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Help with Doubling Time Calculator

User
Posted 19 Dec 2014 at 01:47

MH sadly died of pneumonia after breaking his hip and wrist
I miss him so very much
Before he died he started legal proceeding against his doctors who failed to refer him to a specialist in Feb 2011 with a PSA of 5 at the age of 66
The expert witness has said that the Doctors didn’t follow NICE guide lines but says that at that time, in all probability he had bone metastases and has worked something out on a Doubling time calculator
Please can anyone check this for me I can’t work it out?
I believe if the cancer had been discovered back then he could have had a prostatectomy.
He was finally diagnosed in 2013 after an X-ray where they found abnormalities with his bones
The doctor said he should have a bone scan but it would take a couple of months
We paid for one the next day
He was told then he had extensive bone metastases
He had a PSA of 10.5 on 19 July 2013 rising to 12.00 on 24 July and in Aug2013 it was 17.00
He had a Gleason of 8 and was said to have adenocarcinoma of prostate
Hormones Started Aug 2013
17 Oct 2013 PSA 0.1 Alkaline Phosphatase 1037
11 Dec 2013 PSA 0.2 AP 425
2 Jan 2014 PSA 0.2 AP347
16 Jan 2014 PSA 0.1 AP298
Feb 2014 PSA 0.2
March PSA 0.3 Ap356
June 2014 PSA 2.5 Ap 966
24 june PSA 3.4
He had been started on Casodex and was due to be started on trial of abiraterone
Expert Witness said he became hormone resistant as two months I can’t see that
Looks more like 6 months to me

In 28 Dec 2011 MH Alkaline phosphatase levels were 93 in normal range. In Feb 2011 he had PSA of 5 So 10months later he showed no rise in levels and yet expert witness is saying he had bones Mets in the previous Febuary THIS does not make sence
By April 2013 my husband had severe back pain and his alkaline phosphatase had risen to 2388, it still trigger any alarm bells with GP
They treated him for muscular pain
I understand now that at this level it is a marker for bone metastases
The Expert witness says that an early diagnosis would in all probability made no different to the outcome for my husband
I cannot except this and want justice for him
I would appreciate any help or advice

User
Posted 19 Dec 2014 at 09:36

Robbo, this isn't what you want to hear but in all honesty, I think you will find a legal battle a waste of time and onerous in terms of your own health and wellbeing. The expert witness is exactly that, an expert putting their reputation on the line so I would imagine is very sure of his or her interpretation. Based on the fact that your OH had extensive bone mets at the age of 65, he is likely to have had the cancer for many years before 2011 so your assumption that surgery might have been offered is naive I think. Is there any reference to his testosterone levels in the medical records?

I do hope that you find some answers, some peace and a way to bear your pain but I am not sure that a legal battle is the way forward.

Sorry,
Lyn

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

User
Posted 19 Dec 2014 at 10:01

Robbo

I can only agree with Lyn. To be involved in a stressful case where the evidence is not totally in your favour, and is open to question and interpretation, cannot be any good for your long term health.

Of course you want to do your best in your husband's memory, and no-one would criticise you for that, but from the evidence provided, from my non legal prospective, it looks a very difficult case to prove.

Had he been referred straight away, things may well have been different, but the key word is 'may'.

Paul

Stay Calm And Carry On.
User
Posted 19 Dec 2014 at 13:09

Robbo

I had a very similar experience to You and your late husband, I had some blood tests and endoscopy done in 2011 |I was told nothing was found. In December 2013 I had some more blood tests to check my kidney function and at the same time had a PSA test done, the PSA was 7.7 and when my records were re-checked the test in 2011 was 6.9.

I was fortunate if that is the right word that my prostate was removed and 8 months on have an PSA of 0.03, continence is okay but have ED.

It is nothing in comparison to your loss, but I get very angry when I think about that missed test result, would my outcome of been better if treated three years earlier, what has it done for my life expectancy ? We put our trust in the medical profession and unfortunately when they let us down the consequences are devastating.

I am still contemplating whether to take action or not but an acquaintance who lost his wife through another missed diagnosis at our medical centre did say he found no satisfaction or closure from taking action and was very frustrated by the whole process.

Lyn and SF2 are probably right that the fight may not be worth the outcome .

My thoughts are with you.

