if needed.   No brainer in my opinion.


I went to theater at 1pm, the anesthetist was really professional but with a manner that was really kind and assuring, he made me feel really at ease before putting me under.


Surgery took about 4 hours and woke up in recovery that evening feeling quite good and the drugs he gave me were still working really well.  They kept me there until the early hours in the night when the moved me to the ward and put me to bed.  Again the staff in recovery were 100%.


Urologist saw me at 8.30 Tuesday morning with a bunch of juniors and explained the procedure had gone very well but taken a little longer as they found an abscess on my bladder and this was not expected but the surgeon dealt with it at the time.   This meant they would keep me in another day to monitor my general well being.


Drains were working well but have to say the constipation was very uncomfortable and no laxatives were offered despite my requests.   the ward nurses said it would take a few days for the bowel movements to kick in again as they fill you with gas during the operation and this plus I guess some local trauma meant my sphincter decided it wasn't going to be working normally for a while.   Eating and drinking normally since Tuesday morning and otherwise just felt uncomfortable from the surgery (stitches etc) which I expected anyway.


Left hospital Wednesday afternoon and been home since with all the meds they give you inc laxatives.   No bowel movements until Friday afternoon but what a relief that was as I was worried when that would start.   Cannot emphasis enough how much better I felt after that and since.   Been pretty mobile since I left hospital but still struggling with sleeping and I have not been comfortable with the catheter/bags.   Still feeling quite sensitive with the tube and not really able to find a good position ether sitting or lying down so prefer standing/walking which is not s bad thing I guess.


Going to see the surgeon tomorrow (Thursday) and hopefully they will remove the catheter which I reckon will get me back to some normality.


Been very tired all the time but well supported by family and friends who have been fantastic despite my occasional grumpy moments when the tube discomfort just wears me down.


Here's hoping we both get the news we want in the near term once the analysis has been done on the prostate gland (mine was removed entirely due to the high Gleason score (5+4=9).   Scans previously showed the cancer was one sided (left), contained in the capsule and no detectable spread.   PSA was 5.3 originally and my surgeon started me on Bicaltumide 3 months ago which brough my PSA down to 2.8 and Bicaltumide stopped following surgery.


Please keep posting and I will too.


All the best.


Pauly


 


 


 


 


 

User
Posted 19 Sep 2018 at 17:37

Wow...I just read all those new posts which I hadn't seen while I was writing my post.


Fantastic to hear and see so many good comments.


Pauly

User
Posted 19 Sep 2018 at 17:43
Yes, constipation was by far the worst problem I had following my operation. The morphine and codeine painkillers locked me up completely, and despite copious laxatives I had no bowel movement for 8 days. A trip to A&E, an enema and what unimaginable relief!

Chris
User
Posted 19 Sep 2018 at 17:50

Hi Chris,


It wasn't something I thought would be so uncomfortable but like you say the relief is so good....


My neighbour is a GP and he brought me some zero % heineiken to make me feel human again and boy was he right.


All the best


Pauly

User
Posted 19 Sep 2018 at 17:57
Hi Pauly

Great to hear this news and thanks for sharing your story. I hope all goes well tomorrow and I am sure you will feel so much better after the Catheter is removed. I was not looking forward to it but it was very quick and within 5 seconds or so it was out and relatively pain less. I thought I would be gushing urine but I was fine and I stayed for 3 hours while I passed enough urine for the Nurses to be happy.I went half a dozen times and they said I could go home. I am wearing pads but so far largely have control. I am 57 and no incontinence problems previously so early days but so far so goog

I was lucky as I had a bowel movement 3 days after my OP but I can well believe your relief !!!

