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Recurrence After RP

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User
Posted 26 Mar 2018 at 08:08
I have just re-read the pathology result after my biopsy. It states: “63% 5-year biochemical recurrence free progression probabilities for radical prostatectomy”

I presume that means there is a 37% chance OF recurrence within 5 years. Anyone know how these percentages are calculated?

User
Posted 14 Apr 2018 at 23:47

Rather than clog up someone else’s thread it seems more polite to respond to you here.

I don’t see this as my personal fiefdom at all but I do feel very protective of the more anxious or distressed members on here (that you don’t know and seem to have no respect for) and I have been around long enough to see others like you. You have had cancer for 5 minutes and suddenly think you are an expert, giving poor advice to others based on what two mates told you. I should just ignore you as most of the other regular posters do, but it worries me that even newer members than you will join, read your ‘advice’ and believe that you know what you are talking about. Your friend with the Coutts account has you sussed, perhaps - or has already been diagnosed but doesn’t particularly want it discussed.

Your maxim is a sensible one but you haven’t really stuck to it. We should just try to stay out of each other’s way but if you tell a new member incorrect info, I will continue to correct it unless the moderators tell me not to.

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

User
Posted 15 Apr 2018 at 20:02

Is "9 Thanks" a record on this website, in just 18 hours too.

"11 Thanks" now. And still rising !

Edited by member 21 Apr 2018 at 17:48  | Reason: Not specified

User
Posted 26 Mar 2018 at 10:58

Tables are used such as Partin and a nomogram to predict probable biological failure, as here after surgery http://urology.jhu.edu/prostate/hanTables.php

Barry
User
Posted 26 Mar 2018 at 22:21

 

Is there an option to back it each way?

Well, I suppose that would equate to salvage RT.

 

Barry
User
Posted 28 Mar 2018 at 01:31

I think our member Capitalman was one of the men Lyn may have had in mind. He has not posted for a long time but when last he did he had been urinary incontinent for 4 years and counting. I believe he had a top surgeon too but they also have bad results. Of course ,overall better results should be had from an experienced and highly regarded surgeon than from a less experienced one.

So it has to be understood that sometimes results are poor. This thread is quite interesting :- https://community.prostatecanceruk.org/posts/t7691-Continence#post107637

Barry
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User
Posted 26 Mar 2018 at 10:58

Tables are used such as Partin and a nomogram to predict probable biological failure, as here after surgery http://urology.jhu.edu/prostate/hanTables.php

Barry
User
Posted 26 Mar 2018 at 11:10

Thank you Barry, I have found these nomogram calculators on the web. They say I might have 15 years.....

Of course they don’t take account of the skill and experience of the surgeon and the dexterity of his sidekick da Vinci carrying out the RP do they?

User
Posted 26 Mar 2018 at 11:26

These tables (Han/Partin) won't let me put in stage T3b. Do they not extend to the very high risk stages?

User
Posted 26 Mar 2018 at 11:41

Here’s another one but they say it doesn’t work if you’ve had hormone or radiotherapy.

There must be one somewhere specifically for that.

https://www.mskcc.org/nomograms/prostate/post_op

User
Posted 26 Mar 2018 at 11:49

Are there any tables that show any results after surgery & other treatment (example radiotherapy) right after surgery?

User
Posted 26 Mar 2018 at 16:45

It seems the letter is telling you what your specialist is predicting for you, based on your stats. This probably explains why the surgeon suggested that your nerves could not be saved. I think they would be unlikely to put generic stats in an individual letter.

The MSK nomograms are used as a baseline but most UK hospitals then add a bias for their own local outcomes - generally, men in the UK do not do as we'll as the MSK predicts - there are also geographic variations (men in the North and North East have worse outcomes than men in Surrey, for example).

When John was diagnosed we got a letter saying he had a 55% chance of biochemical recurrence. Since he was 50 with a PSA of 3.1 and a T1 pussycat we assumed it was a typo but the surgeon confirmed that the nomogram output was 55%. It turned out to be spot on since he needed SRT 2 years later.

