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Da vinci surgery - my experience

User
Posted 16 Jun 2014 at 12:59

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 13:33

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 21:46

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 12:59

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 22:50

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 00:53
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 16:57

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 17:32

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 17:08

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 18:42

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 20:57

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 10:52

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 13:07

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 13:45

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 13:46  | Reason: Not specified

User
Posted 17 Jun 2014 at 17:07
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 17:41
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 10:57

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 11:18

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 18:19
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 18:58

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 19:00
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 24 Jun 2014 at 23:01

Well done Roddy. Get well soon.

 

Steve

User
Posted 25 Jun 2014 at 18:49

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 22:17

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 11:56

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 16:32

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 16:46

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...

User
Posted 02 Jul 2014 at 22:50

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 00:53
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 03 Jul 2014 at 11:31

Hi Lyn, 
Thank you for your advice....

I am  aware of the importance of staying hydrated, and I do drink plenty during the course of the day...

I never drink coffee and only one or two cups of tea during the course of a normal day... the rest of my fluid intake is mainly water and the occasional  non fizzy diluted soft drink..... I have at least 2 litres of fluid during the day ( is this enough, or too much? )

Maybe I should try cranberry juice if you think that may help my bladder re-adjust?

Kylie is a well know incontinence brand used in the caring profession, and yes they are waterproof http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif  ... I use this in addition to the waterproof mattress cover I have fitted ( belts and braces I suppose ) 

The Tena pants that Chris has suggested seems like  a good idea...  Thanks for that Chris

Edited by member 03 Jul 2014 at 11:32  | Reason: Not specified

User
Posted 04 Jul 2014 at 08:21

Just a thought

http://www.nhsbsa.nhs.uk/1126.aspx you can get this NHS exemption card as I expect you will need prescriptions for stuff at some stage, this was not never mentioned to me at all and you are entitled

 

Peter (Post Da Vinci July 2012 and still running well)

User
Posted 04 Jul 2014 at 13:27

Catheter taken out this morning.  Very painless and so good to be rid of it.  Had to drink lots of water and than a flow rate test, which was very satisfactory.  Had a bout 4 pees including the flow rate test and all had a much stronger stream and less dribbling than before the op.  Bladder scan showed no urine retention.  There are no signs of leaking yet and the sister felt these were all very good signs.  I said to her that I wanted to be one of the 30% of my surgeon's patients who regain continence almost immediately - she said that I was in the top 3% on my performance this morning.  However, although I am encouraged and very happy so far, I will reserve judgement for a few days.

 

Following on from Luther's point about reducing fluid intake a few hours before going to bed, this is exactly the advice the sister gave me.  She said to keep fluid intake well up during the day and then take minimal fluid from about 6pm and this should ensure there are no night - time problems.

 

Not sure about an NHS card.  As I am 62 I get prescriptions free anyway.  Does the card confer anything more?

 

Today I am very, very happy and feeling great.  Just anxious now to get the pathology report and see what the consultant says on 5th August.  I have to have a blood test to check PSA a week before that appointment.

User
Posted 04 Jul 2014 at 17:47
Hi Roddy,

I have just found this thread. It is most helpful as, having just been told by my hospital, post template biopsy, that treatment is now advised, I am considering my options, RP, Radiotherapy or HIFU. I favour RP, but will be having appointments with each of the specialists next week, so it is very helpful to have learned your experiences and those of other contributors. I do not expect a walk in the park, but it is good to know what to expect. Like you, my NHS experience thus far has been good. Wishing you a speedy recovery.

Dave

User
Posted 04 Jul 2014 at 18:09
Thanks Dave. I'm glad this has been helpful. Good luck with whatever path you choose.
User
Posted 04 Jul 2014 at 18:21

Wow!

That's brilliant news so far Roddy!........ Long may your successful recovery continue http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

I can well understand how happy you must feel at this moment in time....

I'm struggling at the moment with my incontinence issues, but I have seen a small improvement since my catheter was removed on Monday.... so I'm encouraged by that... 

I have to say, at no point have I regretted my decision to go down the robotic assisted surgery route and 3 weeks on from my surgery I'm learning to manage my leakage, and even going out for walks with the dogs!

Like you , I will be a  anxious about my histology report in a few weeks time but am prepared for follow up RT if required...

Best Wishes

Luther

User
Posted 04 Jul 2014 at 20:00

Roddy Luther

 

I got my histology result three weeks after op and was initially disappointed to be told there were positive margins, I did some research into positive margins and was more relaxed with what I saw. The PSA test a few weeks later was undetectable so confirmed my optimism.

 

Hope yours goes well

 

User
Posted 26 Jul 2014 at 15:27

Chris, Roddy, Luther & others.

 

Thanks to all posters who've shared their insights on this board. I offer my case-history to date in the hope that some of it may be helpful to those embarking on what can be a bewildering journey. P Ca patients interested in post-op experiences may wish to fast-forward to June 2014.

March 2011- I pitch up at my local urology clinic having scored PSA 4.7. Consultant Mr A performs DRE & can't find any obvious abnormality. Mr. A pens elegantly sarcastic letter to my GP, bemoaning lack of primary care counselling re PSA test & prostate problems in general.

