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Retzius-Sparing Laparoscopic Radical Prostatectomy

User
Posted 15 Jun 2018 at 16:48

Day 1: Monday 4th June 2018


 


Retzius-sparing Robot Assisted Laparoscopic Radical Prostatectomy on the NHS at the Royal Surrey County Hospital.


 


Seven hour wait - 9 hours “nil by mouth”. Three hour procedure. Minimal blood loss. Woke up in the recovery room around 5 pm, all wired up to life support monitors and umpteen pipes in and out of me via seven “keyholes” and multiple cannulas. Didn’t feel a thing as I had been injected with a spinal anaesthetic together with a general anaesthetic. Mouth very dry. Moved to General Surgery ward. Find out I have been treated to some “Manscaping” - a half Brazilian above my bollocks!


 


Day 2: On the ward. International nursing and support staff everywhere - nurses from Uzbekistan, Spain, the Philippines and India. Where would the NHS be without them? Surgeon says op went very well, and he was able to perform nerve-sparing as well as Retzius-sparing procedures during my surgery, which my local urologist said would not be possible using the techniques he practices. In bed all day connected to drips and drains. First three drains removed, I thought I was being disembowelled for a few minutes! I could have been discharged that night, but as I had a long car journey home, the consultant and I agreed I should stay another night. First fart, followed by loads more. They inflate your abdomen with gas so as to form “a cathedral” so they have a workspace. The gas has to find its own way out, sometimes over a period of weeks!


 


Day 3: Discharged with enough drugs to open a pharmacy. 115 miles journey home. Felt every speed hump, pot-hole and drain cover! Stopped at two pubs on the way to recover from the battering. There were various vitamin pills, laxatives, ibuprofen, tablets to prevent stomach damage from ibuprofen, fibre gel drinks - didn’t need any of them, save the occasional paracetamol. Also a plumbers’ merchant’s full of pipework, valves and taps and bags for the catheter. There was also 28 day’s worth of a self-administered anti-coagulant injection. The needle is so fine you can hardly see the exit point on your thigh, and no bleeding. I am a big baby, but I hardly feel a thing


 


Day 4: First bowel movement. Less discomfort. Suspect I had stomach ache due to disruption of my peristaltic bowel action as a result of the anaesthetics and surgery, rather than the surgery itself. Urine now looks normal, no longer pink - a good sign? The hospital blurb on discharge states you can be peeing blood for up to two weeks. Suspect my surgeon and his sidekick da Vinci are very good at internal needlework. Weigh myself, have put on two pounds despite eating barely anything in hospital as my mouth was so dry. Perhaps all the intravenous drips I was connected to were packed with calories!


 


Day 5: Up at 2am, as the night catheter bag wasn’t filling properly. Turns out the tube was kinked in bed by my tight underpants. I go commando now. No need for any pads....yet. Taken to going commando in the day too, and wearing braces as my belt irritates the still-sutured keyholes. Had a slight temperature of 99.8°F and felt sleepy. A couple of paracetamol sorted that, but I didn’t leave the house till 3.30 in the afternoon.


 


Day 6: Virtually back to normal. Cannot believe I had major abdominal surgery less than six days ago. Still get a twinge when I cough. Penis is now badly bruised and has taken umbrage at his sexual assault by an automaton, and withdrawn into my swollen scrotum like a frightened tortoise’s head. When I say “back to normal”, I wonder if my surgeon does penis extensions? Shrinkage is supposed to improve with time. If not, you may see me on a future episode of “Embarrassing Bodies”! Out supermarket shopping and then off to the pub. Felt a bit tired in the late afternoon.


 


Day 7: Slept right through from 10pm to 4am (normal for me) and have now got used to the catheter pipework and can sleep on any side. Mr Tortoise is poking his head out to see what’s what. More supermarket shopping, cooking full English, then off to the pub. Starting to get the occasional dribble of wee from my urethra - at least that shows it’s all reconnected up properly!


 


Day 8: Tired again this morning, but every day the slight discomfort and itching around the stitched-up keyholes improves.


 


Day 9: Today is a big day. At 9 am I am to turn off the drain tap to the catheter bag and allow my bladder to fill and begin to micturate normally. I have to record the times and amounts of urine passed. Her Loveliness says: “I hope you won’t be using my measuring jugs”. I did point out that urine is sterile and promised to put them through a dishwasher hot wash before putting them back in the kitchen cupboard. 08.30: Catheter bag stop-tap closed. 09.36 first normal urination through a swollen (and shrunken) penis. 100ml, since you ask. Amazed that I can stop and start as before my op, with no “razor blade” sensation. A bit disappointed a little later when a sly fart resulted in a bit of a dribble. Still, this is day 1 without the bag. Bag is binned, and various micturitions (unquantified) have taken place around Coventry. I am wearing the very slimmest Tena pad, which is just as well, as contractions of my anal sphincter seem to encourage a dribble from my urethral sphincter. No problems with coughs or sneezes though.