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

User
Posted 26 Mar 2018 at 17:26

Thank you once again Matron.

At least I am not going with my first consultant, Mr Morbid with the bleak outlook, whose outcome results seem unvailable on the web, and I will be instead dealt with by a world-renowned surgeon on the NHS, whenever his waiting list permits.

I told him last week, forget any “sparing” niceties, rip out whatever you think once you get in there.

“John sparing” is the priority at whatever cost. We will never surrender!

And post-RP I will take whatever comes (probably not me anymore😂😂😂😂😂), but that’s life!

Kind regards, John.

Edited by member 26 Mar 2018 at 17:27  | Reason: Not specified

User
Posted 26 Mar 2018 at 18:47

Well let's hope that your 'world renowned surgeon' is not the same man that has left a number of members here with life changing problems that he then refuses to acknowledge or deal with. Do remember that the really big personalities have companies running their websites and marketing machines for them. I am sure a couple of the men will message you privately to tell you the name of the 'world renowned' rogue.

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

User
Posted 26 Mar 2018 at 19:19
Hi

Edited by member 27 Mar 2018 at 13:39  | Reason: Not specified

User
Posted 26 Mar 2018 at 19:47
Originally Posted by: Online Community Member
I have just re-read the pathology result after my biopsy. It states: “63% 5-year biochemical recurrence free progression probabilities for radical prostatectomy”

I presume that means there is a 37% chance OF recurrence within 5 years. Anyone know how these percentages are calculated?

John. You will know your chance of recurrence % better once you get your final pathology results on the whole prostate, seminal vesicles etc. I would focus on that and not on your pre op stats. Do remember stats are only that. My husband on Gleason 3+4, PSA 9.2 T2a pre op only had a 48% chance of the cancer being contained but thankfully it was. We do not know of course whether it will stay away for the rest of his life and no medic however amazing can ever tell you that.

Good luck with your op.

Regards

Ann

User
Posted 26 Mar 2018 at 20:35

Thank you Matron and other contributors.

I have looked into this op with some scrutiny. Your “mystery man” with 3000 prostatectomies under his belt is bound to have had some failures, and to me is preferable to Mr Morbid with no outcomes available on-line.

If you check our fellow contributor Rafael’s posts, you will see his condition one month on - post RP. He is impressed.

I am still totally chilled about the whole thing, being asymptomatic, with a certain outlook on life which may differ from other peoples’.

I have backed a horse and hope it’s a winner. And I hope my choice of surgeon is better than my preferences for racehorses!

Is there an option to back it each way?

User
Posted 26 Mar 2018 at 22:21

 

Is there an option to back it each way?

Well, I suppose that would equate to salvage RT.

 

Barry
User
Posted 26 Mar 2018 at 22:26
It could always be like the Grand National and you fall at the first fence.( Or win)

😀

User
Posted 26 Mar 2018 at 22:44

MSK nomograms won't give me a score if I tick the "lymph node" box. I have "suspected" lymph node involvement. If I don't put that in my survival rate comes back very positive?
Richard

User
Posted 26 Mar 2018 at 23:34
Originally Posted by: Online Community Member

MSK nomograms won't give me a score if I tick the "lymph node" box. I have "suspected" lymph node involvement. If I don't put that in my survival rate comes back very positive?
Richard

I don’t think MSK has a nomogram for your situation - only for people pre-surgery or with recurrence.

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

User
Posted 26 Mar 2018 at 23:35

ok, thanks Lyn.

User
Posted 27 Mar 2018 at 02:33

Yes too many differences to categorize all and changing situations. These are just an approximate indication and because based on past results, don't fully take into account recent and ongoing advances that are expected to provide improved and improving statistics. We know from our experience of members histology here that some men who are apparently at high risk do well while others at low risk have their cancer advance more quickly than expected for a number of reasons which include the type of cancer they have and how good their treatment was administered.

