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Da vinci surgery - my experience

User
Posted 16 Jun 2014 at 13:59

I have previously posted on another thread but thought that I would put together my thoughts on my diagnosis and treatment partly for cathartic reasons and to keep me focused and partly in the hope that it may be of help and interest to others. This is in return for all the helpful advice I have gleaned from reading the experiences of other posters, for which I am most grateful.

 

I had been concerned for a few weeks about a weaker urine stream but did not do anything about it until my wife said she had noticed me spending longer in the loo and urged me to go to the doctor. Thank goodness for the wise woman. My doctor ordered tests which came back with a PSA of 7.5. He then did a DRE and found there was something irregular on the prostate and referred me to the hospital.

 

On the first appointment the urologist examined me and confirmed that the prostate was lumpy. He therefore ordered a biopsy. He said it might or might not be cancer and if it was cancer they might or might not decide to treat it.

 

The biopsy was not a difficult experience. It was a little uncomfortable but certainly not painful. In fact, whilst the doctor was getting on with the biopsy I was sharing jokes with the nurse. When the results came back I was a little shocked. I had convinced myself that it was just an enlarged prostate but the results showed a Gleason of 3+4=7, 2 cores positive, 7mm and 3mm from the right base, 1 core positive, Gleason score 3+3= 6, 1mm right peripheral zone. I was told that it was probably T2a but there was a 5% chance it was T3. I was booked in for an MRI scan.

 

Then came my appointment with the oncologist. Her report noted that the MRI scan had shown high grade disease in the right peripheral zone with possible early T3a disease. She did stress that the scan was not totally conclusive that the cancer had broken out of the prostate. She added that a 9.5mm left external iliac lymph node was seen and that I should be staged as T3a N0M0. (Each stage of the diagnosis has seemed a little worse than the previous stage).

 

She spent quite a lot of time with me. She said that at their MDM they had concluded that radical treatment was best for me and that brachytherapy was not suitable due to the possibility of T3a. She went through what IMRT radiotherapy would involve. When I asked her bluntly what she considered would be the best option for me she was quite clear that it would be surgery.

 

I had my appointment with the surgeon on 29th May. There was little he could add to what the oncologist had said about the prognosis, though he did say that he felt that, as the 9mm or 9.5mm lymph node was on the opposite side to the cancerous side of the prostate, was under 1cm (pretty close though) and with a PSA of 7.5, there was a very good chance that it was simply an enlarged lymph node. We discussed the Da Vinci surgery and the possible side effects. He told me he has done 700 of these operations. I had already decided to go ahead with the surgery so we were able to book a date there and then. It is booked in for Friday 20th June.

 

I have since had the pre-op medical and all seems to be well.

 

So, I am now preparing myself for the operation. I have no real worries about the operation itself but I am not looking forward to the after effects – just hoping that I will be one of the 30% (according to the surgeon’s own statistics) who regain continence within a few days. The other big worry is about the pathology results on the removed prostate and lymph node.

 

So far I have been very happy with the NHS. Everyone I have seen has been very helpful and patient and I feel well-looked after.

User
Posted 16 Dec 2014 at 14:33

Well, that's squeaky bum time over for the time being.  I had my third follow up visit today, 6 months now after the op.  I am pleased to report that PSA is still undetectable.  What a relief.  Next appointment on 7th April but Christmas and our sunshine break to the Caribbean at the beginning of January can now be fully enjoyed.

User
Posted 11 Apr 2015 at 22:46

A quick update from me & a fingers-crossed for those who have their PSAs in April. Saw my head honcho urology consultant in Jan -- the chap who'd actually performed the robotic op -- & decided 4 days before the consultation, in an excess of possibly unwise bravado, to bite the bullet & dispense with the single Tena pad I'd been wearing until then. Good news. PSA still undetectable, & consultant sufficiently confident to move my case to six-monthly PSA reviews, after which I'd only be summoned to the clinic if there was any concern. He also wrote to my GP recommending the fairly standard 5 mg per day tadalafil (Cialis), which I've now been taking for 2 months, but asked me to report back if there was any reduction in continence after taking the drug, since one of his patients had noticed a slight deterioration. So far so good -- just the very rare & almost-imperceptible leak, & progress on the ED is encouraging, although it was proceeding pretty well before the Cialis,so I'm not sure how much difference that's made...