 


Day 10: Supra-pubic catheter removal. My local hospital has agreed to do it so I don’t have a 230 miles round-trip for a quick out-patient procedure. The nurse rips it out, brief sensation like a needle. Dressing applied and my treatment is complete. My first wee is pinkish with tiny spots of clots. Continence is good, incompetence is the same as before the operation!


 


I am amazed at the speed of my recuperation and at the skill of my surgeon who facilitated it, and so thankful to our often maligned, over-subscribed and under-funded NHS. I honestly feel almost as well as I did the day before my surgery, only 10 days ago. I had no symptoms then.


 


Follow-up meeting with surgeon is due in July, to discuss the histology of the removed gland and the way forward. As I had 42 cores sampled during my template biopsy, I doubt whether my overall score or grading will change much. 


 


Hopefully I am “cured”, but I am starting to wonder if PCa ever really goes away “forever”. Recurrence rates are quoted for 5 and 10 years, given specific parameters, but not for 30 years. Not that I expect to live to 92.....


 


But on from that? I remember what was said when Ronald Reagan had pre-cancerous lesions (polyps) removed from his bowel years ago. “If everyone lived to 150 everyone would have bowel cancer”.


 


Fortunately, I have just had the all-clear from the NHS “s***-on-a-stick” bowel cancer screening programme!


 


Keep breathing.


 


Cheers, John.


 


 

Edited by member 16 Jun 2018 at 04:12  | Reason: Not specified

User
Posted 15 Jun 2018 at 16:48

Day 1: Monday 4th June 2018


 


Retzius-sparing Robot Assisted Laparoscopic Radical Prostatectomy on the NHS at the Royal Surrey County Hospital.


 


Seven hour wait - 9 hours “nil by mouth”. Three hour procedure. Minimal blood loss. Woke up in the recovery room around 5 pm, all wired up to life support monitors and umpteen pipes in and out of me via seven “keyholes” and multiple cannulas. Didn’t feel a thing as I had been injected with a spinal anaesthetic together with a general anaesthetic. Mouth very dry. Moved to General Surgery ward. Find out I have been treated to some “Manscaping” - a half Brazilian above my bollocks!


 


Day 2: On the ward. International nursing and support staff everywhere - nurses from Uzbekistan, Spain, the Philippines and India. Where would the NHS be without them? Surgeon says op went very well, and he was able to perform nerve-sparing as well as Retzius-sparing procedures during my surgery, which my local urologist said would not be possible using the techniques he practices. In bed all day connected to drips and drains. First three drains removed, I thought I was being disembowelled for a few minutes! I could have been discharged that night, but as I had a long car journey home, the consultant and I agreed I should stay another night. First fart, followed by loads more. They inflate your abdomen with gas so as to form “a cathedral” so they have a workspace. The gas has to find its own way out, sometimes over a period of weeks!


 


Day 3: Discharged with enough drugs to open a pharmacy. 115 miles journey home. Felt every speed hump, pot-hole and drain cover! Stopped at two pubs on the way to recover from the battering. There were various vitamin pills, laxatives, ibuprofen, tablets to prevent stomach damage from ibuprofen, fibre gel drinks - didn’t need any of them, save the occasional paracetamol. Also a plumbers’ merchant’s full of pipework, valves and taps and bags for the catheter. There was also 28 day’s worth of a self-administered anti-coagulant injection. The needle is so fine you can hardly see the exit point on your thigh, and no bleeding. I am a big baby, but I hardly feel a thing


 


Day 4: First bowel movement. Less discomfort. Suspect I had stomach ache due to disruption of my peristaltic bowel action as a result of the anaesthetics and surgery, rather than the surgery itself. Urine now looks normal, no longer pink - a good sign? The hospital blurb on discharge states you can be peeing blood for up to two weeks. Suspect my surgeon and his sidekick da Vinci are very good at internal needlework. Weigh myself, have put on two pounds despite eating barely anything in hospital as my mouth was so dry. Perhaps all the intravenous drips I was connected to were packed with calories!


 


Day 5: Up at 2am, as the night catheter bag wasn’t filling properly. Turns out the tube was kinked in bed by my tight underpants. I go commando now. No need for any pads....yet. Taken to going commando in the day too, and wearing braces as my belt irritates the still-sutured keyholes. Had a slight temperature of 99.8°F and felt sleepy. A couple of paracetamol sorted that, but I didn’t leave the house till 3.30 in the afternoon.


 


Day 6: Virtually back to normal. Cannot believe I had major abdominal surgery less than six days ago. Still get a twinge when I cough. Penis is now badly bruised and has taken umbrage at his sexual assault by an automaton, and withdrawn into my swollen scrotum like a frightened tortoise’s head. When I say “back to normal”, I wonder if my surgeon does penis extensions? Shrinkage is supposed to improve with time. If not, you may see me on a future episode of “Embarrassing Bodies”! Out supermarket shopping and then off to the pub. Felt a bit tired in the late afternoon.


