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Different advice from consultants

User
Posted 05 January 2017 15:55:37(UTC)
We have been given some conflicting advice from consultants and would appreciate other views as we are not too sure which way to go.

David had his HDR Brachytherapy privately and we paid for it, and his radiotherapy on the NHS so he has two consultants.

Mr. A the private consultant is suggesting a Tesla. 3 scan in January after his next PSA. His last 2 PSA readings have come back as 0.1

Mr. B NHS consultant is saying PSA every six months and that's all he needs, scans are not required.

David is Gleason 9 locally advanced and therefore it's an aggressive type of PCa, so we want to do the right thing, but we are self funding and don't have endless funds, but we want to do the best thing for his welfare.

Our local surgery is of course following the NHS advice, which we can appreciate, and they won't refer him for the scan.

Any experience and views or advice would be appreciated.

Thanks

Leila
User
Posted 26 January 2017 19:54:08(UTC)

Best of luck with the psa ok !! I'm having mine done monthly now and it's doubling six-weekly. Can't wait for the scans so I at least know what's happening. What is immensely difficult is that I'm JUST beginning to recover 19 months after the op , only for treatment very likely to start again soon and spoil things. Feel like giving up sometimes , but yes you have to keep trying and enjoy stuff when you can x




If life gives you lemons , then make lemonade
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User
Posted 05 January 2017 18:54:03(UTC)

Although the psa level itself isn't always a true indicator of aggressiveness , it's rate of change is a good indicator of advancement or recession. In your shoes I would stick with psa testing just for now , but for freedom of worry would see my GP and ask politely if you could have 3 monthly testing. They may oblige. I personally have great faith in the NHS , and at the end of the day the private doctors mostly work for the NHS also. If your NHS doctor suspects recurrence , you will get the scan reasonably quickly hopefully




If life gives you lemons , then make lemonade
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User
Posted 06 January 2017 02:00:12(UTC)

Ha ha ha - no, but I investigate them sometimes! No more discussion though since this is a Google-searchable forum :-/

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


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User
Posted 05 January 2017 18:54:03(UTC)

Although the psa level itself isn't always a true indicator of aggressiveness , it's rate of change is a good indicator of advancement or recession. In your shoes I would stick with psa testing just for now , but for freedom of worry would see my GP and ask politely if you could have 3 monthly testing. They may oblige. I personally have great faith in the NHS , and at the end of the day the private doctors mostly work for the NHS also. If your NHS doctor suspects recurrence , you will get the scan reasonably quickly hopefully




If life gives you lemons , then make lemonade
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User
Posted 05 January 2017 19:26:04(UTC)

Thanks chris, I think we might go that route. We have been chewing over options and I've done quite a bit of reading that indicates it's the rise in PSA that's important. Thanks for taking the time to respond.

Leila.

User
Posted 05 January 2017 20:02:38(UTC)

I concur with Chris. I've never had any significant delay getting a scan done once my Onco has ordered it. The last time she requested scans, the appointment letter for the nuclear medicine scan arrived through my door on the morning after my consultation with her. You could have knocked me over with a feather. The NM scan took place 6 days later. The CT scan were real laggards , it was a further 10 days before the scan was done.

User
Posted 05 January 2017 20:19:17(UTC)
Thanks Col. U.
David thinks he might just do the three monthly PSA, and see how it goes.
He's a devoted Charlton Althletic supporter he started going to home games when he was 10.
We live in west Wales now, but he still gets nervous when they play, and upset when they loose.
Leila.








User
Posted 05 January 2017 21:45:55(UTC)

Originally Posted by: Online Community Member

He's a devoted Charlton Althletic supporter he started going to home games when he was 10.

In that case he will remember Phil Parkinson (Parky) who is probably the best manager ColU ever had. He was with Charlton for a while after moving on from ColU.

User
Posted 05 January 2017 22:22:46(UTC)
Col,U. David passes on his thanks for sending Mark Kinsella, he was captain when they were in the premier league.
User
Posted 05 January 2017 23:07:48(UTC)

At 0.1 the cost of a private scan could be money down the drain - we have been told that nothing is likely to show up until the PSA is over 1.0

I am not sure why the private guy is suggesting scans anyway - 0.1 seems a pretty good result considering your OH does still have a prostate which will be secreting some PSA from healthy cells???

I wouldn't accept anything less than 3 monthly tests though - 6 month gap seems a long time for a G9

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


User
Posted 05 January 2017 23:31:13(UTC)
Thanks Lyne. We have been discussing this evening, and decided to go with the three monthly PSA.
advice from you and others is appreciated,
Can I make a guess you might be a SW in residential/ fostering ... don't answer if you think I am over stepping the mark, just interested.

Leila.
User
Posted 06 January 2017 02:00:12(UTC)

Ha ha ha - no, but I investigate them sometimes! No more discussion though since this is a Google-searchable forum :-/

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


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User
Posted 06 January 2017 11:51:15(UTC)

Originally Posted by: Online Community Member
Col,U. David passes on his thanks for sending Mark Kinsella, he was captain when they were in the premier league.

Mark was loved, and I mean really loved, by the supporters of both of our clubs. It's something that binds us together.

Up the Addicks!

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User
Posted 26 January 2017 18:23:13(UTC)
Read this comment today and it resonated with me.
The most complicated part of cancer is not the treatments but working out the politics behind the treatment.

Leila





User
Posted 26 January 2017 18:51:02(UTC)

I'm not sure it's even that tbh. For many on here it is the relentless mental anguish whether cured or uncured. It scars you forever one way or another it seems :-((




If life gives you lemons , then make lemonade
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User
Posted 26 January 2017 19:26:38(UTC)
Chris ....Yep, I think I get that, David is due to have his PSA tomorrow and see the oncologist soon... this whole roller coaster stuff is very painful for him... and I watch him suffer. I try to keep a lid on my feelings, but I know they leak out. The politics stuff iritates me I suppose it's as if this crappy disease ain't enough to manage.
The not knowing whether it's cure or not is intolerable.
Yet we somehow seem to keep going,even enjoy too.




Leila
User
Posted 26 January 2017 19:54:08(UTC)

Best of luck with the psa ok !! I'm having mine done monthly now and it's doubling six-weekly. Can't wait for the scans so I at least know what's happening. What is immensely difficult is that I'm JUST beginning to recover 19 months after the op , only for treatment very likely to start again soon and spoil things. Feel like giving up sometimes , but yes you have to keep trying and enjoy stuff when you can x




If life gives you lemons , then make lemonade
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User
Posted 17 December 2017 21:34:40(UTC)

Good to learn David continues to do well physically and that his PSA is still so low. Am not in a position to comment on whether a bone scan is advisable in his case and if so why.

The subject of insurance comes up from time to time and you may be able to find one of the threads. Try google as the threads from this forum are usually much more easily found that way rather than by using the poor search facility on this forum.

I have always taken the view that unless a man's PCa is at an advanced stage, for a holiday of say 2 or 3 weeks the potential extra cost of covering PCa is not worthwhile, so have always carried my own risk on it so far. I have however always informed my insurers though. (This is information and does not constitute advice).

Festive greetings warmly reciprocated.

Barry
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