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NHS Prediction Tool

User
Posted 15 Mar 2019 at 11:15

Just flagging this tool for awareness......

Here's a link to a preamble.....

https://www.nhs.uk/news/cancer/online-tool-helps-men-choose-best-prostate-cancer-treatment/

Here's a link to the prediction tool

https://prostate.predict.nhs.uk/

Flexi

 

 

 

User
Posted 15 Mar 2019 at 11:15

Just flagging this tool for awareness......

Here's a link to a preamble.....

https://www.nhs.uk/news/cancer/online-tool-helps-men-choose-best-prostate-cancer-treatment/

Here's a link to the prediction tool

https://prostate.predict.nhs.uk/

Flexi

 

 

 

User
Posted 16 Mar 2019 at 14:52

It’s most probably because the NHS definition of being continent (for the post-op QoL records) is using one pad per day or less, whereas the definition here seems to be one pad per month or less. The official NHS stat is that by 12 months post op, 90% of men are using one pad or less each day.

I suspect the 66% is the proportion that can get an erection using mechanical or chemical aids, same definition as the QoL survey.

Edited by member 16 Mar 2019 at 14:53  | Reason: Not specified

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

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User
Posted 15 Mar 2019 at 13:45

Thanks. I had a quick look at it a couple of days ago.

It looks like it is still early stages and woułd benefit from further development.

Its a start though, most of us have been using the Memorial Sloan Kettering tool up to now.

What do others think?

Ido4

User
Posted 15 Mar 2019 at 14:37
Call me a cynic but it looks to me like a tool to help NHS staff to persuade men to go on AS :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Mar 2019 at 15:34

 

Originally Posted by: Online Community Member
Call me a cynic but it looks to me like a tool to help NHS staff to persuade men to go on AS :-/

What, nickel and diming from our multi-billion pound NHS, ’The best in the world’?

In fact, it was the best in the world for me, because I was pro-active (awkward and demanding and knowledgeable?), and had brilliant treatment.

So I put my pre-operative details into this NHS Prediction Tool and it seemed to suggest that I could go on active surveillance under the ’conservative’ option, with not that much of a difference in prognosis if I chose the ’radical’ option.

However, the four consultants I saw before my radical prostatectomy all concurred that ‘conservative’ AS was totally inapproriate, given my biopsy results!

Cheers, John.

https://en.m.wikipedia.org/wiki/Groom_of_the_Stool

.

Edited by member 15 Mar 2019 at 18:36  | Reason: Not specified

User
Posted 15 Mar 2019 at 15:46

The more data the merrier.  It's easy to understand.

From a quick look age is the big factor in life expectation in many cases.  There is surprising little change for many diagnoses.  Although if you're the one in 100 there probably is, and out of 40,000 a year that's quite a lot.

It's a surprise that 20% of RP patients have to wear at least 1 pad a month after 3 years compared with 3% after RT.  I thought RP would be less than that.

Around 60% of RP patients have ED compared to around 40% of RT patients.  That also seems higher than I thought for both cases although not much probably.

Thanks for this info Flexi.

Edited by member 15 Mar 2019 at 15:52  | Reason: Not specified

User
Posted 15 Mar 2019 at 23:44
I put my dad's figures in and it said he should still have been here 15 years later, he was dead from prostate cancer in 3. I guess they will say that's statistics for you.

Anyway I hope it's correct re survival, and given the rates for ED and incontinence I am now starting to feel very lucky..

User
Posted 16 Mar 2019 at 00:49

How accurate are these prediction tools? This one does not appear to take into account whether the margins were positive or negative. A negative margin does not mean  that the cancer will not come back and positive margin does not mean that it certainly will, although a positive margin clearly presents a higher risk that it will. In relation to the number of positive cores, it does not appear to make any distinction between, for example, 8 out of 10 cores which contain 100% cancer and 10 which contain 1%. From what I can gather this would also have a significant impact on the likeliehood of  the cancer returning. I am not at all convinced that these predication tools are that helpful. Surely the best information that a PCa cancer patient can expect to get is from the medical expert with conduct of his treatment, who can presumably provide an expert prognosis based upon the patients individual circumstances, taking into account pre op PSA, the biopsy results, the histology findings etc. It seems to me that these prediction tools are likely to give a false sense of security or be quite unsetteling.

Edited by member 16 Mar 2019 at 00:53  | Reason: Not specified

User
Posted 16 Mar 2019 at 02:10
It isn't intended for men to use post-op Zebulon, it seems to be a tool being developed in the NHS to help newly diagnosed men decide whether to go for surgery, radiotherapy or active surveillance. I think it is still in the development stage.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Mar 2019 at 08:27
I think what the tool shows is probably what anyone who has been on here for long realises, namely PC is a bit of a lottery. Some people with high grade disease beat the odds and are still here 15 years later while some folks with lower grade disease don't.

The truly shocking part of the stats is how little difference radical treatment seems to make.

Like Lyn says an NHS campaign to reduce interventions maybe!

User
Posted 16 Mar 2019 at 13:52

"This tool is only for use in men without metastatic disease where conservative management and radical treatment are both options being considered."

In other words, it is not intended to be used when AS has already been judged inappropriate.

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 16 Mar 2019 at 14:30

Originally Posted by: Online Community Member
I think what the tool shows is probably what anyone who has been on here for long realises, namely PC is a bit of a lottery. Some people with high grade disease beat the odds and are still here 15 years later while some folks with lower grade disease don't /quote]

Exactly what I think these days, you only have to read folks journeys on here to realise that. 

The 20% incontinence after RARP didn't  surprise me though. I think they downplay this on pre op counselling and usually quote about 5%. I bet if most men were being totally honest after surgery it would be nearer to the 20%. 

I was surprised at the 66% risk of ED after surgery at 3 years for non nerve sparing as surely the 34% supposedly ok must be using pumps, penile implants or injections as nerves do not grow back ( unless they were left behind by accident)

 

Ann

User
Posted 16 Mar 2019 at 14:52

It’s most probably because the NHS definition of being continent (for the post-op QoL records) is using one pad per day or less, whereas the definition here seems to be one pad per month or less. The official NHS stat is that by 12 months post op, 90% of men are using one pad or less each day.

I suspect the 66% is the proportion that can get an erection using mechanical or chemical aids, same definition as the QoL survey.

Edited by member 16 Mar 2019 at 14:53  | Reason: Not specified

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

 
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