 


Day 7: Slept right through from 10pm to 4am (normal for me) and have now got used to the catheter pipework and can sleep on any side. Mr Tortoise is poking his head out to see what’s what. More supermarket shopping, cooking full English, then off to the pub. Starting to get the occasional dribble of wee from my urethra - at least that shows it’s all reconnected up properly!


 


Day 8: Tired again this morning, but every day the slight discomfort and itching around the stitched-up keyholes improves.


 


Day 9: Today is a big day. At 9 am I am to turn off the drain tap to the catheter bag and allow my bladder to fill and begin to micturate normally. I have to record the times and amounts of urine passed. Her Loveliness says: “I hope you won’t be using my measuring jugs”. I did point out that urine is sterile and promised to put them through a dishwasher hot wash before putting them back in the kitchen cupboard. 08.30: Catheter bag stop-tap closed. 09.36 first normal urination through a swollen (and shrunken) penis. 100ml, since you ask. Amazed that I can stop and start as before my op, with no “razor blade” sensation. A bit disappointed a little later when a sly fart resulted in a bit of a dribble. Still, this is day 1 without the bag. Bag is binned, and various micturitions (unquantified) have taken place around Coventry. I am wearing the very slimmest Tena pad, which is just as well, as contractions of my anal sphincter seem to encourage a dribble from my urethral sphincter. No problems with coughs or sneezes though.


 


Day 10: Supra-pubic catheter removal. My local hospital has agreed to do it so I don’t have a 230 miles round-trip for a quick out-patient procedure. The nurse rips it out, brief sensation like a needle. Dressing applied and my treatment is complete. My first wee is pinkish with tiny spots of clots. Continence is good, incompetence is the same as before the operation!


 


I am amazed at the speed of my recuperation and at the skill of my surgeon who facilitated it, and so thankful to our often maligned, over-subscribed and under-funded NHS. I honestly feel almost as well as I did the day before my surgery, only 10 days ago. I had no symptoms then.


 


Follow-up meeting with surgeon is due in July, to discuss the histology of the removed gland and the way forward. As I had 42 cores sampled during my template biopsy, I doubt whether my overall score or grading will change much. 


 


Hopefully I am “cured”, but I am starting to wonder if PCa ever really goes away “forever”. Recurrence rates are quoted for 5 and 10 years, given specific parameters, but not for 30 years. Not that I expect to live to 92.....


 


But on from that? I remember what was said when Ronald Reagan had pre-cancerous lesions (polyps) removed from his bowel years ago. “If everyone lived to 150 everyone would have bowel cancer”.


 


Fortunately, I have just had the all-clear from the NHS “s***-on-a-stick” bowel cancer screening programme!


 


Keep breathing.


 


Cheers, John.


 


 

Edited by member 16 Jun 2018 at 04:12  | Reason: Not specified

User
Posted 23 Oct 2018 at 11:05
oh and you forgot to mention that the amazing mpMRI that you advise everyone to insist on failed to spot that you had locally advanced spread and you will probably need salvage treatment :-/

Also worth noting that the surgeon may or may not be the best in the world but is unusual in that he employs PR people to do his marketing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2018 at 18:02
Despite the other stuff, I am genuinely pleased that your op has gone so well this far and I think it is looking like a very exciting development for those to be diagnosed in the future. Personally, I wouldn't let a surgeon that only does 70 ops a year anywhere near someone I love :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 15 Jun 2018 at 18:03

That's absolutely fantastic news, John! Many congratulations on an obviously very skilful surgeon and such a swift recovery.


Chris

User
Posted 15 Jun 2018 at 20:33

John


Sounds like an improvement on the conventional DaVinci and a bonus not having a urethral Catheter. 



 “I hope you won’t be using my measuring jugs”. I did point out that urine is sterile and promised to put them through a dishwasher hot wash before putting them back in the kitchen cupboard."


As a member did point out to me a few years ago on the subject of measuring jugs " the Yorkshire puddings never tasted the same afterwards"


Take it easy but not too easy.


Thanks Chris

Edited by member 15 Jun 2018 at 20:34  | Reason: Missing word

User
Posted 16 Jun 2018 at 05:56

Originally Posted by: Online Community Member


John


Sounds like an improvement on the conventional DaVinci and a bonus not having a urethral Catheter. 



Yes, having felt the after-effects of urethral catheter insertion and removal during my template operation, I shudder to think what it must be like to wear one for up to two weeks whilst awake. When I was having my supra-pubic removed there were helpful leaflets in the room entitled “Self-catheterisation”. Ugh!

