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Retzius-Sparing Laparoscopic Radical Prostatectomy

User
Posted 29 Jul 2018 at 18:52

I was happy with my ‘undetectable’ reading, and long may they continue - I’m not holding my breath! But it would be nice to know the ‘true” reading, so as to observe any increase, if it is not a too great a demand on the NHS.

I’m not a fan of hospitals, least of all Wal’s Grave, the Super-Hospital in Coventry, where there a lot of sick people (and the clue is in the name) Auld Codger, but I hope to get referred simultaneously back there and to Warwick as well, so I can have a second opinion right away. They say the optimum time for an encounter with a ray-gun is seven months after surgery.

I noted your ‘tish’ comment, Matron, and although I consider myself fluent in English I had to look it up - it means something to do with a Jewish repast on the Sabbath! Fortunately the on-line dictionary I used also had an anagram facility which lead me to your true meaning. I also cracked Codger’s cryptic clue about cutting off my nose to spite my face. Perhaps I ought to start doing the Telegraph crossword, so as to understand future posts here.

Open surgery? For me it’s an open and shut no-no where there are minimally invasive alternatives.

Cheers, John

Edited by member 29 Jul 2018 at 18:53  | Reason: Not specified

User
Posted 29 Jul 2018 at 23:21

Had my hospitial only done PSA testing to one decimal point I would have had 26 months of undetectable readings only then to be told my PSA was on the rise. That would have been like going through the initial diagnosis all over again. Following RT,  I again would be having undetectable PSA tests. Next PSA is tomorrow, so like way points on a map I will know what route i am taking.

My oncologist, who some of you know sees the fluctuations of a patient's PSA as a more of a problem, that of course assumes the fluctuation is the amount of PSA in the blood and not the machine.

 Thanks Chris

User
Posted 30 Jul 2018 at 00:47
Re PSA tedting can vouch from personal experience that the same machines are used. I had the op on the NHS but because I now live in Wales they would fund he op but not the follow up so I paid privately so I could have some consistency in the follow up. The Nuffield hospital I attend used to do a great service where you would turn up, have the test then see the consultant for the result all to 3dp's.

Unfortunately 6 months ago I went in for the result and the consultant said "Less than 0.1 but detectable". Well I needless to say I was pretty Pissed and so it turned out was he! He immediately went and saw the lab person and was able to wring a score out of him of 0.026 but was told they could no longer quote numbers below 0.1 because they were no longer certified even though the machines etc had not changed! To be certain the doc sent the same blood to a clinic in London and it came back 0.03 - arrgggh the same value I had just read was being considered as a candidate for biochemical recurrence!!! So six months later and back at New Cross where they still test to 0.001 I get a value of 0.023.

So Lynn is correct I should probably have taken the 0.1 route from day 1 with a G3+3 T3A that was very focal and had "just skimmed" the capsule. This would have saved me all this PSA anxiety BUT you know what I am glad I do USPSA because knowledge is power - you just have to remember it's probably only he 2nd decimal place you can rely on!!

For higher Gleaston and even more extensive spread after RP I think USPSA is essential especially if you are hoping to avoid the "ray gun"

Whoops you did say I could keep talking about it!!

User
Posted 30 Jul 2018 at 01:23

http://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-foot-in-mouth.gifhttp://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-foot-in-mouth.gif

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

User
Posted 30 Jul 2018 at 01:38
John once had two samples taken on the same day and sent to different labs (one at the GP practice and the other at the hospital about an hour later) - the results came back as 0.068 and 0.10 but that was in 2011 and the GP sample was tested at Harrogate infirmary (apparently they were slightly cheaper than Leeds). When we queried it with the uro he said that everyone knew the Harrogate lab results come out higher than everywhere else and it was taken into account when accepting referrals from N Yorks men.

Then in 2015, dad had one sample split and tested twice at the same lab; the results were 0.30 and 0.32 which the uro said was a perfect example of machine noise / tolerance.

What can we do, faced with that kind of imprecision?

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

User
Posted 30 Jul 2018 at 01:42

Originally Posted by: Online Community Member

I noted your ‘tish’ comment and although I consider myself fluent in English I had to look it up 

Sorry - that isn't always clear to new members - it was a strategy introduced by Countryboy to stop the automated moderator removing bad words. Very useful sometimes. 

