Retzius-Sparing Laparoscopic Radical Prostatectomy

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