Yes the support of family and friends is invaluable and you really appreciate them at times like this. I must say the Nurses and staff at the Christie Hospital were unbelievable. To give them 5 stars is not enough and I know understand why the hospital is World renowned

My Gleason score was 3+4 on both sides and My PSA was 9 contained and localised .Your PSA was relatively low. I feel lucky as the only symptom I had was going to the toilet at night a bit more. It was the publicity from prostate Cancer UK and the publicity surrounding the actor Stephen Fry who talked about his Prostate Cancer at the beginning of the year that made me ask my GP for the PSA Blood test. If I had left it another few years the outcome may not have been quite so positive so I must thank him

All the best for tomorrow,I am sure you will feel a new man and let us know how you get on

Best wishes

Paul

User
Posted 19 Sep 2018 at 18:10

Hi Paul,


Thanks for your latest post.


Seems like we have alot in common here and with the guys too.


My PSA test was done for the first time because I was getting up in the night which I never had before and not sure my GP would have done it has I not told her about not being able to empty my bladder,   I like alot of other guys just put it down to getting older.   Thank god my GP listened and get me tested. Apparently having a low PSA is not always a good thing as some cancers just don't trigger the same kind of PSA reaction in different people so having a higher score is not really any worse in reality than having a low one.   I found that hard to understand as my logic was higher the score the greater the cancer but as with so many things in the cancer world it's all down to how our individual unwanted visitor has developed and how our body responds.


I agree with you that everyone I have met in the NHS has been fantastic and you don't feel like just another patient being treated but they really do care about you and doing whatever they can for you.  Amazing people.


I also know that I am starting a long journey now and this could be bumpy with unscheduled events/delays but thanks to the vast amount of information shared by my professionals and support especially from the McMillan nurses I am fully aware of what needs to done to stay as healthy as possible and stay in the game whatever this visitor might bring in the future.


All the best


Pauly


 


 

User
Posted 19 Sep 2018 at 18:15

Oh and yes cannot wait for the tube to come out!!!!!


How are you feeling overall and what did your surgeon tell you post op?


I guess we both have a period of waiting for biopsy results?


Pauly

User
Posted 19 Sep 2018 at 18:17
HI Pauly

Yes the PSA Test is a strange one and can be unreliable and give false positives etc which is why Some GP'S are a bit wary about the test. I am glad your GP like mine listened and you got tested.

It is good that we are all on a journey where we can get lots of support from the McMillan nurses, family, friends and people on this site

I look forward to hearing about the succesfull removal of your Catheter !!

All the best

Paul
User
Posted 19 Sep 2018 at 18:21

Hi Pauly


 


Overall so far I feel okay no big fatigue but just a little tired at times and I feel much stronger than I expected.


I have to wear these lovely white stockings for a month and Have a blood thinning injection to take once a day for a month and then back to see the Surgeon in around 4 weeks time for Biopsy result . What about you ?

User
Posted 19 Sep 2018 at 18:33
I only had to give myself the injections for 14 days into my stomach muscles, but each place I injected myself developed into a huge black bruise. Has that been the case for you, too? I was very glad to reach the end of them last week, but now I'm black, green, yellow and purple over the whole of my lower abdomen!

Chris
User
Posted 19 Sep 2018 at 18:34

Hi Paul,


I had the white stockings on until today as they were getting really tight, no idea why but I will ask the staff at hospital if I need another pair or not.  Most guidance I have read suggests they are needed where people are not as mobile as they would like so hopefully they will tell me to forget them but I will post what they say.


The daily injections....hmm loverly (not).    Doesn't really hurt but I must have messed up yesterday as I got my first bruising showing I think I was a bit quick and didn't pinch an inch as I was told to so I may get told off for that one.


Don't know if they will remover the stiches (5 wound sites) or if I have to go to the GP for that?


I think if I was sleeping ok I wouldn't be anywhere near as tired as I am but I did manage a little shopping trip today round the supermarket (never noticed how cold those places are before...Brrrrrr..will wear a jacket next time.


Glad to be off the Bicaltumide tablets,hopefully my nipples will feel normal again as they were sore to touch.


Cheers


Pauly


 

User
Posted 19 Sep 2018 at 18:45

Hi Chris 


That goes to show how different we all are then!! Sorry ti hear this but so far I have been lucky with no bruises or reaction at all . Sounds like you are almost allergic to them .I hope it clears up soon for you


 


Paul 

User
Posted 19 Sep 2018 at 18:45

Hi Chris,


Feeling it too....human pin cushions, they gave me enough for another 18 shots from tomorrow....oh well is what it is.