User
Posted 16 Jun 2018 at 12:03

Interesting and well written account.  I read your profile.  Good of the surgeon to take you from private to NHS, that once happened to me with a skin cancer but some seem to have problems transferring.   


You were very persistent and tolerant of your condition to wait for the treatment.   I couldn't have done it, if the Barber of Seville had been offered the day after I'd have been in. 


All the best.


Peter

User
Posted 16 Jun 2018 at 13:45

Originally Posted by: Online Community Member


I couldn't have done it, if the Barber of Seville had been offered the day after I'd have been in. 


All the best.


Peter



Yes, and I wonder if I would have ended up with the “Barber of Seville”, if I had been supine and done what they say is best for me.


The local surgeon here does around 70 RPs a year, and it was difficult to establish outcomes of his track-record. The surgeon who “did” me does 300-400 procedures all over the world annually, and his results are well publicised, as I am doing right here.


The nice registrar who did my template biopsy became a Consultant Surgeon this April, and I wonder how long it will be before he is let loose on his own on the general pubic (geddit?).


I read here of pain, nausea, rectal and urethral bleeding, two or three week catheters, year-long incontinence, months-long recuperation, yet here I am, 12 days post-op with none of the above, and I feel as well as I did on Sunday 3rd June, prior to my op.

User
Posted 16 Jun 2018 at 18:02
Despite the other stuff, I am genuinely pleased that your op has gone so well this far and I think it is looking like a very exciting development for those to be diagnosed in the future. Personally, I wouldn't let a surgeon that only does 70 ops a year anywhere near someone I love :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2018 at 20:11
Re your comment on another thread -

Fair point on the 'where do they cut' - I didn't know that it could be done through the belly. Some surgeons do Retzius through the perineum and the comparison reports in 2016/17 were between Retzius sparing and 'old style' perineal RP.

I have never named a specific surgeon as a rogue or suggested that you would be inundated with messages saying so - what I have said many times is that members should stick to the very few rules which include not naming surgeons or other medical staff, and that one member felt his life had been ruined and subsequently had no support at all from his (private) surgeon who refused to even see him again. It is important (in my opinion) that we don't post things that could open PCUK to any legal challenges or disrepute.

But it is exciting for us all when there is a new breakthrough and we can chart another member's progress / experience so I will continue to wish you well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Jun 2018 at 13:03

On day 15, I have to report two minor setbacks.


The first is that of the seven keyhole perforations, one has become a problem. When the nurse removed the catheter on day 10, she said all the wounds were healing fine. I enquired about the sutures, and was told: “They’ll dissolve”.


The next day my skin was being pinched where on one keyhole they hadn’t dissolved, and I had to have them removed by the GP nurse two days later. That wound is still sore and slightly weeping. A friend told me “my stitches never dissolve and I always have to have them removed manually”. Perhaps I am the same, due to my dry sense of humour!


The second is that whilst I am completely dry and continent during the day, I have had some leakage at night into the smallest Tena pad, although this morning it was completely dry. Early days I suppose, and apart from the oedema and scabbing on my abdomen, I feel absolutely fine.


P.S. John Thomas is still in hibernation, possibly in mourning for his bosom buddy Tommy the Tumour. Maybe I can tempt him out to play come the summer.

Edited by member 18 Jun 2018 at 16:07  | Reason: Not specified

User
Posted 18 Jun 2018 at 14:53

not a thought I need in my head! 

User
Posted 18 Jun 2018 at 23:31

New technique or not Bollinge, your inners have been through a trauma and will need lots of time to recover


 


sounds good so far tho


 


 


 


 


 

User
Posted 18 Jun 2018 at 23:46

Originally Posted by: Online Community Member


New technique or not Bollinge, your inners have been through a trauma and will need lots of time to recover


sounds good so far though 



Thank you Bill, and my innards seem absolutely fine. I don’t know if this complex “Retzius” is a revolutionary procedure to be adopted universally in years to come - maybe the robot will do all the work in the future - but as far as I am concerned, I am recovered, and even that annoying weeping keyhole has healed today and is no longer a problem.


I look forward to sleeping on my favoured right hand side tonight!

Edited by member 19 Jun 2018 at 05:01  | Reason: Not specified

User
Posted 20 Jun 2018 at 10:41
One week after catheter removal and sixteen days post-op, I am dry day and night.

I am going to be a big brave boy and ditch the pads today. I only bought a box of 14 Tena extra light pads and have three left. Keyhole scars very itchy though.

I think I may be party to a miracle, and it will truly be a miracle if the Big C doesn’t come back.

