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A rise on this test

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User
Posted 15 Nov 2018 at 18:46

Thanks all

Paul my tests have been done at DRI for the past few years. So same lab

Ray I really have no idea. When I asked the oncologist this a few years ago she said they would look at HT when the PSA hit 20. I’m no expert but that seems high to me.

Pete the link doesn’t work. I’m aware there can be variables with super sensitive tests but <0.01 to 0.08 seems a significant rise 

I’m starting to get a bit worried now. I’m hoping I don’t need any more treatment but if I do I’ve no idea what would be best and when ☹️

Bri

Edited by member 15 Nov 2018 at 18:48  | Reason: Not specified

User
Posted 15 Nov 2018 at 21:43

Brian

You need to copy and paste into a browser. I will try and convert to a URL when I get a moment.

DONE :)

P

Edited by member 16 Nov 2018 at 16:08  | Reason: Not specified

User
Posted 16 Nov 2018 at 11:47

Bri

Never great to get a rise whatever the reason might be. As we  know heading to the next test after a fall is always easier. Prostate Pete's Yano link is an interesting read also worth following the links within the article. Easier said than done but put to the back of your mind. Thanks Chris

 

User
Posted 16 Nov 2018 at 14:05
Cheers Chris. It is difficult when you’ve started to think you may have actually beat it to then get a reading that suggests you may not have after all

Bri

User
Posted 16 Nov 2018 at 15:59

Originally Posted by: Online Community Member
Brian

You need to copy and paste into a browser. I will try and convert to a URL when I get a moment.

P

 

All you need to do is click 'edit' at the side of your post, hover your cursor over the end of the link and press enter. 

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

User
Posted 16 Nov 2018 at 16:08

Sorted Lynn. Cheers!

User
Posted 17 Nov 2018 at 00:56

Originally Posted by: Online Community Member

Thanks John, I obviously hope it’s not the first sign of recurrance but if it is I’m not sure a scan would help as I would have run out of curative treatment options

Bri

Scans are worth it if they discover areas outside previous RT zones they can be zapped. Look up oligometastatic disease.

User
Posted 17 Nov 2018 at 02:01
The guy at the Royal Marsden said should I encounter several successive rises in PSA over several tests of whatever accuracy, then a scan ought to be the next step. I think a Choline scan is the best you can hope for on the NHS, whereas the superior Gallium 68 PSMA scan is likely to cost £2600 privately at one of the few UK centres to have the capability.

There are reports that a PSMA scan is less than half that price in Germany, and a quarter in India.

They have a PSMA scanner at the Royal Marsden, unsurprisingly as it’s the number one cancer hospital in Britain, but the Consultant there told me it’s ‘a local scanner for local people’ in an echo of the phrase from ‘The League of Gentlemen’!

So if you are wealthy enough to live in leafy Surrey, you get better medical treatment than the rest of us serfs living elsewhere. Postcode lottery again.

Cheers, John.

User
Posted 17 Nov 2018 at 10:04
Many thanks Francij and John. Your thoughts have prompted me to do another post on this subject

Bri

User
Posted 30 Jan 2019 at 21:39
Bloods given yesterday in readiness for the oncologist appointment on the 5th. Also had a ultrasound scan today as I’ve had some lower right abdomen discomfort. Internal organs fine but I have some gall stones.

So will see if the PSA has risen again and what the oncologists thoughts are

Bri

User
Posted 30 Jan 2019 at 22:36

Bri

Fingers crossed for next week's appointment, hopefully just a blip. As for the gall stones, avoid M&S cheese and onion quiche and Baileys.

Thanks Chris

User
Posted 05 Feb 2019 at 12:30

Just back from appointment with oncologist well a registrar actually. PSA is now 0.12 which is a bit crap. Registrar said it is a recurrence which surprised me as I thought it had to hit 0.2 or three successive rises to be classed as a recurrence. She said still small numbers. Queried scans as I have had some twinges in the pelvic area and mid back ache but she said at 0.12 it won’t be PCa so would not agree to scans at this point. Hope she’s right on that one.
Interestingly she said they wouldn’t look at treatment until the PSA was above 1 which is a contradiction on what the oncologist told me previously.
So I have another PSA test in three months although they initially said 6 months. Going to think about whether it’s worth paying for some scans if only for peace of mind.
She did try to lighten the situation by saying C’mon you’ve been here before. I reminded her that I hadn’t actually

I am going to insist on seeing an oncologist next time or try to go elsewhere if thats possible 

Bri

Edited by member 05 Feb 2019 at 12:32  | Reason: Not specified

User
Posted 05 Feb 2019 at 13:10
Really sorry to see this Bri - as you know John went up to 0.11 and then back down to <0.1 so we are not engaging with the prospect of treatment until we have to. John has been told he can have an FACBC scan if he gets to 0.2
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Feb 2019 at 13:21
User
Posted 05 Feb 2019 at 13:26

Thanks Lyn, heres hoping i follow Johns lead. Is the FACBC scan done at Leeds and is it as effective as the PMSA scan (or whatever it is). The nurse at PCUK has said that below 0.2 that only had a 25% success rate.

Bri 

User
Posted 05 Feb 2019 at 13:27

Sorry to see this Bri. The evidence is clear that the sooner treatment is initiated i.e. before it rises too much above 0.2 the better the outcome.

I had problems getting my oncologist to realise this and my PSA was 0.7 a month before i started HT with a doubling time of 2.5 months. It did come down to 0.1 very quickly after i started HT.

Second opinion?

 

Ido4

User
Posted 05 Feb 2019 at 13:48
Sorry to read this Bri, especially as you worry so much. I think the three rises and 0.2 only apply to SRT which you have already had ?? So now some Onco let you hit 10 or more before starting HT and or Chemo which is your next progression. I’d maybe suggest you sit back and let psa rise to 3 or more then ask or think about funding PET scan ??

I think in any case a 3 month wait will do you no harm mate. Best wishes

If life gives you lemons , then make lemonade

User
Posted 05 Feb 2019 at 13:57

Thanks Bollinge, that research is basically what the PCUK nurse said. Although that success rate of 50% below 1 was for men >0.5. At my PSA there is only 25% chance or maybe lower.

Thanks Ian, I’m not sure I am at 2nd opinion point yet as I am still below 0.2 so suspect a 2nd opinion would say test again in 3 months?? Don’t forget I have had radical treatment and salvage treatment already so start time of treatment is probably slightly different. Although I would appreciate views on that

Bri

Edited by member 05 Feb 2019 at 13:57  | Reason: Not specified

User
Posted 05 Feb 2019 at 16:59

Sorry Bri, It had slipped my mind you already had SRT. I'll blame cognitive decline due to HT😬

Chris J’s answers seems sensible.

Ian

Ido4

User
Posted 05 Feb 2019 at 18:10

No probs. Cheers Ian 👍

 
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