All the best


 


Pauly

User
Posted 19 Sep 2018 at 18:48

Hi Paul,


I thought I was doing fine as well, no bruising until today.


Like I said keep on with the pinch an inch method every time and try to avoid the same place twice every time you jab I am sure that helps avoid bruising?


All the best


Pauly

User
Posted 19 Sep 2018 at 18:59
Thanks! Now I've finished the course of injections the bruising's fading, but each one goes through a spectacular range of colours as it does so, and given that they're all obviously different "ages" it'll take a while to fade completely, I suspect. Doesn't really hurt - just a little bit sore. As you say, though, different people react differently. I've always come out in bruises from injections.

Cheers,

Chris
User
Posted 19 Sep 2018 at 19:17

Great to hear things have gone well for you Gowerboy and Pauly.


wishing you all the best,


Ian

User
Posted 19 Sep 2018 at 20:40

Hi Pauly


re the white stockings Maybe get the size checked then. I have a size large on one leg and an Extra large on another due to a bit of swelling I have had on one knee for some time and they feel fine. Yes if you pinch an inch and do the injection there you should hopefully be ok


My bandages came off after a few days and told no stitches so should heal naturally .I was told they were glued 


Yes lack of sleep is a bugbear but hopefully in time we will sleep better but I guess a minor irritation in the scheme of things


I went out today and caught in the wind and rain and felt it more than normal


Cheers


 


Paul 


 


 

User
Posted 19 Sep 2018 at 20:43

Hi Ian


Thanks for this and I hope you are doing ok 


Best Wishes


 


Paul 

User
Posted 19 Sep 2018 at 22:00
I had my RARP on 20th August and feel recovery has gone really well, catheter was removed on 29th and 3 weeks later I’m almost continent and just needing a light protector pad. I have to make regular toilet visits during night (at least 4 times) but was like that before surgery.
My psa was 9.1 and Gleason score of 7 (3+4) and contained with no spread to lymph nodes. So now waiting for follow up appointment date, which they said would be in 6-8 weeks.
Hope you all continue to heal well and we can beat this.
User
Posted 19 Sep 2018 at 22:36
HI RWM

Thanks for this and your PSA and Gleason score was the same as mine. I am glad to hear your recovery is going well and side effects are quite minimal.

Hope you continue this progress and all goes well at your follow up appointment and you go from strength to strength

Best Wishes

Paul
User
Posted 20 Sep 2018 at 08:33

Hi Ian,


Thanks for the good wishes, just read your story....looks like you have had it hard with all the ongoing treatments, no wonder you say you are so tired from it all and I think you have done amazingly well keeping it all together and your test results show you have had good results to date and long may that continue.   


I hope you are able to enjoy a long and rewarding retirement


All the best


Pauly

User
Posted 20 Sep 2018 at 14:13

Glad its all going well 

User
Posted 20 Sep 2018 at 14:41

Hi Guys,


Just back from the hospital and yes the catheter has been successfully removed without any issues.


Minor leakage so far and changed one pad.    Pelvic floor muscle seems to be doing its thing quite naturally which is a very pleasant bonus.


Pauly

User
Posted 20 Sep 2018 at 15:43
Great news, Pauly. I wish you a successful recovery.

Chris
User
Posted 20 Sep 2018 at 18:23

Gowerboy - diolch yn fawr - your experience has certainly improved my outlook, and surgery does not seem such a radical option.


Hwyl


Nick

User
Posted 20 Sep 2018 at 19:23

Hi Guys,


I have been a bit busy today following by hospital visit earlier so can now update you with what else happened today.


Nurses also removed my metal clips from the 5 wound sites.   Now feeling rather sore there but I know it will all pass fairly quickly from here so that's good too.