Other examples include kcuf / loblocks / tiwt / tishty 

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

User
Posted 30 Jul 2018 at 01:45

Originally Posted by: Online Community Member

Other examples include / tiwt /

/ WTF /?

User
Posted 08 Aug 2018 at 12:10

I had my post-operative consultation with the esteemed Professor at the Royal Surrey County Hospital yesterday. He basically didn’t tell me anything I didn’t know, as I already had a copy of the histology report.

I mainly wanted to thank him for the brilliant surgery he carried out, and to tell him not to blame himself for the seven year gap in PSA tests leading to metastatic spread to my pelvic lymph nodes. That would be down to my GP.

Matron will admonish me for not being more proactive about my PSA testing, but naïve little me, when I dutifully trotted off to phlebotomy with my annual blood test form bearing the legend ‘FBC’ = Full Blood Count, every year for six years, I presumed that included a PSA test! How stupid can one get? It’s the National Health Service, not the Self-Help Health Service!

I must reiterate that since my raised PSA last November, and through the catalogue of tests, scans and ops, the NHS have been wonderful.

Good news anyway, both my post-operative PSA’s have been undetectable, <0.1, so nothing doing for the time being. I am as well as I was last year before diagnosis - I had no symptoms - apart from the little matter of very little matter left down below now......☹️

Of note: the Prof. said he's not a great fan of super-sensitive PSA assays, as they can be affected by ‘noise’ which can be a distraction.

I have been referred back to oncology, where in my newly acquired spirit of ‘self-help’, I will ask nicely for a Gallium PET-CT scan.

I asked the Prof. where in the world he would go if he ever required prostate surgery, Professor Bocciardi in Milan maybe, Professor Rha in Seoul?

He answered: Professor Haese at the Martini Klinik in Hamburg, who interestingly, don’t seem to mention Retzius-sparing surgery on their website.

https:www.martini-klinik.de/en/for-patients/

Edited by member 08 Aug 2018 at 12:23  | Reason: Not specified

User
Posted 08 Aug 2018 at 13:03

Well as you might expect I am happy to disagree with the professor on the value of super sensitive testing especially in your case.
A supersensitive test now will provide you with a significant baseline and could mean further treatment is unnecessary.

So let's say you have the super sensitive test and it comes back as less than 0.001. That would be a pretty significant indication that your RP got everything including the lymph spread. This is backed up by clinical research that says anything less than 0.003 can be pretty certain there is full remission:
https://www.hopkinsmedicine.org/brady-urology-institute/specialties/conditions-and-treatments/prostate-cancer/prostate-cancer-questions/psa-how-low-should-it-go

Even if it comes back as 0.02 or something else less than 0.1 and you take the option of ajuvant RT how will you know in 18 months time if the RT has had any impact? Without a super sensitive test you will be in the dark.

Now being in the dark may be your preference but as you have found previously being in the dark is only beneficial until someone or something turns the light on!!

Edited by member 08 Aug 2018 at 14:02  | Reason: Not specified

User
Posted 08 Aug 2018 at 13:32

Originally Posted by: Online Community Member

Matron will admonish me for not being more proactive about my PSA testing, but naïve little me, when I dutifully trotted off to phlebotomy with my annual blood test form bearing the legend ‘FBC’ = Full Blood Count, every year for six years, I presumed that included a PSA test! 

 

You have said that a few times and it is undeserved - one of the things I feel most strongly about is the GMC's reluctance to take action against GPs who fail to follow NICE guidance in relation to PSA testing, cancer referral pathways and particularly, the 'Prostate Cancer diagnosis & management' and 'suspected cancer: recognition and referral' protocols. I have written to MPs, signed petitions, etc on exactly that point. 

If my mum hadn't had a dreadful GP, she might not have died at the age of 60. If the same GP had been more on the ball rather than an egomaniac more interested in his budget, my dad would have been diagnosed before his emergency admittance to A&E with acute retention and my recently dead step-mother might have been diagnosed with terminal lymphoma slightly earlier than 6 days before she died. We have thousands of great GPs (like mine) but the terrible ones should be struck off.

 

Franci, unless you have years and years of medical training & research behind you, I think you might eventually have to accept that the experts know more than you :-/ 

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

User
Posted 08 Aug 2018 at 14:01

 

Franci, unless you have years and years of medical training & research behind you, I think you might eventually have to accept that the experts know more than you :-/ 

 

Mm that's why I always try and incudes current research or statements from leading institutions in my comments.