10 months on & some sort of normality beckons,

Best Wishes to Roddy, Chris, Steve, Luther & Bri,

Morris http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

User
Posted 16 Jun 2014 at 13:59

I have previously posted on another thread but thought that I would put together my thoughts on my diagnosis and treatment partly for cathartic reasons and to keep me focused and partly in the hope that it may be of help and interest to others. This is in return for all the helpful advice I have gleaned from reading the experiences of other posters, for which I am most grateful.

 

I had been concerned for a few weeks about a weaker urine stream but did not do anything about it until my wife said she had noticed me spending longer in the loo and urged me to go to the doctor. Thank goodness for the wise woman. My doctor ordered tests which came back with a PSA of 7.5. He then did a DRE and found there was something irregular on the prostate and referred me to the hospital.

 

On the first appointment the urologist examined me and confirmed that the prostate was lumpy. He therefore ordered a biopsy. He said it might or might not be cancer and if it was cancer they might or might not decide to treat it.

 

The biopsy was not a difficult experience. It was a little uncomfortable but certainly not painful. In fact, whilst the doctor was getting on with the biopsy I was sharing jokes with the nurse. When the results came back I was a little shocked. I had convinced myself that it was just an enlarged prostate but the results showed a Gleason of 3+4=7, 2 cores positive, 7mm and 3mm from the right base, 1 core positive, Gleason score 3+3= 6, 1mm right peripheral zone. I was told that it was probably T2a but there was a 5% chance it was T3. I was booked in for an MRI scan.

 

Then came my appointment with the oncologist. Her report noted that the MRI scan had shown high grade disease in the right peripheral zone with possible early T3a disease. She did stress that the scan was not totally conclusive that the cancer had broken out of the prostate. She added that a 9.5mm left external iliac lymph node was seen and that I should be staged as T3a N0M0. (Each stage of the diagnosis has seemed a little worse than the previous stage).

 

She spent quite a lot of time with me. She said that at their MDM they had concluded that radical treatment was best for me and that brachytherapy was not suitable due to the possibility of T3a. She went through what IMRT radiotherapy would involve. When I asked her bluntly what she considered would be the best option for me she was quite clear that it would be surgery.

 

I had my appointment with the surgeon on 29th May. There was little he could add to what the oncologist had said about the prognosis, though he did say that he felt that, as the 9mm or 9.5mm lymph node was on the opposite side to the cancerous side of the prostate, was under 1cm (pretty close though) and with a PSA of 7.5, there was a very good chance that it was simply an enlarged lymph node. We discussed the Da Vinci surgery and the possible side effects. He told me he has done 700 of these operations. I had already decided to go ahead with the surgery so we were able to book a date there and then. It is booked in for Friday 20th June.

 

I have since had the pre-op medical and all seems to be well.

 

So, I am now preparing myself for the operation. I have no real worries about the operation itself but I am not looking forward to the after effects – just hoping that I will be one of the 30% (according to the surgeon’s own statistics) who regain continence within a few days. The other big worry is about the pathology results on the removed prostate and lymph node.

 

So far I have been very happy with the NHS. Everyone I have seen has been very helpful and patient and I feel well-looked after.

User
Posted 02 Jul 2014 at 23:50

Gents

just a thought, as an alternative to the mattres protector, i got some tenna 4 pants and went to bed in briefs with pad inside then tenna 4 onas well, this means the other half is not bothered by the mattress protector. I would wake up with the urge to go if i tried to hold on i would leak before i got to the loo.

Thanks Chris

User
Posted 03 Jul 2014 at 01:53
Luther, I know this is counter-intuitive but stopping your fluid intake isn't a good idea. It is important for your recovery to have regular drinks and the bladder will over-compensate for the lack. Try to avoid caffeine, increase your cranberry juice intake during the day and stick to water in the evening. No idea why you are referring to a Kylie sheet but if it is waterproof then it will be no great problem if you leak. We had two waterproof sheets so that in the early days I could wash one while using the other - that was more comfortable for John than trying to sleep with a pad on. Modern waterproof sheets are not plasticky so it made no difference to me to be sleeping on one.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Nov 2014 at 17:57

Excellent news, Morris!

