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Life is never simple!

User
Posted 06 Sep 2021 at 23:29

Hi. My last post confirmed that my first PSA test after RP was less than 0.1. It was previously 6.5.

This was despite histology confirming the Gleason score was 4+4 and that the tumor had breached the prostate. Lymph nodes were also ok.

Also, have just had my catheter removed after over 8 weeks. Am trying to go with the flow of everything ... as well as control the flow 😁

I often read of undetectable Gleason scores of less than 0.01.

My score is less than 0.1 is this simply down to the technology available?

Does the fact that the tumor breached the prostate significantly increase the risk of some cancer being left behind?

I believe the chances of reoccurrence are around 1 in 4?

My next PSA test is in January 2022.

I do normally manage to put all these thoughts in a box with the lid on.

Not tonight though 🤪

I am returning to work next week ... which in itself is fine.

However, whilst I have been off, work have began my a restructuring  consultation process.

I have been sent initial proposed changes. My role has disappeared!!

This has been confirmed in a teams meeting with HR. There is long process to go through and things may change. But there is a good chance that I will be expected to engage in a interview process for a new role.

After the last few months this is not the return to work I had expected and I do not feel either confident or comfortable.

 Any comments or similar experiences would be very welcome.

Best regards

MikeG

 

 

 

 

 

 

 

 

 

 

 

 

 

User
Posted 07 Sep 2021 at 00:03

Hi Mike

Hope the employment situation works itself out.

On the PSA front I wouldn’t be too concerned as it’s really down to how labs/docs/clinicians report it. My GP for instance generally say <0.01 even though the actual lab reading maybe lower. It’s just the threshold they report on usually so avoid any unnecessary worry for slight movements up/down with more sensitive PSA tech. Bollinge, who is also on this community forum, I think his PSA clinicians report with <0.1 as the threshold. Key point in both cases is so long as you see the < all is good as effectively means undetectable.

Best of luck and keep us posted!

Simon 

Edited by member 07 Sep 2021 at 00:05  | Reason: Not specified

User
Posted 07 Sep 2021 at 00:13
Are you in a union? If not, perhaps take up one of those '1 hour free' offers from an employment lawyer once you have had the initial meeting with HR. The employer will need to be very careful to avoid any hint that they are discriminating against you - being a cancer patient counts as a disability under the Equality Act.

<0.1 is undetectable - some surgeons don't like ultra-sensitive (2 or 3 decimal places) PSA reporting because they believe it is unreliable and causes unnecessary anxiety, and some hospitals / NHS trusts / path labs have decided to only report to 1 decimal place either for the same reason or because of worries about over-treating people with salvage RT / HT.

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

User
Posted 07 Sep 2021 at 07:30
Re work - good luck

Re PSA it depends on your attitude and beware <0.1 doesn't always mean the same. I had 3 tests in the summer first was 0.1 so I thought I had a problem, second at a different lab was <0.1, both were actually 0.063. So I "may" have a problem!

The first was a standard GP PSA screening test so only reported to an accuracy of 0.05 hence 0.06 rounded gave 0.1.

The second was a post RP screening test accurate to 0.01 but only reporting to 0.1 hence the <0.1.

So < is always good but may not be as good as you think it is! If you really want to be sure get an usPSA test that reports down 0.008.

User
Posted 08 Sep 2021 at 07:24

I've been involved in both sides of the process of restructuring; it's always stressful.

I wouldn't go to the lawyer for the free hour until you know what the position is, which you don't seem to know yet.  Organisations have to follow a process - have you been informed of this, e.g. what are the timescales, what meetings are to be held and how will the new positions be filled? If not, then ask. 

Also, if you compare the number of roles in the current and proposed structures, how many disappear? There are statutory requirements if the numbers are high. You should also look at the new roles - do you have Job Descriptions for them? If so, do any appear to be similar to your current role? If you are the best qualified for a new role then it would be hard for your organisation to give it to someone else as they would open themselves up to an unfair dismissal claim.

You should dig out your employment contract, as the lawyer will need to see this. Also, how long have you been employed at this organisation? If it's for some time, it would be worth working out what you should be paid in redundancy, remembering that a large chunk of redundancy is paid tax and NI free.