Your own quote is interesting re GP'S  consultants can be be just as crap, the medical world is full of ego maniacs !

User
Posted 08 Aug 2018 at 14:04

Matron, when I say “my GP” I refer to an ever-changing group of transient and part-time doctors who man “the biggest surgery in Coventry”, open just four and a half days a week. It is rare to see the same one twice, not that until recently I visited the surgery very often!

Appointments have to be booked by phone on the day, and any non-urgent appointments have gone by 8.40. On-line appointments are available occasionally, often three weeks hence.

I need to be grateful to the one GP who ticked the PSA box on the phlebotomy form last November for the first time in seven years, but I am still annoyed by the GP who dismissed my request for him to carry out a DRE whilst on his couch in my underpants for something else with the words that still ring in my ears: “We don’t do that these days”. He has retreated back to the sub-continent and beyond the reach of the BMA’s complaints procedure.

I think in reply to my first ever post you suggested I might ‘have an attitude’, and that is why.

I am completely chilled about having cancer, probably because there is nothing wrong with me......😉

Cheers, John

Edited by member 09 Aug 2018 at 15:46  | Reason: Not specified

User
Posted 16 Aug 2018 at 16:20

I have my surgery on the 3rd September, reading this gave me something to laugh at, so thank you for that!

User
Posted 19 Aug 2018 at 18:16

Dear Blighty

I had robot prostatectomy on the 16th August and feel fine. Make sure you take plenty of laxatives as bloating/constipation were the worst problems in the first few days. I have just delivered twin aubergines and am much more comfortable!

Hope all goes well.

Pitchpole

User
Posted 20 Aug 2018 at 16:23
Blighty,

Best wishes for the 3rd.

As for Pitchpole's advice, I second the motion......

The condition of your lower bowels has a big effect on comfort levels and empty or nearly empty is the preferred state!

Nick

User
Posted 06 Sep 2018 at 08:14
September 2018: 3rd post-operative PSA test, at twelve weeks. PSA still “undetectable”. Am I “cured”? Although I am an extreme optimist, I’m not holding my breath.
User
Posted 06 Sep 2018 at 09:11

HI Bollinge 

Good news with the PSA and long may it continue.

Personally I just take each result as it comes and don't concern myself with anything more. To quote the good book 'Sufficient unto the day is the evil thereof'.

Kevan 

Edited by member 06 Sep 2018 at 09:12  | Reason: Not specified

User
Posted 06 Sep 2018 at 14:42
Congratulations - breathe easy for a few weeks again
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Sep 2018 at 15:28

Thank you Matron. My breathing has not been interrupted at all by the whole scenario from start to finish!

I have just left the Indian Oncologist who tells me I am cured! I am to have three-monthly PSA tests and that’s it. His ray-gun is staying in its holster - for now.........

So my breathing will still be uninterrupted, as I am not holding my breath.

Interestingly, he had the same Nomogram on his computer as I had on this here iPad. The prognosis was not as good as for the postulated organ-confined disease, but still breathing 96% fifteen years later excluding other nasties. He didn’t seem to know much about Gallium 88 scans, and said the inferior Choline scans have to be done in Birmingham. He was surprised when I told him you can get a Choline scan in India for £480: “I am Indian and I didn’t know that!”

I was a bit disappointed when I asked him what resolution my original mpMRI scan was which suggested Tommy the Tumour was organ-confined, and he said he didn’t know. “I am an oncologist and I rely on the radiologist to deal with things like that.” If it was my job I would make damn sure I knew something simple like that.

When I asked the ‘Specialist Prostate Nurse’ a few weeks ago what would happen to my continuing sperm production after my prostatectomy, she didn’t know. Maybe I am weeing tadpoles!

So although I am an eternal optimist, and am cured, I did say to Dr K**n: “I’m sure we’ll meet again, don’t know where, don’t know when” but most likely in the oncology clinic at Walsgrave Hospital!

Keep calm and carry on. Keep breathing.