Been to the loo a few times now and control seems pretty good so far with being able to sense when I need to go and then holding until I get to the loo.   Sitting down rather than standing still seems the best way for me.   Pelvic floor is working and I am able to control flow to some degree (not quite able to piss like a racehorse yet but hopeful that won't be too long now).


Having that catheter out was just a few seconds, no pain just mild discomfort but feeling so much better now and looking forward to a good night's kip which has been a long time coming.....


All the best to you


Pauly

User
Posted 20 Sep 2018 at 19:34
I think you’ll find that having the surgical staples removed will make you an awful lot more comfortable (once the staple holes have closed up, which takes about 24h). They were my main source of pain once I got home from hospital. Because my surgery was abdominal, the staples pulled every time I moved, which hurt like hell. Perhaps though with an RP op the wounds don’t move as much when you walk?

It’s amazing how quickly the appearance of the wounds will improve without the staples. I only had staples in my long incision (the others were sutured). When the staples were removed it looked horrible - angry red and puckered up like a mountain range! - but now 10 days later it’s just a thin pink line with a row of pink dots on each side where the staple holes were.

Chris
User
Posted 20 Sep 2018 at 20:45

Hi Chris,


Thanks for posting.   Feeling a bit like I did after the biopsy procedure now, rather sore and sensitive down there if you know what I mean and very similar sensations right now so not feeling like I will sleep too well tonight but still much better without that rubber tubing and bag etc etc. 


Again nurses were really good and reassuring even though I was pretty grumpy earlier without much sleep lately.   Really need to get back into decent sleeps next...


Consultant also got the results of my prostate and margins tests post surgery.....got to be honest and say if what he told and showed me is right (and I have no reason not to believe it) then it looks like they got it just in time.   2nd biopsy confirmed I had 5+4 = 9 Gleason grade/score in the left side of the prostate.  


Consultant told me that tumor was completely contained within the capsule and no signs of any extensions or break out.   The other very positive update was that the margins were all clear with 0 (zero) scores.   Having had the whole prostate taken out he seemed very happy with the lab test results.


Best news I could have wished for and not ashamed to say I cried like a baby when he told me and shook his hand and just couldn't let go...the man did a fantastic job and achieved an amazing outcome.


Back in November for the first follow up tests to see what they find.


All the best


Pauly

User
Posted 20 Sep 2018 at 21:12
That’s wonderful news about the lab results - I’m delighted to hear it!

All the best for your continuing recovery,

Chris
User
Posted 20 Sep 2018 at 22:08

Hi Pauly


Excellent news that the Catheter has been removed and all went well


 


Yes it seems doing the Pelvic floor exercises does work


 


I hope you go from strength to strength 


 


Best Wishes


 


Paul 

User
Posted 20 Sep 2018 at 22:13

Hi Nick


diolch yn fawr  to you too


I was also worried before hand about surgery which is probably natural


As a Macmillan Nurse said we will all have our own individual journeys and none will be identical


I must admit after a while when I had eventually made a decision I decided to stay away from forums as I found the conflicting experiences a bit confusing and once I made the decision I thought it was best to stick to it and not let anything give me doubts


 


let us know how you get on Nick and if I can give you any other info let me know


 


Best Wishes


 


Paul 

User
Posted 20 Sep 2018 at 22:19

Hi Pauly


Fantastic News and I am not surprised you were so emotional as it must have been such a relief


So pleased for you and hope your recovery is a good one


Keep in touch


 


Paul 

User
Posted 21 Sep 2018 at 08:32

Hi Paul & Chris,


Many thanks for the posts last night,much appreciated.


I am still getting my head round the lab results and there is a nagging doubt in my head that I could be possibly be clear after being diagnosed as Gleason 9 with T2 and relatively low PSA.   I feel very fortunate indeed right now and the relief is like nothing I have felt before. 


Now to get on with recovery I guess, another poor night's sleep but hoping tonight will be much much better.


No night time incontinence but I did go to the loo almost hourly so not a surprise really.   A few dribbles this morning after 1st daylight pee (still sitting down as it just feels right for me).