Thanks Chris

 

User
Posted 19 Dec 2014 at 18:17

Hi Robbo,

Have to agree that you face a difficult time proving anything from the figures.

There are many varieties of P.Ca. and they often behave differently. With widespread bone mets the psa figures become less reliable.

For example, a man could die with bone mets with a psa in the hundreds or more. Or, with a psa below 1.

As the cancer cells mutate, some daughter cells give off high psa . Others none - zero psa . So you can perhaps see that if very advanced, the psa may in fact be quite low but the cancer is romping away unseen. The treatment may have killed off some psa producing cells but not the others. Some men have died where the psa never went above say 10 whilst others have recorded figures in the many  thousands.

 

I think we just have to accept that without national screening starting at say age 50, then some men will be diagnosed with very advanced disease as often there are few symptoms. Your husband may well have been like myself and others here where the problem started in our forties. Possibly early fifties in his case. Perhaps a way to look at it is that he had years of no treatment side effects. And such treatments may not have increased lifespan unless diagnosed in those very early years.

It is true that some GPs have dismissed Prostate Cancer as a disease of only elderly men but something has changed and more younger men are being affected. Environment; diet, lifestyle, pollution, modern chemicals - we still don't know what has caused this increase. All we know is that cancer has become a bigger health problem over the last fifty years.

 

All I can add is that many younger GPs are becoming more aware and the hope is that all will in time.

I do hope you will find peace of mind for yourself .

User
Posted 20 Dec 2014 at 09:14

There is a court case pending as a solicitor took it on for MH on no win no fee

 

Two experts have already no doubts that MH should have been refered to a consultant with his first PSA reading 

Its the readings and the doubling time I wanted sorted and worked out I just cant figure out how to do the calculation myself

My family and I are determined to help promote awareness and helped with a bucket collection for Prostate Cancer Cymru  in memory  of

my husband who had played International rugby .

 

User
Posted 20 Dec 2014 at 10:40
Hi Robbo

You can find PSA doubling times calculators on the Internet where you input the dates and results into the calculator and it does it for you.

http://nomograms.mskcc.org/Prostate/PsaDoublingTime.aspx

I hope you are successful in your quest for the answers you seek.

Roy

User
Posted 20 Dec 2014 at 10:40

I wish you all the best with your case. That he wasn't referred first time is something I cannot understand. The publicity it could bring could lead to more early referrals, and win or lose, that's no bad thing.

Paul

Stay Calm And Carry On.
User
Posted 22 Dec 2014 at 11:20

Thats what I am hoping for 

I have worked out doubling time to be 20.66 months but I cant fathom out what it means Cannany one explain Please

User
Posted 22 Dec 2014 at 12:36
Hi Robbo

The way to interpret it is that if you started of with a figure of 1 it would take 20.66 months to double to 2 and another 20.66 months to reach 4 etc ie (1,2,4,8,16,32,64,128). Hope that helps.

All the best

Roy

User
Posted 22 Dec 2014 at 18:27

Hi Robbo all the best with the case if successful it will make Gps take it more serious, after my diagnosis no symptoms my neighbour who showed symptoms got told by GPs we can't test all men as we would do nothing else ,he was rather abrupt with him and blood test was taken. Keep us informed on progress Andy

User
Posted 29 Dec 2014 at 02:54

Robbo, what point are you hoping to make with the doubling time? Your OH's doubling time pre diagnosis has to be worked out separately to the doubling time once HT started, and his doubling time in the late stages is different again.

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

User
Posted 29 Dec 2014 at 23:58

The Expert witness has said "in IR case the psa tests did not show an overall level that was related to the amount of disease present This suggests uncertaintainty about PSA doulbing time

If the faster doulbing time of 1.17 months is used then on the balance of probablity subclinical metastases  would not have been present in feb 2011 If however the PSA doulbing time of 22 months was used there is a possibility that they were

The PSA doubling time once IR was treated with hormones therapy and was relapsing was in region of 2 months (I QUESTION THIS )

In viewe of the fact that the PSA value under estimated the extent of the disease and there is uncertainty about the PSA doubling time then this is the best discriminator of then the metastases were first precent 

She also looked at Gleason and says 8 is not so significant that one would expect metastic disease to occur in two years The psa value underr estimated the extent of metastatic disease and in 2013 there was considerable extensive metasatic disease present

These are the conclusions 

I would like to understand doubling time and I just dont get it 

 

 
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