Cheers, John

Edited by member 06 Sep 2018 at 17:03  | Reason: Not specified

User
Posted 06 Sep 2018 at 16:40
Bollinge,

John, I knew we frequented the same hospital but it seems it will be left to me to complete the education of our oncologist, young Y****b. By the time you see him again, which I hope is very many years hence, he'll be older and wiser. He isn't yet a patch on his predecessor, who is enjoying ocean yachting in his retirement, which was well earned. He helped me with at times unorthodox treatment ideas that I threw at him over the eight years in which we had regular consultations. The young chap I have now does not yet have the self confidence to lock the NICE handbook in his desk drawer, when faced with an awkward auld codger like me and a track record that defies all expectations!

AC

User
Posted 06 Sep 2018 at 16:53
Sometimes you try really hard to be unpleasant, don't you?

Having spent years becoming an oncologist, why would you expect him to learn the other team members' trades as well? He probably has a lot on his plate and less time for armchair medical training. Or since Galium 88 hasn't yet been invented, he didn't realise that you meant 68?

Not sure whether your query about sperm is a ssip-take or you are really naive? You had a vasectomy; your sperm now stays firmly in the epididymis from where it is simply re-absorbed into your body.

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

User
Posted 06 Sep 2018 at 17:19
I was not being unpleasant at all.

If I was a Consultant Oncologist I would expect to know the resolution of the MRI images I would be relying on so that I knew exactly where to point my ray-gun if and when required. I would also expect to be au fait with the latest scanning techniques, as this is a rapidly advancing field of medicine.

If I was a specialist nurse, I would expect to be able to answer a simple question like the one I posed.

The good doctor and I parted on perfectly good terms, I was seen on time, and I am cured. What’s not to like?

Cheers, John.

P.S. Matron, if we are being really pedantic, there are two ‘l’s in Gallium, whether 88, 68, 69 or whatever.

User
Posted 07 Sep 2018 at 10:45
Moderators why have you removed my post but not removed Bollinge’s racist narrative?

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

User
Posted 07 Sep 2018 at 15:35

Originally Posted by: Online Community Member
Moderators why have you removed my post but not removed Bollinge’s racist narrative?

Matron, what in the world is racist about stating where a Consultant hails from? The NHS would collapse without foreign doctors and nurses.

When I phoned up the hospital to speak to Dr K**n’s secretary, the operator said “Which Dr K**n do you mean? We have seven here!”

Calm down dear!

Cheers, John.

User
Posted 07 Sep 2018 at 15:59
You continually push the boundaries of acceptable behaviour. You never refer to your consultant surgeon as the 'White UK professor' or mention the white nurse or the Scottish GP or whatever - you only ever refer to people's ethnicity when they are from a minority group. Earlier in this thread, you refer to a GP 'going back to the sub-continent' which I take not to be a reference to Wales.

You also love to break the rules on naming medical practitioners - it is ridiculous to name the hospital, name the discipline and the ethnicity of the oncologist and then simply omit 2 letters from his 4-letter name.

Sir, you are a racist. The moderator who decided to remove my previous post simply because I said you were racist is either naive or has failed to recognise the underlying tone of your language. PCUK will probably ban me for a while but I cannot in conscience leave your odious posts unchallenged.

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

User
Posted 07 Sep 2018 at 16:05

I believe you hail from Yorkshire but I don’t hold that against you. “My” Professor is slightly tanned, but I have never had an affable conversation long enough to discuss his ethnicity with him. He’s too busy curing people.

I have been to 105 countries and have loved them all and their inhabitants.......

Edited by member 07 Sep 2018 at 18:41  | Reason: Not specified

User
Posted 08 Sep 2018 at 09:41
Why seek offence where none is intended? Far too much of that in this world.

Glad to hear that the news is good John and hope it continues for you.

Nick

User
Posted 25 Sep 2018 at 14:42

It’s fifteen weeks today since my prostatectomy, and I am as well as I have ever been, except for these little difficulties:

I have a slight dribble after each micturition, which is absorbed by my underpants and doesn’t show on my trousers, no pads required. I had an unexpected nocturnal emission (not of the kind enjoyed by teenage boys) about two weeks ago, but probably due to excess fluid consumption.

I have ended up with a micro-penis - and we have not had cold weather yet - which shows no sign of life other than as a flue for urine, daily Cialis has no effect. Going for the pump-action option!

PSA still undectable, but now seeking a second oncology opinion that may differ from the first one who told me “You are cured”, despite two lymph nodes being cancerous.