Oh, and I wouldn't tell anyone in the organisation that you are intending to retire in 18 months!

User
Posted 08 Sep 2021 at 11:11
My local billion-pound super-hospital only tests PSA to 0.1, so <(less than) 0.1 is classed as ‘undetectable’.

Some hospitals test to umpteen decimal points, and as our Matron, LynEyre will tell you, some lactating and post-orgasmic women express PSA detectable on these ‘super-sensitive assay’ tests. Very strange, as they don’t have a prostate gland!

The top cancer hospital in Britain, The Royal Marsden, only tests PSA to 0.4 and the top PCa oncologist there told me he regards super-sensitive assay as more trouble than it’s worth.

Let’s hope that your next PSA comes up as <0.1, but double check about the less than symbol, as it seems some GP receptionists didn’t do sums at school, and can’t find the < symbol on their keyboard anyway!

Moreover, if you have your medical records on the Patient Access app, that can’t display the less than symbol either.

Best of luck.

Cheers, John.

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User
Posted 07 Sep 2021 at 00:03

Hi Mike

Hope the employment situation works itself out.

On the PSA front I wouldn’t be too concerned as it’s really down to how labs/docs/clinicians report it. My GP for instance generally say <0.01 even though the actual lab reading maybe lower. It’s just the threshold they report on usually so avoid any unnecessary worry for slight movements up/down with more sensitive PSA tech. Bollinge, who is also on this community forum, I think his PSA clinicians report with <0.1 as the threshold. Key point in both cases is so long as you see the < all is good as effectively means undetectable.

Best of luck and keep us posted!

Simon 

Edited by member 07 Sep 2021 at 00:05  | Reason: Not specified

User
Posted 07 Sep 2021 at 00:13
Are you in a union? If not, perhaps take up one of those '1 hour free' offers from an employment lawyer once you have had the initial meeting with HR. The employer will need to be very careful to avoid any hint that they are discriminating against you - being a cancer patient counts as a disability under the Equality Act.

<0.1 is undetectable - some surgeons don't like ultra-sensitive (2 or 3 decimal places) PSA reporting because they believe it is unreliable and causes unnecessary anxiety, and some hospitals / NHS trusts / path labs have decided to only report to 1 decimal place either for the same reason or because of worries about over-treating people with salvage RT / HT.

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

User
Posted 07 Sep 2021 at 07:30
Re work - good luck

Re PSA it depends on your attitude and beware <0.1 doesn't always mean the same. I had 3 tests in the summer first was 0.1 so I thought I had a problem, second at a different lab was <0.1, both were actually 0.063. So I "may" have a problem!

The first was a standard GP PSA screening test so only reported to an accuracy of 0.05 hence 0.06 rounded gave 0.1.

The second was a post RP screening test accurate to 0.01 but only reporting to 0.1 hence the <0.1.

So < is always good but may not be as good as you think it is! If you really want to be sure get an usPSA test that reports down 0.008.

User
Posted 07 Sep 2021 at 10:22

Many thanks Simon, great to have the PSA results clarified. I think the work issue will be a lengthy process. The Homeless charity I work for are generally very fair ... but at 58 I rather hoped to maintain the status quo and semi retire at 60.

As I said: life is never simple 🙂

MikeG

User
Posted 07 Sep 2021 at 10:35

Thanks Lyn.

Good advice. The work issue is at the beginning of what will probably be a long process!

I expect there will be a number of changes for better or worse!!

I'm not in a negotiating mood at present, so the longer the process the better, at least for now.

My plan is to semi retire in 18 months ... So I also want to maintain good relations with my employer, who are good employers compared to many. 

Take care

User
Posted 07 Sep 2021 at 10:42

Thanks Franci ... It seems unecessarily complex, a standard way of reporting results would be better?

Life is never simple 🙂

User
Posted 08 Sep 2021 at 07:24

I've been involved in both sides of the process of restructuring; it's always stressful.

I wouldn't go to the lawyer for the free hour until you know what the position is, which you don't seem to know yet.  Organisations have to follow a process - have you been informed of this, e.g. what are the timescales, what meetings are to be held and how will the new positions be filled? If not, then ask. 