Nov 2011- PSA is now 4.2. Whoopee !  Mr. A says to come back a year later.

Nov 2012 - PSA now 5.4 Locum consultant Mr. B thinks 5.4 high & wants to see me again in 2 months.

Jan 2013 - PSA now 5.88. Boo-Hiss ! Mr B advises TRUS B/X which I don't think sounds my cup-of-tea.

Mar 2013 - PSA now 5. Dr X from a sister hospital in the same trust performs TRUS-BX at my  local clinic.  

April 2013 - Mild communication screw-up at Urology clinic. I'm seen by a hesitant senior house clinician with a less-than-desirable command of English, accompanied by a medical student. She is under the erroneous impression that I've already been informed of the biopsy result. "No"  I say, as brightly as possible in the circumstances, "that's why I'm here" . She looks horrified, & doesn't think to re-assess a situation in which the presence of the student may be inappropriate. I fear she may cry as she tells me I have 3+3 Gleason carcinoma in 5 of the 12 biopsy cores, involving 25% of the organ volume. Oh well.

May 2013 - Appointment with oncologist Mr C who enumerates the treatment options, & books me in for an MRI scan in the summer. Now that I am a confirmed prostate cancer suffererer I read as much literature on the subject as I can assimilate, & decide to modify my diet, which wasn't desperately unhealthy to begin with, to an ultra-low-fat, pomegranate-&-tomato-rich regime, while forgoing any bicycling activity.  

August 2013 MRI scan.

September 2013. Repeat PSA & MRI result. Dr. Z tells me that the scan hasn't identified any obvious tumours or evidence of invasion of lymph nodes by the cancer & my PSA has dropped to 3.7, the lowest it's been since we stepped aboard this urological roller-coaster. It's reassuring, but I'm in a limbo of indecision regarding treatment options. Further consultation with Dr Z & Mr D  decide me on the "active surveillance" route for the time being.

April 2014 PSA 4.88 & second biopsy performed. Again I've no real problems with either the TRUS-BX or its aftermath, but results are less encouraging. Gleason 3+4 with 2 out of 12 on one side showing some grade 4 cells. Bah ! So much for pomegranate juice.

May 2014, The MDT decide it's time to move me from active surveillance to active treatment, which now encompasses a bewildering array of more-or-less unpalatable procedures - 4 different types of surgery and another half-dozen radiological & hormonal options, all of which are rated as "equivalent in terms of outcome". Such stats are of course meaningless to individual patients. Advanced proton beam therapy available in some EEC countries isn't on the menu, as not approved by NICE. Cryotherapy not suggested as an option at my local, although I'm now intrigued to find that it is available in the UK.

After reading up as much as I can assimilate on websites such as this I opt for Robotic LRP.

June 26th 2014. Robotic LRP at local hospital. No post-op pain or complications & discharged 48 hours later. Very grateful for fantastic NHS care throughout. No real probs with catheter, & I'm even able to hop around on public transport.

July 11th 2014. Catheter removal & flow test, which specialist senior nurse pronounces to be very satisfactory. Sent home with bundle of info-sheets from Prostate Cancer UK & a starter-pack of pads. Pelvic floor exercises initiated, & slow improvement in leakage rates over the next 2 weeks, but still get through approx 6 pads a day. Dry at night, thank goodness. Will persevere with pelvics.

July 25th. Histopathology report indicates clear margins on excised prostate, so relief all round. I'm booked-in for a repeat PSA in 3 months time. Some commenting on this board seem to have to wait for 8 weeks for pathology results, which strikes me as unnecessarily prolonging an anxious time.

I think my story so far indicates the value of consistent PSA testing over several years, but it's salutary to realise that only 9 months elapsed between my scoring PSA 3.7, a level which would not normally trigger a referral, and confirmation of P Ca Gleason 3 + 4 in 7 out of 12 cores.

So that's it for now. Good luck to you all - & thanks again for invaluable support through this forum !   
   


User
Posted 05 Aug 2014 at 16:20

Time for an update from me.

 

I saw the consultant urologist today.  The news was very good.  He said my PSA was 0. The pathology had confirmed that the Gleason score was no worse than the biopsy had indicated, at 3+4.  Margins were clear and the lymph nodes removed had shown no signs of cancer.  He did say that the cancer had started to break out of the capsule and there was therefore an increased risk on recurrence but he did not think further treatment was warranted.  He will, however, make an appointment for me to see the oncologist.  Otherwise, a repeat PSA test in 6 weeks.

 

Continence remains great, just the odd small squirt occasionally.  I am not wearing pads, except when I am going out for a long time as a precaution - even though they have not proved necessary.

 

Not there yet with erections, although there are signs of life down there.  I will be carrying on with the Viagra.

 

I realise I have been very lucky.

User
Posted 17 Sep 2014 at 10:25

I had another follow up with the consultant urologist yesterday.  PSA remains at 0 and I will now be on 3 month blood tests for the next two years.  As I was a marginal T3 he says there is a 20-30% chance of recurrence but everything is heading in the right direction.