Cheers, John.
User
Posted 21 Jun 2018 at 12:59
The one painful sutured keyhole wound has become infected because the stitches didn’t dissolve as they should have done. Now on antibiotics. The only setback in the whole procedure. No problem really.
User
Posted 21 Jun 2018 at 14:43
I hope the antibiotics kick in soon - at least you can sleep on your side
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Jun 2018 at 16:15

John


I was initially 99 percent dry 4 days after Catheter removal, I did still wear a pad for some time perhaps because I had been given 120 of them. On occasions it paid dividends, when I bent picking up something off the floor when sat on a office chair or perhaps getting something awkward out of the car or stuck in a traffic jam.


Hope you don't need them and good luck with your recovery.


Thanks Chris


 


 


 

User
Posted 27 Jun 2018 at 06:38
23 days after the operation I am still completely dry, but there has been a surprising development.

Although I only bled for two days after the op into the catheter, over the last week I have been intermittently been peeing red and brown blood with an occasional clot. The nurse says this is normal and is the result of internal stitches dissolving.

I am on my last day of antibiotics for the infected keyhole wound, and I had to go to the nurse again yesterday as two more very fine stitches were poking out of it and they were irritating me. In total, I have had to have nine “dissolvable” stitches removed because they didn’t dissolve!
User
Posted 04 Jul 2018 at 11:10

Hi John


 


I'm having the same procedure at the same location 31st July thanks for the info


 


Cheers


 


Bob

User
Posted 04 Jul 2018 at 11:19

If the Professor is doing your procedure, rest assured you are in the very capable robotic hands of one of the finest surgeons in Europe.


Four weeks on I am absolutely fine, although I have been signed off for five more weeks.


Best of luck!


Cheers, John

Edited by member 05 Jul 2018 at 10:47  | Reason: Not specified

User
Posted 05 Jul 2018 at 10:46
Surprised to have woken up with a damp patch in bed this morning, and it wasn’t a wet dream!

Looks like the last three or four of the box of fourteen Tena light pads I bought three weeks ago may still be put to use........Still, early days.

Cheers, John
User
Posted 06 Jul 2018 at 20:54

It’s very early to expect complete dryness John.


 


your route is different from mine, I went to Leipzig University Hospital to a world renowned Professor (easy to look up)


they had some advanced techniques in the way they re/stitched the bladder as well as a technique called “frozen sections” where they sent tissues off for testing during the operation to ensure clear margins


after the op,  I was T2c with clear margins, completey dry at 7 weeks and fully functionally sexually at 7 months.


all was going great till recurrence nearly 3 years down the line, had radiotherapy recently and on HT for 2 years


 


damn disease......


 


 

User
User
Posted 07 Jul 2018 at 23:41

Exact same hospital and Professor 

User
Posted 10 Jul 2018 at 15:41

First PSA five weeks after my op. Down to <0.1 ug/L, from 18+ ug/L pre-op.


I was told to wait between six and twelve weeks for a follow-up PSA, so hopefully my next test in two or three weeks will be even lower and ‘undetectable’. 🤞


P.S. The hospital have just told me lowest reading possible with their current equipment is <0.1 ug/l which is classed as ‘undetectable’. Good news!

Edited by member 12 Jul 2018 at 12:52  | Reason: Not specified

User
Posted 24 Jul 2018 at 16:01
Not great news today, the post-operative biopsy revealed further spread than the scan, although the Gleason score is still 4+3=7.

I have had to wring the information out of the hospital, as I caught the prostate nurse answering her phone and not on Answerphone (showing my age!). She had been avoiding replying to my emails, as has the Urology department in general. The Professor is still away.

I wonder what the big deal was, I had cancer, thought it had gone, now there’s some left. What’s new? So why the reticence to keep me informed?

Researching salvage treatments right now, but as PSA is undetectable and as I am as well as before the op, it may be some time before I rush into anything else.

Keep calm and carry on!

Cheers, John
User
Posted 24 Jul 2018 at 17:22
Sorry to see that - what do you mean by spread further than the scans? That there was more of it than expected but all contained or there were positive margins or you have mets?

It won’t be salvage RT at this stage; the outcomes for adjuvant treatment are more relevant to you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jul 2018 at 17:24
PS I imagine the reluctance was to give you the results without knowing what the Prof’s advice is going to be. Regardless, you should expect to be referred to an onco.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jul 2018 at 18:03

Hi Matron,


I only got a verbal précis of the pathologist’s report which I didn’t totally take in - not because I was in shock - but because of a poor phone line, (thank you EE), and a paper copy is on its way via snail mail. The NHS doesn’t have PDF or email facilities...apparently.


I am just more and more annoyed by my GP surgery’s neglect of my PSA testing for seven years, and the refusal of a “transient” GP at the practice who declined to do a DRE about three years ago, despite me being on his couch in my underpants for something else. He’s buggered off to the sub-continent now.


Did I mention that Her Loveliness has had two invitations for cervical smear tests in the last two years, despite the fact that her entire womb and its ancillaries were destroyed in a medical incinerator three years ago following her total hysterectomy? I did? Sorry to be a bore.