Barry
User
Posted 27 Mar 2018 at 07:34

Matron,

I am shocked that you referrered to Professor X as a “rogue”. My Consultant here, Mr Morbid, mentioned X’s name as a leading surgeon during my post biopsy follow-up. I realise there are PR people involved, articles in the press and private clinics with private operations at £15,000-18,000 a pop.

But the registrar who did my template biopsy said he will become a consultant next month, no doubt carrying out prostatectomies shortly after. Who would you choose (if you had a prostate)?

I must say when Her Loveliness had her menopausal difficulties we again consulted a “leading” gynaecologist, the former Head of Birmingham Womens’ Hospital several times privately. When it came to a total hysterectomy, I told him the name of the surgeon here in Coventry randomly allocated to carry out the surgery on the NHS, he said “He’s a good guy”, which was good enough for us.

And so it proved. She was in and out in under 48 hours and NO bleeding.

So the fact that a peer said the equivalent of “X is a good guy”, is good enough for me.

Time will tell if I’ve backed a loser.

Thank you for your devotion to this community.

User
Posted 27 Mar 2018 at 11:42

I haven’t given any indication of which consultants I was referring to. Members that have been badly affected and let down might name their surgeon privately but no one with any sense would even hint on an open forum as it would open themselves and PCUK to charges of libel.

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

User
Posted 28 Mar 2018 at 01:31

I think our member Capitalman was one of the men Lyn may have had in mind. He has not posted for a long time but when last he did he had been urinary incontinent for 4 years and counting. I believe he had a top surgeon too but they also have bad results. Of course ,overall better results should be had from an experienced and highly regarded surgeon than from a less experienced one.

So it has to be understood that sometimes results are poor. This thread is quite interesting :- https://community.prostatecanceruk.org/posts/t7691-Continence#post107637

Barry
User
Posted 28 Mar 2018 at 09:29

Where I really did back a loser was in my choice of GP(s) who did not bother to tick the PSA box on my annual blood tests from 2010 to 2017.

I have become evangelical about it now, asking all my 50+ friends “What’s your PSA level?”. More often than not they come back with: “What’s that?”. I just say, “Next time you are at the doctor’s, ask for a PSA test to establish a base line.”

One particularly stubborn pal in his late fifties at my table in the pub went to the loo about three times after three pints, whereas I remained sedentary after five or six. “A bit of prostate trouble, there Phil? Get your PSA checked!”

“I don’t go to the doctor”. Shame, because he seems to be a self-made millionaire with Ferraris and Bentleys and an account at Coutts & Co, but might lot live that long to enjoy it.......

Another local pub held a PSA testing night, with volunteer nurses taking blood samples in return for a voluntary contribution to this charity. They gave out a little credit card sized folded leaflet regarding PCa. I picked one up for Phil. Don’t know what he’s done about it...

You can lead a horse to water........

Edited by member 28 Mar 2018 at 09:31  | Reason: Not specified

User
Posted 14 Apr 2018 at 23:47

Rather than clog up someone else’s thread it seems more polite to respond to you here.

I don’t see this as my personal fiefdom at all but I do feel very protective of the more anxious or distressed members on here (that you don’t know and seem to have no respect for) and I have been around long enough to see others like you. You have had cancer for 5 minutes and suddenly think you are an expert, giving poor advice to others based on what two mates told you. I should just ignore you as most of the other regular posters do, but it worries me that even newer members than you will join, read your ‘advice’ and believe that you know what you are talking about. Your friend with the Coutts account has you sussed, perhaps - or has already been diagnosed but doesn’t particularly want it discussed.

Your maxim is a sensible one but you haven’t really stuck to it. We should just try to stay out of each other’s way but if you tell a new member incorrect info, I will continue to correct it unless the moderators tell me not to.

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

User
Posted 15 Apr 2018 at 20:02

Is "9 Thanks" a record on this website, in just 18 hours too.

"11 Thanks" now. And still rising !

Edited by member 21 Apr 2018 at 17:48  | Reason: Not specified

 
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