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User
Posted 06 Nov 2020 at 22:52

Hi again folks,

just a question about follow ups. OH had his 6 week post op. Psa test a little over three months ago. Came back as undetectable..phew...but he's due another one now I presume, but the sound of silence is deafening.

I think he's still under the care of the hospital as opposed to the gp and the  last time they sent a form to have the blood taken and the results to be sent to the surgeon. Then we had a letter confirming the results from the surgeon. Nothing face to face because of covid I presume.  But as I say, so far a big fat nothing. He was due end of October.

 

 

 

 

 

User
Posted 06 Nov 2020 at 23:59

You could try calling the urology secretaries at the hospital.

Failing that, try calling the urology CNS/Macmillan nurse.

Failing that, your GP might be happy to just do a PSA test - mine would, but I've heard of others who won't without the hospital telling them to. However, your husband should also be linked up with things like Andrology/ED clinic by now for penile rehabilitation, unless that side of things is all working OK.

Clearly, COVID-19 work is a major issue for most hospitals, with several announcing today they've closed for elective work.

User
Posted 07 Nov 2020 at 03:51

I would phone the GP and ask, to save his time and yours, if he could give you a year’s supply of blood test forms, one for every three months. Mine did, and when they ran out I just photocopied some more. I am on six monthly testing now.

Here in Coventry, there are loads of options for phlebotomy, as many local chemists do it, although my surgery, the biggest in the area, does not! And they close on Thursday afternoons and this week were closed on Wednesday afternoon as well, for ‘staff training’. Bloody useless, and most doctors are either part-time or transient locums. For a hundred grand a year we should expect better.

In some areas it seems, getting a PSA test done is like getting blood out of a stone (see what I did there?)

Cheers, John.

Edited by member 07 Nov 2020 at 05:15  | Reason: Not specified

User
Posted 07 Nov 2020 at 08:44

Littlewren

As advised give your urology department a call. The frequency between post op tests does seem to be getting longer and the NICE guidance now mentions at least  every six months for the first two years.

Thanks Chris

Edited by member 07 Nov 2020 at 09:38  | Reason: Not specified

User
Posted 07 Nov 2020 at 09:07

Hi,

In addition to suggestions above, you could also contact your hospital's PALS service. I emailed mine recently and I won a PSA test and telephone consultation. 

Good luck. 

User
Posted 07 Nov 2020 at 14:23

Littlewren

It certainly should be better than this and only the other day a head of NHS was saying don't keep away from our services. I am fortunate that we have about 6 urology/ oncology department nurses and an answer phone that normally gets a reply the same day or next day, apart from weekends. Just to point out on my NICE guidance comment, The guidance does say at "least" every six months and many still get three monthly tests. My hospital has pushed them to four months. Hope you get it sorted.

Thanks Chris

User
Posted 08 Nov 2020 at 03:39

He really does need to have three-monthly tests for the first year or eighteen months. I have only just extended mine to six months after two and half years. As I said, I have a sheaf of forms and I decide when to get tested.

Three friends of mine had ops around the same time as me, and they all had recurrence, picked up by frequent PSA testing, and are now having adjuvant radio and hormone therapies.

It seems a postcode lottery about these bloody tests, but I told you before how easy it is for me. I will have one next month, so I can put my flatline PSA ‘undetectable’ graph🤞 on my Christmas card to my brilliant surgeon.

Cheers, John.

Edited by member 08 Nov 2020 at 03:40  | Reason: Not specified

User
Posted 08 Nov 2020 at 13:12
I can only echo what others have said. Contact Urology (IMO it's too early to be asking your GP). Your surgeon should have a PA - try speaking to them if the specialist cancer nurse appears unavailable.

I know that during the last covid lockdown my SCN was relocated to A&E. She still rang back if you left a message, but I'm guessing they're not all able to manage that.

User
Posted 22 Dec 2020 at 19:54

Fantastic news and just in time for xmas. 

Kev.

User
Posted 22 Dec 2020 at 19:59

Great result.....the best Christmas present.

User
Posted 22 Dec 2020 at 20:10

Fabulous news. 

Ido4

User
Posted 22 Dec 2020 at 22:00

Littlewren,

Great news. Thanks Chris

User
Posted 23 Dec 2020 at 15:21
Good luck with it,Peter.

I envy you your calm disposition. I am a naturally pessimistic and anxious personality. This malarkey does me no good at all. OH was never an anxious person but that has altered slightly post diagnosis.

The only good side of getting real anxious about it, is the flood of relief that comes ( hopefully) afterwards. It hits almost euphoria.

But living in 3 month chunks is rubbish.

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User
Posted 06 Nov 2020 at 23:59

You could try calling the urology secretaries at the hospital.

Failing that, try calling the urology CNS/Macmillan nurse.

Failing that, your GP might be happy to just do a PSA test - mine would, but I've heard of others who won't without the hospital telling them to. However, your husband should also be linked up with things like Andrology/ED clinic by now for penile rehabilitation, unless that side of things is all working OK.

Clearly, COVID-19 work is a major issue for most hospitals, with several announcing today they've closed for elective work.

