Retzius-Sparing Laparoscopic Radical Prostatectomy

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

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 p****d 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!!

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?

/ WTF /?

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 moderator 12 Jul 2023 at 09:29  | Reason: Not specified

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 !

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

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

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

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.

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.

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

Nick

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.

G 

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

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.

Fourth post-operative PSA result today, once again <0.1, so-called “undetectable”😁

Had an interesting chat this morning with the pre-eminent prostate cancer oncologist at the Royal Marsden Hospital in London, and he is an advocate of super-sensitive assay of PSA, particularly in my case, where there was lymph node involvement.

That is contrary to the views of my surgeon and my local oncologist. He helpfully arranged a PSA test there and then, where they test down to 0.04. The idea is to see if there are consecutive rises which would indicate something going on. So now I have to find somewhere near me where they have super-sensitive testing available. Our local billion-pound super hospital in Coventry evidently does not!

He counselled against adjuvant radiotherapy, and basically to avoid all RT as long as possible, which could be years away even if I do have biochemical recurrence. He said that Space Oar, which our Matron mentioned a while ago, is only used for men undergoing RT who still have a prostate. He reiterated, as I was advised by two friends, that the TRUS biopsy is a waste of time unless it picks up on a bloody big tumour, and often subsequently leads to a template biopsy, with more discomfort and stress and cost to the NHS.

So, I have been operated on by the best surgeon and consulted with the best oncologist (according to a survey of a cohort of one), all on the NHS, God bless it.

And best of all I no longer have cancer!🤞

Cheers, John.

Edited by member 30 Oct 2018 at 15:40  | Reason: Not specified

Hello John
I'm pretty sure the labs at UHCW can test down to 2 or 3 decimal places, it's just the policy decision of the Uro team was simply to report only to one DP. It isn't the ability to test at 2 or 3 DP, it's the value of so doing for everyone they challenged.

In your case, and with a specific request to back you up, I would think you simply pitch up as normal.

Edited by member 01 Nov 2018 at 14:20  | Reason: Not specified

Hello John

Ah Ok. Thanks.

I assumed as I did because I have a friend who recently went Private via Meriden bit @ UHCW, and he is definitely monitored to 2 DP. Maybe it's done elsewhere? Or perhaps a clinical reason he didn't share. 

No matter: point is you're ahead of me on the topic and had already tried.

Wishing you the very best of luck. I'll be interested to see the effect/advantage of looking at 2 or 3DP, as my philosophy has hitherto been to try to isolate & ignore the noise below 0.1.  I know not everyone agrees.

So once again, happy days. The very senior consultant at the Royal Marsden states that should I experience recurrence, salvage radiotherapy is one option, or wait and have a PSMA PET scan to determine the location of any metastases, before any kind of therapy. He also points out that ‘At present PET PSMA scans are not widely available’.

I find it slightly ironic that a recent visitor to this forum from India whose father is faced with castration as the family cannot afford hormone therapy, was able to somehow have a PSMA scan there, which I understand costs only around four or five hundred quid.

I have been quoted £2600 for something similar privately at one of the handful of PSMA scanning centres here in England.

The two oncologists I have seen both complemented me on my knowledge of PCa and my own personal condition, which is due in large part to all you lot here. So many, many thanks to you all!

Cheers, John