Many thanks for your concern, and no doubt I will be back to you for RT advice, after which I will feel qualified to pontificate about that as well!


Keep smiling, keep breathing.


Best wishes and kind regards, John

Edited by member 24 Jul 2018 at 18:12  | Reason: Not specified

User
Posted 24 Jul 2018 at 18:06
Sorry to read this a John.
Ian
User
Posted 24 Jul 2018 at 19:20

John


Sorry to hear the news, I had an elevated PSA missed for three years and sometimes start doing the "what if" thoughts. Stay positive, there are still plenty of options if needed.


Thanks Chris

User
Posted 24 Jul 2018 at 20:27

Sorry your news wasn't  better. We still keep thinking about the what  ifs.. Although my husband did have regular PSA Tests because of BPH we still keep wondering whether he should have been referred sooner. No one knows when the cancer first develops. Maybe he would have been 3+3, maybe he would have had his nerves spared, maybe his continence would have been better etc etc.


We've accepted the fact we are where we are and cannot turn the clock back. I expect  lots of men and their partners feel the same.


We are still hopeful for a good outcome  and there seems nothing to indicate you cannot have one albeit perhaps after more treatment.


Best wishes for your forthcoming appointment with the prof and let us know how you get on.


 


Ann

User
Posted 26 Jul 2018 at 14:38
Finally got the histology report. Op. done on 6 June, samples inspected 11 July! Good job it was nothing important.....

Upgraded to T3a, still Gleason 4+3=7. Lymph nodes affected, maybe 1 positive margin (focal). Not sure what that means, but the pathologist seems to have discussed it with a colleague for a second opinion.

Looking forward to seeing the Professor in a few days to thank him for the brilliant job he has done. Not his fault there were seven years between PSA tests. And yes Matron, I am partly to blame because I read on the annual blood test form ‘Full blood count’ assuming that included PSA which evidently it does not. Moreover I had no symptoms, so no reason to suspect prostate disease.

Electron beams here I come (maybe). I wonder if they will let me wear those lead-lined underpants they give you when you have a chest X-ray? 😂😂😂

My first tattoo at 62! All the rage these days I understand.

So many exciting new things to look forward to!
User
Posted 28 Jul 2018 at 06:54
I spoke to the Specialist Oncologist Nurse here in Coventry with a view to arranging another appointment with the Consultant Oncologist whom I saw before my prostatectomy.

He told me whilst my PSA is undetectable, they would not entertain an oncology consultation ‘as we don’t want to fill you with chemicals and radiation and make you more ill than you are now. And anyway you may be cured’.

I thought that rather encouraging. And I am not ill.....except I have cancer. Next PSA in ten days 🤞

Cheers, John
User
Posted 28 Jul 2018 at 09:34

At risk of upsetting Lynn I would insist on a ultrasensetive PSA test, if it comes back as undetectable ie less than 0.001 then you can be reasonably sure you do not need ajuvant  RT.


Of course it may come back as 0.05 and then you have the waiting game or ART  to chose from but at least you will know..

User
Posted 28 Jul 2018 at 11:16
Aaaaaaaagggggghhhh!

What is so difficult to understand? Someone could only get a 0.001 result if the machine at their lab actually measures down to that level. If the machine only goes to 0.03 or 0.05 posts like your will make people panic that they are detectable.

0.05 is only detectable if it has come from a machine that measures lower so a result of 0.05 does not mean a waiting game of any sort.

(You knew I would respond this way and I did not fail you.)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Jul 2018 at 11:16

I mentioned that to the oncology nurse and he said they had tried it but it was not worth the trouble.


We have one of the newest and biggest hospitals in Britain here in Coventry, (PFI financed, probably costing over 1bn in the end). I called the biochemist there, because my first post-op PSA came up on my EMIS Patient Access app as 0.1! She said the result was <0.1, the lowest their equipment can measure.


So then I phoned my GP and they said the result on their system was <0.1. So it seems EMIS Patient Access do not have the “<“ in there compute’s fonts!


I’m more than happy with <0.1 ‘undetectable’. We’ll see how long that lasts.


I liked the bit about the breast-feeding and recently orgasmic women’s PSA - not that I know anything about either!

Edited by member 25 Aug 2018 at 12:59  | Reason: Not specified

User
Posted 28 Jul 2018 at 11:18

Bollinge, I think that is a tish response from the nurse specialist. Important to see what the surgeon actually says at your appointment about the pathology but with lymph involvement I think you should insist on an oncology referral if it is not volunteered.

Edited by member 28 Jul 2018 at 11:19  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Jul 2018 at 11:34

Originally Posted by: Online Community Member


Bollinge, I think that is a tish response from the nurse specialist. Important to see what the surgeon actually says at your appointment about the pathology but with lymph involvement I think you should insist on an oncology referral if it is not volunteered.



