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Follow up appointments

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.

User
Posted 29 Apr 2021 at 18:14

Hi 

     Just read Your message really pleased he's doing so well after op I'm in on 7th for op feeling realy nervous at the moment just want it done and out the way now  

Cheers Bob 

User
Posted 29 Apr 2021 at 18:17
Excellent news. There is life after prostate cancer!

Chris

User
Posted 30 Apr 2021 at 12:50

Fabulous result. Long may it continue.

Ido4

User
Posted 30 Apr 2021 at 18:16
Bob,

He had his op at the beginning of June last year. After this time he is almost 100% back to normal. I say almost because although he is pretty much dry, he gets twitchy when he's going somewhere without a toilet. So the 'confidence' pad gets put on.

Straight after the op he was sore but generally not too bad. He took his pain killers on time so any pain didn't build up but after a few days he was ditching midday ones. There were other meds as well and injections into his stomach ( easy). I would recommend doing a tick chart so you can cross off what you take and know when the next one is. Days of the week across the top and various med down the side and tick as you go.

He was ok in the hospital, I spoke to him several times, eating ok etc. Couldn't go and see him because of the plague. But he was bad on his arrival home, he felt really sick, didn't want his tea and went off to bed. I don't know but I blame the journey home. My son picked him up in his very low BMW sports car. This car makes me feel car sick, so I reckon that had a lot to do with it.

We went over the top and bought a bed downstairs so he didn't have to climb up and he could have access to a loo and the kitchen. The next day he was absolutely fine.

He kept moving about, shuffling round the garden. Then up the road a little further each day. It's important to move around but don't go mad. Theres a lot of cutting, slicing and stitching internally, it's classed as major surgery, so keep that in mind. Don't lift anything heavier than a bag of sugar.

He was extremely nervous when he went in...who wouldn't be...but as I said earlier, look at him now, tree felling, hiking with our big dogs, concreting and fixing gaps in the Tarmac. He's back to normal and you will be too.

Keep in touch with how you go

LW

User
Posted 19 May 2021 at 14:08
Sounds like you are doing just fine👍

I think Tech Guy recommended Asda Hipster pants to me. They are great in keeping pads in place. Also I would recommend wearing joggers. OH, to feel more normal decided to wear belted jeans and proceeded to lean over the computer. The edge of the buckle dug into one of the wounds and opened it up a bit. He was back and forth to the nurse with that.

Keep up your pelvic floor stuff, they really do work. He still does them a year post op. Padless unless he feels he's going somewhere without a toilet nearby.

Good luck with your continued recovery and good luck with your 6 week consult. That psa test is a biggie,

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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.

User
Posted 29 Apr 2021 at 18:08
Quick update....latest psa result, April 2021... undectectable. It does me no good seeing that 'withheld' number come up on the phone but it's over again for another 3 months.

Couldn't find OH so after answering some security questions I was allowed to take the message. We have hopefully a F2F meeting with the surgeon in July for his 1 year post op chat.

It's hard to believe it's been nearly a year since his op (6th June). When I look back to that first sicky first night home when he felt awful and was probably wondering what the hell he'd done. Now look at him...I said to the sister I couldn't find him and he was probably up a tree somewhere chopping something off. I wasn't even joking.

So hang in there all you pre-oppers. It can and does get better.

User
Posted 29 Apr 2021 at 18:14

Hi 

     Just read Your message really pleased he's doing so well after op I'm in on 7th for op feeling realy nervous at the moment just want it done and out the way now  

Cheers Bob 

User
Posted 29 Apr 2021 at 18:17
Excellent news. There is life after prostate cancer!

Chris

User
Posted 30 Apr 2021 at 12:50

Fabulous result. Long may it continue.

Ido4

User
Posted 30 Apr 2021 at 16:31
Rooting for you Bob, I will be thinking of you on the 7th. Take it easy, small walks nothing strenuous to disturb all those stitches. Once that catheter comes out after 10 days you will feel a whole load better. Have you got your Instiligel ready in case of any irritation with the catheter? It's a great tip that I only found out about on here. Any questions just ask.
User
Posted 30 Apr 2021 at 16:52

Hi  mate

                Thanks for comment starting to get a bit nervous now it's going to be happenning but I'm thinking positive how was you straight after op was you ok when did you have yours done if you don't mind me asking I will ask about the gel cheers take care 

Bob

User
Posted 30 Apr 2021 at 18:16
Bob,

He had his op at the beginning of June last year. After this time he is almost 100% back to normal. I say almost because although he is pretty much dry, he gets twitchy when he's going somewhere without a toilet. So the 'confidence' pad gets put on.

Straight after the op he was sore but generally not too bad. He took his pain killers on time so any pain didn't build up but after a few days he was ditching midday ones. There were other meds as well and injections into his stomach ( easy). I would recommend doing a tick chart so you can cross off what you take and know when the next one is. Days of the week across the top and various med down the side and tick as you go.

He was ok in the hospital, I spoke to him several times, eating ok etc. Couldn't go and see him because of the plague. But he was bad on his arrival home, he felt really sick, didn't want his tea and went off to bed. I don't know but I blame the journey home. My son picked him up in his very low BMW sports car. This car makes me feel car sick, so I reckon that had a lot to do with it.

We went over the top and bought a bed downstairs so he didn't have to climb up and he could have access to a loo and the kitchen. The next day he was absolutely fine.

He kept moving about, shuffling round the garden. Then up the road a little further each day. It's important to move around but don't go mad. Theres a lot of cutting, slicing and stitching internally, it's classed as major surgery, so keep that in mind. Don't lift anything heavier than a bag of sugar.

He was extremely nervous when he went in...who wouldn't be...but as I said earlier, look at him now, tree felling, hiking with our big dogs, concreting and fixing gaps in the Tarmac. He's back to normal and you will be too.

Keep in touch with how you go

LW

User
Posted 30 Apr 2021 at 19:19

Hi 

       Will do take care 🍺

User
Posted 19 May 2021 at 12:07

Hi littlewren

                     Bob here well 2 weeks after op getting better each day surgeon said everything went well and was pleased didn't like the cafeter at all but only in a week so grinned and beared it only on pain releif a couple of days  incontinence a bit of a problem but not to bad so wear the pads got follow up in 6 weeks 🤞hope your keep8ng ok keep in touch take care Bob 

User
Posted 19 May 2021 at 14:08
Sounds like you are doing just fine👍

I think Tech Guy recommended Asda Hipster pants to me. They are great in keeping pads in place. Also I would recommend wearing joggers. OH, to feel more normal decided to wear belted jeans and proceeded to lean over the computer. The edge of the buckle dug into one of the wounds and opened it up a bit. He was back and forth to the nurse with that.

Keep up your pelvic floor stuff, they really do work. He still does them a year post op. Padless unless he feels he's going somewhere without a toilet nearby.

Good luck with your continued recovery and good luck with your 6 week consult. That psa test is a biggie,

 
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