Anyway, no regrets, other than the seven year gap between PSA tests from 2010 till 2017. Did I mention that before? Sorry to be a bore. I’m not bitter!

Cheers, John.

Edited by member 25 Sep 2018 at 15:51  | Reason: Not specified

User
Posted 26 Sep 2018 at 08:03
Go for it! The pump action was what woke mine up!! Certainly wasn't getting any other action as my wife pissed off 6 months after my op. I suspect I have bored this forum with that topic before too! All good now though in all depts!!
User
Posted 26 Sep 2018 at 08:33

Her Loveliness, (my fiancée of 39 years) seems quite pleased, as she lost her libido three years ago after a total hysterectomy 😉

User
Posted 29 Sep 2018 at 16:05

Fabulous story elegantly written, love your turn of phrase. 

So I am due for the op at the royal Surrey 11 Nov.  Time to get my head straight.  Would be interested to find out who 'did' you.  Maybe I'll message you off line for that. 

Have to say I have not yet thought about what comes next but your story gives me hope, so thank you.

User
Posted 29 Sep 2018 at 16:29

It was the top man at that hospital, and in my estimation one of the top urology Professors in the world, although I have only had experience of one!

It was not his fault that there was a seven-year gap between my normal PSA in 2010 and raised PSA last November that has lead to lymph node involvement. That would be down to my GP(s), and as Matron correctly points out, my lethargy and ignorance.

I could have paid around 25 grand to have everything done privately, but I had it all done on the NHS who have been brilliant throughout once I was diagnosed. I have now been referred on the NHS to the top oncologist at the Royal Marsden for a second opinion about the lymph spread, but for now, with undetectable PSA, I am enjoying being cured.

Sure, message me anytime. I am in touch with several of Professor X and his sidekick Da Vinci’s patients, past, current and potential.

Cheers, John.

User
Posted 04 Oct 2018 at 15:17

Now that I am ‘cured’ following my prostatectomy four months ago, in an idle moment I thought I would re-visit the Memorial Sloan Kettering Nomogram calculator prognostication tool, as used by my oncologist.

I input all my case details, and the algorithm says:

At 4 months post-op, there is a 39% chance of non-recurrence within two years, and only a 10% chance of non-recurrence after 10 years.

If I input the same info, but 12 months post-op, the odds rise dramatically to 63% and 16% respectively! So Tommy the Tumour or his offspring are likely to return at some point, just as I thought.

How strange that no-one has mentioned this to me, as it seems PSA testing in the first year after RP is crucial, as to whether or not to commence adjuvant treatment. I have a stack of PSA forms and I’m going to have a test every two months till next June.

On a more positive note, both sets of data say I have a 96% chance of not being killed by prostate cancer within the next 15 years!

Cheers, John.

Edited by member 04 Oct 2018 at 16:14  | Reason: Not specified

User
Posted 22 Oct 2018 at 22:22

Hi John.

Thanks for all the feedback on your Retzius Sparing experience. How are you doing now, some four months post-op? Having just been diagnosed and recommended for RALP, I am starting down the road of reading and studying.

Best regards,

Carl

User
Posted 23 Oct 2018 at 02:31
Hi Carl,

Thank you for asking. I have never felt so well, yet I had no symptoms before my operation anyway.

The operation went totally smoothly, with next to no pain, and continence good more or less from the time of catheter removal on day 10.

My three post-operative PSA tests have been undetectable.

Professor Whocannotbenamed is clearly a brilliant surgeon and one of the best in the world, which is why I went to him. There are so many ‘what ifs’ with this disease, like what if I hadn’t had a seven-year gap between PSA tests, what if my GP hadn’t ticked the PSA box on the phlebotomy form this year and only did so next year or the year after or never, what if the cancer comes back, what if i have adjuvant radiotherapy?

At least I will never be asking ‘What if I had had a different surgeon?’.

The only downside is complete erectile dysfunction, despite the Retzius and partial nerve-sparing procedure and daily 5mg Cialis. I can still have a ‘dry’ orgasm, but not as intense as before. And between the Professor and his sidekick, Da Vinci, they seem to have misplaced around 2” from what was not a massive member in the first place. They say it can take 1-2 years for erectile nerves to recover, so I am looking forward to rampant sex sometime around 2020!

Always happy to answer any and all of your questions.

Cheers, John.

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

 
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