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Da vinci surgery - my experience

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 03 Jul 2014 at 12:31

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 12:32  | Reason: Not specified

User
Posted 04 Jul 2014 at 09:21

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 14:27

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 18:47
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 19:09
Thanks Dave. I'm glad this has been helpful. Good luck with whatever path you choose.
User
Posted 04 Jul 2014 at 19:21

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 21:00

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 16:27

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 17:20

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 11:25

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 14:59

Roddy, brilliant news - congratulations :-)

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

User
Posted 18 Sep 2014 at 13:31

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 14:53

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 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


 

 

 

 

User
Posted 25 Nov 2014 at 18:45
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 19:39

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 15:43

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
 
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