Time for some peppermint tea and breakfast, nice sunny day here which always helps so may try a bit of potting new plants for the season,nice to be able to think of getting on with what seemed such a trivial thing only a few days ago.


All the best


Pauly


 


 

User
Posted 21 Sep 2018 at 09:17
Hi Pauly,

They were pretty quick with your post-operative biopsy results - I had to wait six weeks for mine and according to the histology report, the samples were not even looked at for four weeks! They blame it on a shortage of pathologists at my particular hospital.

It seems you have been very lucky with such an aggressive cancer, G9, and the fact that it has been completely removed with no spread is very good news indeed. Good job it was caught in time.

Best of luck with your recovery.

Cheers, John
User
Posted 21 Sep 2018 at 09:32

Hi John,


Yes I feel really fortunate today with that outcome which I did not expect.   I still have that "what if" going on round my head as I know the cells could have already moved around my body in the bloodstream and could be quietly biding their time elsewhere.   Common belief though is that if it is going to travel it will first stop off locally in the margins around the prostate and local nymph nodes right now things are looking good.   The ongoing monitoring of the PSA will no doubt guide me going forwards and I know this could go on for @ 5 years yet but so far I could not have hoped for more having been through all the emotional upheaval since being diagnosed in April/May this year.   You know what I mean, that time you look at someone you really care for and think to yourself "how long and what to do next"....


Here's to moving on and getting on with living.


All the best


Pauly

User
Posted 21 Sep 2018 at 10:09

If you can be bothered to fill them in, there are Nomograms which attempt to forecast the percentage risk of recurrence and morbidity of over a period of years, but bear in mind that if it is a ten-year forecast, the data is from ten years ago and this kind of medicine has gone on in leaps and bounds since then.


So we might have died of a heart attack or car crash before any recurrence. As you say, move on and up!


This is the Nomogram my oncologist used:


https://www.mskcc.org/nomograms/prostate/post_op

Edited by member 21 Sep 2018 at 10:13  | Reason: Not specified

User
Posted 21 Sep 2018 at 10:45

Hi John,


That's a very interesting prediction tool, I think I saw that or something like it when I met the radiotherapist when I had to choose my preferred treatment plan.   Did wonder where that came from so thanks for sharing it.   As you say, it is a simple predictor and over time other factors come into play that can affect survival rates long term.   One of those things that is interesting to try out at least.


All the best


Pauly

User
Posted 21 Sep 2018 at 11:24
Pauly, prostate cancer doesn't spread through the blood - it spreads though the lymph system. Think how much trouble we'd all be in after a biopsy if it did spread through the blood!

Cheers,

Chris
User
Posted 21 Sep 2018 at 12:28

HI Pauly


You have got your your post-operative biopsy results  back quickly as Bollinge says. I will not get mine until Mid October which will be 4 weeks after he op but good that you have and fantastic news that they are so positive for you. You must be so relieved 


Last night I went to the toilet around every two hours which was better than the night before so hoping it gets better as time goes on. During the day leakage is usually down to coughing or getting up from a chair. Will try and increase my working as I get stronger.


I am staying away from tea during the day as finding it is making me want to go to the toilet more often and reducing my fluid intake 2 hours before bed


Enjoy your peppermint tea and Breakfast 


PS . I would like to thank everyone who has made contributions to this thread they are very much appreciated and I wish you all the best 


Best wishes


 


Paul 


 


 

User
Posted 21 Sep 2018 at 12:57

Hi Chris,


My bad there....thanks for clarifying re blood etc as I would not want to mislead anyone so do appreciate your update.


Hi Paul,


I did not expect them back so soon either was thinking it would be 4-6 weeks not 10 days, maybe it was fast tracked as I had a high grade tumor at  Gleason 9?


Just keeping my fingers and toes crossed now for you guys and the kind of news you want to hear going forwards.