Hope I'll be joining the 'Undetectables'!! 

Awaiting my first post-op PSA (on 19th Dec) with some trepidation!

 

Regards,

 

Jacey.

User
Posted 25 Nov 2014 at 18:32

Good news Morris!

I have my 2nd PSA result and review coming up early in December.. ( 1st PSA result < 0.01 undetectable in early August ) so squeaky bum time for me also..

Pleased to see you've made good progress with the your incontinence issues....

At long last after 5 months I'm beginning to see an improvement in that department......although nowhere near as good as you are.....but an improvement for me nonetheless.....

Like you, I've no regrets in taking the robotic surgery route, and hopefully I will recover a greater degree of continence over the next few months or so..... a small price for me  to pay in endeavoring  to stay clear of this wretched disease..

Best Wishes 
Luther


 

 

 

 

Show Most Thanked Posts
User
Posted 16 Jun 2014 at 18:08

Hi Roddy,

Just read your post.

I had robotic assisted surgery ( da Vinci ) on 12-06 2014 at Bristol

I was discharged approx 24 hours later...... nerves were spared on one side and lymph nodes were removed as a precaution..

Catheter scheduled to be removed in 2 weeks from op date.

A review and histology report with my surgeon is scheduled for 8 weeks.... 

If I can be of any help please feel free to PM me ..

Cheers http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 16 Jun 2014 at 19:42

Hi Roddy good luck for Friday,I had my op getting on towards 12 months ago July 12th in fact,don't be to disappointed if continence is not regained right away mine took until Christmas.On that note have they told you about the pelvic floor exercises although the jury is out on just how much these help it does not hurt to do them pre op to know how to do them post op and when the catheter is out.Get some good books in or on a e-reader if that is your preference,you'll not feel up to much for a while so use the time to totally relax,once again all the best.

User
Posted 16 Jun 2014 at 21:57

Hi Roddy,

 

I had my Da Vinci RP 7 weeks ago. The operation itself was a non-event albeit somewhat stressful at the time and was somewhat longer than I expected it to be. I spent three days in hospital due to a complication with the drain. As you say, it is the after effects that cause distress. I had one or two problems in the two weeks after the op, got over them and I am now feeling much better. The operation has been a great success apparently and I'm awaiting a letter from my surgeon confirming what he told me last Monday. Incontinence is showing signs of improvement but nothing yet in the ED dept.

 

Good luck with the operation. If I can be of any assistance at all please ask,

 

Steve

 

 

User
Posted 17 Jun 2014 at 11:52

Thanks for all the support, chaps.  I certainly have my kindle fully loaded as well as a good supply of proper books.  I have a box set of Mrs Brown's Boys to watch - as I am going to piss myself anyway I might as well piss myself laughing!

I think I have got myself prepared for the post op scenario by following what people have recommended on this site eg bucket for the night bag, jogging pants etc.  Anyone have any advice on the best sort of underpants for both when catheter is in and when it is removed?  I have some trunk type affairs which are a snug fit.  Will they do?

I would be interested to know what you did about letting people know of the condition and treatment.  We have told very few people.  I have let my brother know for obvious reasons and also my sister.  Apart from that the only people we have told are some close friends (a couple) who live very near to us.  We felt it best to let them know so my wife would have someone to talk to other than me about what was happening.  I just want to get on with things in my own way. We have not told our only daughter as she is pregnant with her first baby, due at the beginning of October.  I just didn't want to spoil her joy. 

 

As for now I am busy get some jobs done and getting in any heavy shopping etc so I don't burden my wife too much whilst I am recovering.

Cheers for now!

User
Posted 17 Jun 2014 at 14:07

I tried to keep it to myself but it somehow got out and everyone knew very quickly. I live in a village and frankly nothing is secret here for very long. Having all our friends wish me luck and receiving all the Get Well Soon cards was a great help actually and now the good news has been received I will be very pleased to share that with everyone too.

 

Steve

User
Posted 17 Jun 2014 at 14:45

I also live in a village and told most of my neighbours plus all the people who I meet regularly when out walking the dogs...