User
Posted 07 Nov 2020 at 03:51

I would phone the GP and ask, to save his time and yours, if he could give you a year’s supply of blood test forms, one for every three months. Mine did, and when they ran out I just photocopied some more. I am on six monthly testing now.

Here in Coventry, there are loads of options for phlebotomy, as many local chemists do it, although my surgery, the biggest in the area, does not! And they close on Thursday afternoons and this week were closed on Wednesday afternoon as well, for ‘staff training’. Bloody useless, and most doctors are either part-time or transient locums. For a hundred grand a year we should expect better.

In some areas it seems, getting a PSA test done is like getting blood out of a stone (see what I did there?)

Cheers, John.

Edited by member 07 Nov 2020 at 05:15  | Reason: Not specified

User
Posted 07 Nov 2020 at 08:44

Littlewren

As advised give your urology department a call. The frequency between post op tests does seem to be getting longer and the NICE guidance now mentions at least  every six months for the first two years.

Thanks Chris

Edited by member 07 Nov 2020 at 09:38  | Reason: Not specified

User
Posted 07 Nov 2020 at 09:07

Hi,

In addition to suggestions above, you could also contact your hospital's PALS service. I emailed mine recently and I won a PSA test and telephone consultation. 

Good luck. 

User
Posted 07 Nov 2020 at 13:32
Bit of a joke really. He's linked up with nothing, no clinics...nothing. It almost feels like, yes you've had your op, it went well and you've had your undectable psa, so get on with life. We know this is not what happens but it feels like it.

The last two letters have been the histology from the surgeon including the psa form. Then the result and all it said was, I've seen your results and they're undetectable and I hope that reassures you. No mention of what happens next. Since then..zilch.

I am presuming covid is playing a big part in all this....again :(

I guess we will have to ring the urology ward and ask if it's 3 or 6 months. Not holding out much hope, last time he tried to contact them we asked for a ring back and we heard nothing. We also have a designated nurse but getting hold of the Queen would easier.

It's so flustrating having to fight for stuff. Leading up to the op and during it, everything ran like clockwork.

Gotta be this damn virus.

User
Posted 07 Nov 2020 at 14:23

Littlewren

It certainly should be better than this and only the other day a head of NHS was saying don't keep away from our services. I am fortunate that we have about 6 urology/ oncology department nurses and an answer phone that normally gets a reply the same day or next day, apart from weekends. Just to point out on my NICE guidance comment, The guidance does say at "least" every six months and many still get three monthly tests. My hospital has pushed them to four months. Hope you get it sorted.

Thanks Chris

User
Posted 08 Nov 2020 at 03:39

He really does need to have three-monthly tests for the first year or eighteen months. I have only just extended mine to six months after two and half years. As I said, I have a sheaf of forms and I decide when to get tested.

Three friends of mine had ops around the same time as me, and they all had recurrence, picked up by frequent PSA testing, and are now having adjuvant radio and hormone therapies.

It seems a postcode lottery about these bloody tests, but I told you before how easy it is for me. I will have one next month, so I can put my flatline PSA ‘undetectable’ graph🤞 on my Christmas card to my brilliant surgeon.

Cheers, John.

Edited by member 08 Nov 2020 at 03:40  | Reason: Not specified

User
Posted 08 Nov 2020 at 13:12
I can only echo what others have said. Contact Urology (IMO it's too early to be asking your GP). Your surgeon should have a PA - try speaking to them if the specialist cancer nurse appears unavailable.

I know that during the last covid lockdown my SCN was relocated to A&E. She still rang back if you left a message, but I'm guessing they're not all able to manage that.

User
Posted 22 Dec 2020 at 18:19
Finally got the psa result....still undetectable. Hooray.!

We spoke to our designated nurse who we haven't spoke to since march :-/

She's sending a batch of forms out so we don't have to faff about in the future. But for now that awful underlying tension has gone, you know the one, where it burns away slowly at the back of your mind no matter how busy you are.

I think finally I can unknot my stomach and enjoy Christmas.

User
Posted 22 Dec 2020 at 19:54

Fantastic news and just in time for xmas. 

Kev.

User
Posted 22 Dec 2020 at 19:59

Great result.....the best Christmas present.

User
Posted 22 Dec 2020 at 20:10

Fabulous news. 

Ido4

User
Posted 22 Dec 2020 at 22:00

Littlewren,

Great news. Thanks Chris

User
Posted 22 Dec 2020 at 22:48
Great news. I've had trouble getting my PSA test this time. Everything has now gone online and there's no-one you can call. Finally had the blood test today, but who knows when I'll receive the result in the current situation?

Luckily I seem to be the only person who doesn't suffer from anxiety about the results. It is what it is and I'll find out when I need to.

User
Posted 23 Dec 2020 at 15:21
Good luck with it,Peter.

I envy you your calm disposition. I am a naturally pessimistic and anxious personality. This malarkey does me no good at all. OH was never an anxious person but that has altered slightly post diagnosis.

The only good side of getting real anxious about it, is the flood of relief that comes ( hopefully) afterwards. It hits almost euphoria.

But living in 3 month chunks is rubbish.

 
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