Thank you again Matron. I already twigged that, and when I see my GP next week armed with the histology report I will request a referral to Warwick Hospital oncology. The multi-million pound ’super hospital’ here in Coventry is so busy it can take 30-45 minutes just to get in there and find somewhere to park. Warwick, you can just drive in and park right outside oncology for free. I would like to get an appointment booked in the bank which can always be cancelled.


The histology report says: lymph node right 1/6 positive for metastatic carcinoma and left 1/8 positive, together with perineural invasion. Circumferential margin involved but very focally at right posterior. No doubt the Prof will translate all this for me next month.


My GP doesn’t seem to know much about PCa, but he is the one out of many doctors in the practice who ticked the PSA box on my annual blood test form last November after seven years since the first one. God bless him! On my sick note he wrote ‘transurethral prostatectomy‘, which is a TURP.

Edited by member 28 Jul 2018 at 13:27  | Reason: Not specified

User
Posted 28 Jul 2018 at 17:24
Bollinge, rather than change hospitals altogether, why not do as I do for routine appointments at Walsgrave - park at Tesco (free) and enjoy the 20 minute walk to Clinic1? For oncology treatment, of course, parking is free. With nearly 11 years experience of the place and people in it, I have to advise you that oncology there is top drawer. I'd be very surprised if the much smaller unit at Warwick could get anywhere near Wslsgrave's standard of care. There's a saying about nasal surgery and it's effect on the countenance....

AC
User
Posted 28 Jul 2018 at 23:40

Not wanting to bleat on about USPSA but this article sums up why it is valuable in cases like Bolinge:


https://www.google.co.uk/amp/s/prostatecancerinfolink.net/2015/01/14/low-detectable-psa-after-prostatectomy-watch-or-treat/amp/


Re Walsgrave I can remember the old place and not only did I go out with a couple of trainee nurses from there in my younger days the oncology unit was excellent. In fact I wish my dad had had all his treatment there rather than the dump that was the George Elliot down the road! !


 

User
Posted 29 Jul 2018 at 01:12

The retrospective study in the link is already 4 years old and was looking at the PSA scores of men that had the operation between 1993 and 2008. I think science has moved on since 2014 and interestingly, their conclusion seemed to be the opposite of what you are saying? In their report, men with detectable but stable PSA did just as well as those who stayed undetectable. Whether that is <0.1, <0.03 or <0.001 seems irrelevant to their findings. The researchers concluded that it was the unstable PSA with two succesive rises and / or a velocity of 0.05 or more that indicated risk which is not so far from the NICE threshold of 0.2 or three successive rises >0.1 since two successive rises of 0.05 brings the man over the 0.1 point anyway. 


That was what happened in J’s case, as it happens. The post-op PSA was something like 0.04 and dropped to 0.033 before rising to 0.068 and then 0.086 and 0.16 I think. Having the usPSA didn’t make any difference to the timing of the salvage RT; if he had been getting the results to 1dp he still would have been referred at the point when it reached 0.16 :-/


I guess usPSA is useful for men who like the extra worry; but it must be acknowledged that machine noise / tolerance range means that tiny fluctuations are not a cause for panic. It is the trend over a year or more that matters.

Edited by member 29 Jul 2018 at 01:21  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jul 2018 at 01:15
Made me laugh though - as far as I know, the George Eliot is a pub!!!!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jul 2018 at 01:27

Originally Posted by: Online Community Member


I mentioned that to the oncology nurse and he said they had tried it but it was not worth the trouble.


We have one of the newest and biggest hospitals in Britain here in Coventry, (PFI financed, probably costing over 1bn in the end). I called the biochemist there, because my first post-op PSA came up on my EMIS Patient Access app as 0.1! She said the result was


So then I phoned my GP and they said the result on their system was


I’m more than happy with <0.1 ‘undetectable’. We’ll see how long that lasts.


I liked the bit about the breast-feeding and recently orgasmic women’s PSA - not that I know anything about either!



 


MODERATORS - Something weird is going on. Part of Bollinge’s post has disappeared (his results of <0.1 and the biochemist and GP‘s explanations were there and now they are gone) and the middle section of my most recent post disappeared after posting. Gremlins? 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jul 2018 at 11:35

Lynn


I guess my point is that if it's undetectable you don't know if it's stable or not. UPSA makes it detectable and hence can provide reassurance or evidence for further action later on..


If you find that beneficial or not depends on whether you like to have a plan or if you are happy to deal with stuff when it arises. 


There have been a few cases on here where guys have taken action based on staging AND UPSA and I suspect having the knowledge that they were not "undetectable" helped their decision.


If you are ever in Nuneaton I could meet you for a drink at the George Elliot 😊 They have a pub and a hospital with that name.. Like most NHS hospitals the GE can be excellent or crap (I have seen both over the last 20 years)  I am sure everyone there is working to reduce the examples of the later! 