Like Steve, I found talking to people about things helped me tremendously.... I appreciate everyone deals with things in their own way

The messages of encouragement I've had since my diagnosis became common knowledge around our way have been very reassuring....

In fact I now know two people who I meet out whilst walking dogs who have had similar diagnosis within this last 18 months.. one elected for surgery and the other radiotherapy....... both are doing well! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

With regard to underpants, I've found the brief type to be more suitable for me whilst my catheter is still in situ.... they help hold everything in place and also allow some tissue to be wrapped around the exit of catheter to absorb any by- passing that can occur especially when opening your bowels.... 

Edited by member 17 Jun 2014 at 14:46  | Reason: Not specified

User
Posted 17 Jun 2014 at 18:07
Re the underwear buy some larger than you normally wear,you will be a bit swollen to begin with.
User
Posted 17 Jun 2014 at 18:41
Hi Roddy good luck for next Friday, I had the da Vinci last Sept,home next day,catheter out after 7days, no pads after 2weeks, still got a bit of E/D but things are improving with the help of the pump and sildenafil 50mg. Had 9month check 2weeks ago PSA undetectable.So, fear not my friend, and good luck with your recovery. Diesel
User
Posted 24 Jun 2014 at 11:57

Well, here I am 4 days after the RALP.  Op was done on Friday morning and all went well according to the surgeon.  No complications and everything seemed to be as anticipated - no visible signs of spread beyond the prostate and he removed slightly enlarged lymph nodes. Nerves saved on one side and partially on the other.  That is good news - nothing worse than predicted - although, of course, the pathology results will be the determining factor and a couple of weeks to wait for those.  I didn't want my wife to have to hang around so she left as I went down to the theatre.  When we saw the surgeon he promised to phone her and let her know how things had gone and he kept his promise.  That was a really nice touch.

Recovery feeling slow.  I have a lot of bruising.  I think this must be more than usual as the nurses asked if I was prone to bruising.  I was not discharged on the day after the op as there was a problem with the drain leaking.  However, all wounds OK and all dressings off and had my first shower this morning.  That was great.  Penis and scrotum still very bruised and swollen.

I'm moving Ok but still feel tight and swollen in the abdomen.  Remain constipated but have passed plenty of wind.  I'm not liking the catheter and pee bag but only 3 days to go with that now.  I am assured that the catheter won't come out and logically I can understand that and have read all the info.  But there is still a totally irrational fear of it coming out.

Basically, recovery is slower than I had thought it would be but I expect I was totally over-optimistic.

 

I must say that I have been so impressed and so grateful to all the NHS staff who have been dealing with me - in the hospital, the specialist prostate cancer nurse and the community nurse.  All have been fantastic and I cannot think I could have got better treatment anywhere.  I also have a wonderful wife whose love and support has been brilliant.

Despite the discomfort at the moment I know I made the right decision to opt for surgery and I am optimistic about the future.  If anyone reading this with a similar diagnosis to mine is contemplating the Da Vinci surgery I hope this helps and gives useful information.

User
Posted 24 Jun 2014 at 12:18

Good to hear things went well Roddy... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

I'm currently 12 days post op ( da Vinci )....... my catheter is coming out on 30th June ( it will have been in just over 2 weeks )

Keep taking your laxatives and I hope 'things' get back to normal soon...

Cheers

User
Posted 24 Jun 2014 at 19:19
Great news Roddy. Hope things continue to get better.

Very best wishes

Carlos

Life's a Marathon. Run in peace.

User
Posted 24 Jun 2014 at 19:58

Good news Roddy I had OP 31/03/14 be patient you will be ok IM swimming walking and doing more or less everything I was before OP good luck with follow up resuts I know its a nervous time waitng for those.

 

Frank

User
Posted 24 Jun 2014 at 20:00
Hi roddy, glad that all is going well for you.

You asked specifically about what type of pants to wear post TWOC. I have no medical knowledge or experience nor am I trained in the use of pants to control urine leakage, however I am experienced in post op post TWOC urine leakage, sadly.