All the best


Pauly

User
Posted 21 Sep 2018 at 14:11

Hi All,


My Da Vinci op was in early June. The post op week or so were uncomfortable but looking back now, I find it hard to believe or accept that I have been involved in a significant surgical op or that I have a life threatening condition. I can remember toothache which caused more upset ;-)


My own post op experiences are that I was/am not incontinent while lying or sitting down but that I leaked like a sieve when standing and moving. Three Tena no 3 pads a day to begin with - but down to just one now which can be nearly dry if I'm having a slack day  and just catches drips if I'm working actively but I'm still holding enough to need a pee at regular intervals. I might be up once or at most twice in the night when my bladder seems quite full.  All in all, I find the Tena pads extremely good and I have never thought that the incontinence would be life limiting in any way. Based on present progress, I expect to recover fully eventually.


I have found the erectile dysfunction a bigger blow  than I anticipated and I was finding the future prospects to be an unpleasant thought. I am blessed with a good partner and have found a way forward that gives each of us equal pleasure and benefits, which I confess has been a great relief. At the moment even with daily 5mg Cialis there is no sign of an erection returning.


Which brings me to the main point of learning in my personal PC journey. Although I have found that the sharp end of the NHS has been excellent, the admin and follow up is pretty poor.  When the Surgeon said 'catheter out in 7 days and I'll see you in 6 weeks', neither appointment appeared until I chased it up and then of course the appointment given is late. I'm not going to list everything that has happened but suffice to say that (based on my experience) you must 'take charge' of your treatment and make sure that the appointments that you need are made on time by chasing them up yourself. Answer phone messages are rarely answered and calls rarely returned.


Also, prior to my op I completely put myself in the hands of 'The NHS' and did as I was told, in fact I purposely stayed away from the web and google in terms of learning about Prostate Cancer and PC treatment. I think that my treatment has gone well but I also feel that I left myself vulnerable and would advise other to get to know as much about the ins and outs of diagnosis' & treatment. 


If I were to advise anyone else following I would advise getting to know as much as you can, -  which includes understanding that there are many variations and differences to the same diagnosis and treatment.


There, that turned into an epistle, - apologies - and I hope that your 'journey' is as positive and pleasant as it can be.


regards


stu k

User
Posted 21 Sep 2018 at 16:14
Hi Stu,

Thanks for sharing your experience and good to hear it has largely been a positive one apart from the admin side which is unfortunate and not something anyone needs at such a stressful time

I agree the Tena pads/ Underwear are very good and they give me a lot more confidence going out. I had a trip to a garden centre with my wife today as it is too wet outside to walk and felt fine

I hope your "Journey" carries on in this positive way and the admin and follow ups improve for you

Let us know how it goes

Best Wishes

Paul
User
Posted 21 Sep 2018 at 23:14

Hi Paul,


Here's wishing you a speedy recovery.


I had my RP in June last year - the operation went well and I recovered quite quickly. The main problem I had was the catheter, I had a small leak in the bladder neck which meant I had the catheter in for 9 weeks. Not a pleasant experience. I had 4 cystograms until eventually the leak had healed and the damn thing was removed. 


Generally my care was very good but staff are so much overworked. One night I was nearly given insulin (I'm not diabetic), it was only when the nurse got the needle out and said your sugar levels were fine this morning when I replied but I don't have sugar ! Same name different person. 


On another occasion after a cystogram I was on my way home and developed a sudden urge to go to the loo. I was busting and developed so much pain in my stomach. Not understanding why the catheter bag wasn't filling I was horrified to discover that one of the xray team had left a clamp on my catheter tube so couldn't pass water. The relief at releasing that clamp, needless to say when I told the specialist he wasn't too impressed and 'he would be having words'.


After catheter was removed I was dry within 3 weeks and very rarely now when I just lift something heavy I may get a twinge drip.


These were just a couple of minor blips and realise I'm one of the lucky ones.


Best Wishes


Rich


 


 

User
Posted 22 Sep 2018 at 06:20
Morning gents,

Another night going on the hour every hour just feels like egg cupful each time which is frustrating but hardly worth worrying over in the grand scheme of things..

Back to bed for another short kip.
 
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