 


I promise not to mention UPSA ever again!!

User
Posted 29 Jul 2018 at 11:53

Originally Posted by: Online Community Member


Lynn


I guess my point is that if it's undetectable you don't know if it's stable or not. UPSA makes it detectable and hence can provide reassurance or evidence for further action later on.



Where can I get UPSA blood tests done round here (Coventry/Brum)?


 


Cheers, John

User
Posted 29 Jul 2018 at 12:10

Francij1, please keep mentioning ultra sensitive testing.  It's an interesting topic and things change. 


Last time it was discussed I concluded <0.03 was a good compromise between reducing errors and providing a realistic starting point to determine velocity as early as sensible.  My hospital does <0.05 and my GP like others has a system that doesn't use the < sign which worried me the only time I had a test there.

User
Posted 29 Jul 2018 at 13:30

Originally Posted by: Online Community Member


Lynn


I guess my point is that if it's undetectable you don't know if it's stable or not. UPSA makes it detectable and hence can provide reassurance or evidence for further action later on.


If you find that beneficial or not depends on whether you like to have a plan or if you are happy to deal with stuff when it arises. 


There have been a few cases on here where guys have taken action based on staging AND UPSA and I suspect having the knowledge that they were not "undetectable" helped their decision.


{removed}


I promise not to mention UPSA ever again!!



 


Keep mentioning it - it is an interesting discussion - but it would be better if you could be factual rather than evangelical. The point is that the science is now clearly demonstrating that it is unreliable so some men have been caused undue distress and may have had unnecessary salvage or adjuvant treatment based on flawed results. It isn't the case that some hospitals are behind the times and not providing usPSA; in fact, what we are seeing is cancer centres of excellence withdrawing from usPSA testing. What concerns me more is that people read comments on sites like this, believe that their 0.05 result is a cause for concern rather than celebration and then become angry / frustrated when their urologist / oncologist explains they are undetectable and do not need further intervention. 


 


It is the same with LRP - there was a ground-swell of opinion that it was somehow going to be the gold standard for prostatectomy. Data has now shown that the outcomes are slightly worse than with open RP but slightly cheaper for the hospitals that already have the machinery in place and have already invested large sums of money in ensuring surgeons are trained to use it. The data is clear enough that hospitals who do not have the Da Vinci will not be investing in it in the future but still we have the evangelists who wish to ignore the facts and continue to tell everyone that LRP is 'best'. It isn't ... it is just more cost effective for the NHS and convenient for men who don't like the idea of being in hospital for a few extra days.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jul 2018 at 16:06

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Lynn


I guess my point is that if it's undetectable you don't know if it's stable or not. UPSA makes it detectable and hence can provide reassurance or evidence for further action later on.



Where can I get UPSA blood tests done round here (Coventry/Brum)?


 


Cheers, John



New Cross Hospital in Wolverhampton still do them. 

User
Posted 29 Jul 2018 at 16:51

Selecting lab equipment can't be that straightforward.  There are people such as Ulsterman who had early treatment after a sensitive PSA test.  Those hospitals buying equipment that only measures to 0.1 would be less capable of helping him.  Also you don't know what new thinking might emerge so you'd think hospitals would play safe and buy equipment that measures a lot lower, although I'd think it costs a lot more.  I'm happy with the 0.05 at Preston and was initially happy with 0.06 at Blackpool.  I was told by one doctor that testing to lower is better.


I've read things about velocity and time of first rise and to me they're reasons to want a lower PSA reading. Although I guess it would be possible to put up with not knowing as nothing will be done for most cases, and might actually be better not to know.  So I'm not full on with this but haven't been convinced 0.1 is good enough.


On LRP, I was offered Robotic and wanted it but it was at a more distant hospital, Blackburn, and thought the possible difference in outcome was insufficient.   The thought of being in hospital an extra 6 days for an open operation is very unattractive and there is more risk, especially to older men.  I was up and ready to go the day after the op and found it a total nightmare being in hospital for the 24hrs I was feeling alright.

User
Posted 29 Jul 2018 at 18:19
It isn't necessarily the equipment that's different - it is the level at which they are prepared to report it. Our hospital (a centre of excellence) has the equipment to test to 3dp (we had the results to 3dp for years) - it is that they have decided to stop testing down to that point. Spire, where J pays to see the uro, has also stopped providing results to 3dp. At first it was a worry, but you soon get used to seeing a score to 1dp with a little < next to it and feeling relieved. There may still be hospitals with old equipment that is only capable of testing to 1dp but I can't imagine it since usPSA has been around for about 20 years and my assumption is that the lab equipment would become obsolete far sooner but I will ask my pathologist friend.

In fact, LRP is more risky for older men than open is, since there is more pressure on the heart and a longer time under GA. The amount of time in hospital and longer recovery period does seem to be a persuasive factor for many.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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