All still going well with the weeing - just the odd small leak.  Erections not happening yet, although there are signs of life down there.  I'm on 25mg Viagra nightly, increasing it to 100mg once per week.  Consultant says to give it another 6 months and then will refer to ED clinic if no improvement.

 

All in all, I couldn't be happier to be where I am today, especially given the anguish and trauma of the initial diagnosis.

User
Posted 17 Sep 2014 at 13:59

Roddy, brilliant news - congratulations :-)

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

User
Posted 18 Sep 2014 at 12:31

Hi Roddy,

 

We seem to be in much the same position and my histology was virtually the same as yours. Not sure what the future holds but at present it is the best we could have expected. Squeaky bum time again in three months then...http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

 

Steve

User
Posted 25 Nov 2014 at 13:53

Hi Steve, Roddy, Luther,Chris,

Squeaky bum time, indeed. At the beginning of Aug my post-op histology came back showing bilateral Gleason 3+4 with clear margins staging pT2c - good news & in line with the TRUS b/x in May. We were given the gladsome tidings by a locum senior house officer, who clapped me on the back & ordered me to attend the clinic's bloods unit for a PSA test in 3 months time, which I dutifully did at the end of Oct. No follow-up consultation or review by any of the clinical urologists though, & no reply to the messages I left on their secretary's voicemail 2 weeks later, so I called my specialist nurse for the PSA result - fortunately near-as-dammit undetectable at 0.00. Early days, but very encouraging. Should have a further PSA & proper consultation in Jan.

Steady improvement in continence over the 5 months since the op, with now just an occasional dribble. I could probably abandon the single Tena Level 1 pad I apply daily, as its main function is now that of comfort blanket. Night-time continence returned very quickly after the op, & the Kylie-sheet remains pristine.

I'm now doing the pelvics 3 times a day, & am often chided by my better half if she thinks I'm slacking. In time we'll pay more attention to the ED side of things, but at the moment I'm quite content with progress thus far. 5 months post-op & absolutely no regrets at going down the Robotic RP route.

Best Wishes to All,

Morris

User
Posted 25 Nov 2014 at 16:57

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 17:32

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


 

 

 

 

User
Posted 25 Nov 2014 at 17:45
I guys I too am in the squeaky bum club I go for my third PSA test post Da Vinci on 15th December which will determine what sort of Christmas I have, first two were 0.01so fingers crossed for everyone.
User
Posted 25 Nov 2014 at 18:39

Thanks for supportive posts, Frank, Jacey & Luther. Like Frank I'll be keeping as many fingers crossed as is anatomically feasible for those in the December squeaky bum club....Glad you've started improving on the continence side of things, Luther, & I hope this upward trajectory will be sustained in the coming months !

All the Best,

Morris

User
Posted 13 Dec 2014 at 14:43

Hello William1969 (Good year that - It's the year I got married!!) Welcome to the club

Glad all seems to be going well for you.

To you and all in the Squeaky Club, I hope you all get good news before Christmas and can relax and enjoy it.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 16 Dec 2014 at 13:33

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 16 Dec 2014 at 16:16

Originally Posted by: Online Community Member

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.



Very good news Roddy!

My next squeaky bum time is scheduled for early April also.....http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Relax and enjoy your Christmas and forthcoming break to the Caribbean!

Best Wishes

Luther

User
Posted 17 Dec 2014 at 00:09

Pleased for you, Roddy.

Have a wonderful time next month!

Jacey

User
Posted 17 Dec 2014 at 09:45

Nice one Roddy, keep it up.

 

My next is in January. It would have been this month but the insurance company says I've run out of funds for this year so I need to leave it for a couple of weeks.

 

Steve

User
Posted 17 Dec 2014 at 12:27

Great news, Roddy ! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif Enjoy a squeaky-bum-free time in the Caribbean ....searches in vain for an envious-faced emoticon....

I've got my 6 months post-op PSA in Jan ( I think Steve has as well ) & with a bit of luck a consultation with a real-life urologist.

Mention of holidays in the sun turns my mind to the ED effects of RP, neglected hitherto in my own case. Time for some New Year resolutions....will first investigate what Lyn & others have posted on the ED threads...http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

Merry Christmas,

Morris

User
Posted 18 Dec 2014 at 00:34

Excellent news Roddy. Have a great holiday - we will be in the Gambia for Christmas 🌞🎅

Edited by member 18 Dec 2014 at 00:34  | Reason: Not specified

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

User
Posted 21 Mar 2015 at 11:25

It is now 9 months after my op.  This week, I had my latest appointment with the consultant following a blood test.  I am delighted that the PSA level is still undetectable.  I know there is still a long way to go but each small step feels like a little victory.  Now for the next squeaky bum time in 3 months!

User
Posted 21 Mar 2015 at 12:00

Good news Roddy!

Squeaky bum time for me again in April http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 21 Mar 2015 at 12:49

Well done Roddy. ...squeeky bum.time is upon me. I see the oncologist for my results on Tuesday

Bri

User
Posted 21 Mar 2015 at 16:29
Roddy

Great news,long may it continue. I am a couple of months in front of you, 28th April will be one year on.

Hope all goes well for Bri and Luther.

Thanks Chris

 
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