Also, if you compare the number of roles in the current and proposed structures, how many disappear? There are statutory requirements if the numbers are high. You should also look at the new roles - do you have Job Descriptions for them? If so, do any appear to be similar to your current role? If you are the best qualified for a new role then it would be hard for your organisation to give it to someone else as they would open themselves up to an unfair dismissal claim.

You should dig out your employment contract, as the lawyer will need to see this. Also, how long have you been employed at this organisation? If it's for some time, it would be worth working out what you should be paid in redundancy, remembering that a large chunk of redundancy is paid tax and NI free.

Oh, and I wouldn't tell anyone in the organisation that you are intending to retire in 18 months!

User
Posted 08 Sep 2021 at 10:47

Many thanks Peter.

No worries - not thinking of saying a word about semi retirement plans. Just wish to remain on good terms so I could stay on in some part-time capacity - not as a manager.

I have some probably outdated knowledge of Employment Law and my employer seems to be acting reasonably in terms of consultation, supplying proposed job descriptions, and a proposed reorganization which I have had an opportunity to feed back on etc.

Across the board there are more roles at my level being created, but not necessarily similar roles or roles that I would wish to take on. Certainly thet role closest to my present job is much more onerous and in my view not realistic ... I have fed this back along with constructive alternatives.

It's a wait and see game at present and will also involve negotiation with the local authorities. So could take a long time!!

Hopefully things will not get too messy ... But it's in the nature of this process that someone loses out!

Many thanks again.

MikeG

User
Posted 08 Sep 2021 at 11:11
My local billion-pound super-hospital only tests PSA to 0.1, so <(less than) 0.1 is classed as ‘undetectable’.

Some hospitals test to umpteen decimal points, and as our Matron, LynEyre will tell you, some lactating and post-orgasmic women express PSA detectable on these ‘super-sensitive assay’ tests. Very strange, as they don’t have a prostate gland!

The top cancer hospital in Britain, The Royal Marsden, only tests PSA to 0.4 and the top PCa oncologist there told me he regards super-sensitive assay as more trouble than it’s worth.

Let’s hope that your next PSA comes up as <0.1, but double check about the less than symbol, as it seems some GP receptionists didn’t do sums at school, and can’t find the < symbol on their keyboard anyway!

Moreover, if you have your medical records on the Patient Access app, that can’t display the less than symbol either.

Best of luck.

Cheers, John.

User
Posted 08 Sep 2021 at 11:18

Hi Mike, companies do have to reorganise every so often, especially if the market they operate in changes. So on the face of it this all looks very reasonable.

You are protected against discrimination, if you see evidence of it raise the matter, and if you do have to apply for your job make them aware of any adjustments that you think would be reasonable to allow you to do the new job.

Consider redundancy if your old role does not exist.

Remember you don't have a god given right to a job. If the job does not exist and if a similar job can't be reasonably adjusted to your requirements, then that is the way it is.

If things don't work out. See a good lawyer, they will tell you if you have a case, alternatively see a bad lawyer they will almost certainly try it on whether it is a good or bad case. 

Dave

User
Posted 08 Sep 2021 at 13:36

Thanks John.

It is definitely less than 0.1, my mobile does not have the symbol either. My results came direct from consultant meeting. 

My GP receptionists regard themselves as 'Gate Keepers' despite me reminding them that they are facilitating a service 🙂

Trying to put everything in its box with lid on till PSA test in December / January.

But as I am fond of saying "life is never simple."

Take care

MikeG

 

User
Posted 08 Sep 2021 at 13:48

Thanks Dave,

Say it as it is ... I have been through redundancy once before. 

My employer is generally a good employer...but in these processes people do Lise out.

There is certainly a valid argument for a restructure and they are following a reasonable consultation process.

The disability angle would be unlikely to have legs on a physical basis. As a manager my job - in theory - can be mostly office based.

They would be reasonable re time off for appointments and any future treatments.

My concerns are that returning to work after the last 6 months journey - incontinence, impotence and then possibly redundancy is giving my mental health a bashing!!

I am also a carer when home for my wife and the wage earner.

It's a long consultation process and involves local authorities. So a wait and see scenario.

Take care

MikeG

 
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