I used to wear boxers. After my op and TWOC I went to briefs. I have learned purely by chance that the briefs provide additional support and control for urine flow, that is not provided by "going Commando" or almost GC by wearing boxers, or in my case swimmer shorts. When putting on swimmer shorts recently I had some involuntary leak moments, just a drop, and sometimes it did not escape into the pants but got past one sphincter and I caught it with the other by tensing. Not Sherpa Tensing! Briefs had held it though, as they always apply a bit of pressure to the groin, boxers don't.

HTHY

dave

User
Posted 25 Jun 2014 at 00:01

Well done Roddy. Get well soon.

 

Steve

User
Posted 25 Jun 2014 at 19:49

Thanks for all the advice and best wishes.

 

Unfortunately I have had a bit of a setback.  On Tuesday morning I noticed that the bruising, which was already fairly extensive, had spread quite considerably and my penis had become blacker and more swollen.  As advised on discharge I contacted the ward at the hospital and was advised to come back in to be checked.  They decided that I needed to be readmitted for further tests.  So I stayed in last night.  The nurses were surprised to see me but were all amazed at the extent of the bruising.

 

Today I had further blood tests.  I had a suppository which enable me to go for the first time since the op - a great relief.  I also had an ultrasound.  Fortunatley I have been given the all clear and I am now back home again.  Because of the extent of the bruising I have to stop the injections for a few days.  Because of the bruising and swelling to my penis the catheter will not be removed this Friday but a week later.

 

Let's hope it improves from here.

User
Posted 25 Jun 2014 at 23:17

Roddy

 

Very similar situation, Know what you mean about fearing the catheter coming out. I was a bit slow off the mark with exercise post op, but once I got going recovery improved faster, back at work after 4 weeks. I was very fortunate with my bladder control, put it down to 4 months of exercises pre op. My histology showed positive margins but had PSA test two weeks ago and got the all clear. Blood in the urine was slow to clear, if in doubt use your urology nurses for advice. Motion patterns may be strange, take it steady give yourself plenty of time and no straining. Drink plenty, know doubt you have already found out how horrible water tastes. In a few weeks time you will be back to normal.

All the Best Chris

 

 

 

User
Posted 02 Jul 2014 at 12:56

To continue...

After all the above at the end of last week I noticed a discharge from my penis.  I phoned the ward at the hospital who suggested that I made an appointment with my GP.  I got an appointment that afternoon.  The GP thought that the discharge did not show any signs of infection and my temperature was OK.  She did put me on a course of antibiotics, which I finished today.  The problem has cleared up so it was just a scare.

 

Two days ago, a week after the dressings on the wounds came off, the main wound started to ooze blood.  I got myself to the minor injuries unit at our local health centre.  The nurse there said stitches were all OK and there was no sign of infection.  She explained that what had happened was nothing to worry about but was simply internal blood from bruising finding a way out.

 

It has not been a smooth ride but I am now looking forward to the catheter finally coming out on Friday.  I had a huge box of pads delivered the other day, arranged by the hospital and I have many packs of Cialis to start taking.

 

I have to repeat that everyone I have had dealings with has been absolutely fantastic.  Everyone at the hospital has been great, as has the specialist nurse who phones regularly.  My local GP practice has been very good and the prostate cancer UK nurses, who I have phoned a few times since my original visit to my GP, have been very patient, understanding and helpful.  Last, but not least, this board and its members have also been a great source of information and support.

 

Finally, a question for those who have been through the RALP.  At the moment, my night bag fills up with 1 to 1.2 litres.  How do you cope with the transition to pads overnight?

User
Posted 02 Jul 2014 at 17:32

An interesting question. Like you I was filling the catheter bag overnight. The catheter came out and for a couple of nights I leaked a bit and then got up around 5am for a visit to the loo and emptied my bladder. After that very few leaks at night and a usual pee around 5 or 6 am.

 

Steve

User
Posted 02 Jul 2014 at 17:46

Had my catheter out on Monday ( 30th June )

Leaking like a sieve during the day and at night so far .....http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

I've been able to minimise leakage at night by stopping  my fluid intake a good few hours before I go to bed....... but I still have to change a pad during the night despite this.
I also put a 'Kylie' sheet on the mattress  for peace of mind, but to date it has not been needed...

 
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