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Is my Dad's cancer back?

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User
Posted 02 Jul 2019 at 22:03
John's has gone up to 0.11 and back down again without any evidence of active cancer - plus the ulteasensitive test has been dropped in many areas as it is now thought to be too unreliable so it seems odd for the medics to suggest that your dad might have a problem. He may just be settling into whatever is his new normal.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Jul 2019 at 07:17

Thanks Lyn.

We can of course only go on what the professionals have told us, so as it stands we're waiting for the MRI date and will go from there.

I would be over the moon if what you say was right in regards to my Dad settling into his new 'normal', but this isn't what we've been told so I guess we'll have to wait and see. We should know more very soon hopefully.

User
Posted 04 Jul 2019 at 11:35

Dad's been contacted by his consultant, he's now booked in for the MRI a week Sunday (14/07/19).

He's got a further PSA test in around 5 weeks and is booked in with his consultant for decision on next steps on 30/08/19.

User
Posted 30 Aug 2019 at 14:45

Hi all

Update regarding my Dad as some of you have expressed an interest and have asked to know what happens.

Dad has been to see the oncologist earlier today. I wasn't there myself but I've just got off the phone to my Dad and they have advised him the following:

  • PSA levels have now risen to 0.06. This is an increase of 300% over a 12 month period.

  • The level 0.06 is of course not an issue itself as it’s still low, but the rate of the increase is the concern.

  • Hormone therapy doesn’t need to be considered at the moment.

  • A further blood test will be done in 3 months time to check and monitor the rate of the increase in PSA levels. He will then have a phone consultation once he's got these results.

  • The oncologist won’t see Dad again until his levels are at 1.0.

  • The MRI scan was ‘clear’, ie it only showed some scar tissue around the prostate, it didn’t show anything else (we didn’t think it would anyway due to the low PSA levels).

  • The oncologist has stated there is something there somewhere, we just don’t know where and as a result of not being able to see it they cannot cure it.

  • The oncologist advised there is a possibility the cancer has spread to the bones / lymph nodes but they can’t be certain because they can’t see anything.

  • Dad can pay for a scan (think it costs up to £4000 and is only available at 2 hospitals) to try and find out exactly where it is, but this new scan is still in an experimental phase at the moment and therefore they don't know how effective it is / isn't.

It seems as though we are simply waiting / monitoring results again as we have been for quite some time. The only real concerning thing for my Dad is that the oncologist herself mentioned she thinks there's a possibility it has spread.

Not really a huge update to give but that's where we are with it.

User
Posted 30 Aug 2019 at 15:16
Hi Sam

Thanks for the update. Pretty much what we expected I guess. There is a possibility that the PSA could bounce around the low numbers for some years to come with no intervention needed

Fingers crossed that is the case

Bri

User
Posted 30 Aug 2019 at 16:29

Seems crazy that a medic would give such dire forecasts with a PSA that has only gone from 0.02 to 0.06 ... thousands of men all over the country would be having further treatment if that was a significant number!

Edited by member 30 Aug 2019 at 20:24  | Reason: Not specified

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

User
Posted 30 Aug 2019 at 16:58
As regards scans, the best one that I know of that is available in the UK at present is the 68 Gallium PSMA which can show spread to bones and lymph nodes. However, the chances of it showing cancer cells with such a low as your Dad's PSA are extremely slim. Furthermore, this scan does not work for between 5 an 10% of men. There are at least 4 centres in London that can do it and prices were circa £2600 when I last checked. (The Royal Marsden gave a rather higher figure.) Some of these facilities offer the scan on the NHS but I think it very unlikely that the scan would be offered within the NHS with such a low PSA.

There is a better scan on trial in the USA, Canada and a few other places but not yet in the UK to the best of my knowledge. It's called 18F DCFPyl PET/CT but this too is unlikely to show cancer cells with such a low PSA. There are a few other scans and variations on present ones being developed. If indeed there are only two centres doing a scan that Dad talks of, we would be interested to know the name of the scan and where it is available, as all this sort of information adds to our collective knowledge and can prove useful.

Meanwhile, it's really a matter of monitoring PSA (3 monthly intervals seems good to me) to establish rate of rise if/until it reaches the 1. at which point his Oncologist wants to see him again.

Barry
User
Posted 30 Aug 2019 at 20:55

Originally Posted by: Online Community Member
Hi Sam
Thanks for the update. Pretty much what we expected I guess. There is a possibility that the PSA could bounce around the low numbers for some years to come with no intervention needed

Fingers crossed that is the case

Bri

Thanks Bri, fingers crossed!

User
Posted 30 Aug 2019 at 20:57

Originally Posted by: Online Community Member

Seems crazy that a medic would give such dire forecasts with a PSA that has only gone from 0.02 to 0.06 ... thousands of men all over the country would be having further treatment if that was a significant number!

I don’t know what to say Lyn, I can only go off what I’ve been told by my Dad as I wasn’t present when he spoke to the oncologist. Knowing my Dad, he probably asked if there’s a chance if it’s spread and they’ve said yes, but I can’t say for certain.

All I know is that we’re monitoring every 3 months now until he gets to 1.0.

User
Posted 30 Aug 2019 at 21:01

Originally Posted by: Online Community Member
As regards scans, the best one that I know of that is available in the UK at present is the 68 Gallium PSMA which can show spread to bones and lymph nodes. However, the chances of it showing cancer cells with such a low as your Dad's PSA are extremely slim. Furthermore, this scan does not work for between 5 an 10% of men. There are at least 4 centres in London that can do it and prices were circa £2600 when I last checked. (The Royal Marsden gave a rather higher figure.) Some of these facilities offer the scan on the NHS but I think it very unlikely that the scan would be offered within the NHS with such a low PSA.
There is a better scan on trial in the USA, Canada and a few other places but not yet in the UK to the best of my knowledge. It's called 18F DCFPyl PET/CT but this too is unlikely to show cancer cells with such a low PSA. There are a few other scans and variations on present ones being developed. If indeed there are only two centres doing a scan that Dad talks of, we would be interested to know the name of the scan and where it is available, as all this sort of information adds to our collective knowledge and can prove useful.

Meanwhile, it's really a matter of monitoring PSA (3 monthly intervals seems good to me) to establish rate of rise if/until it reaches the 1. at which point his Oncologist wants to see him again.

Hi Barry

The information above is really helpful, thank you. Without you all on here I’m reliant on listening to only my Dad and / or using Google!

I’m afraid I couldn’t tell you what the name of the scan is that was discussed, although I think he said the two places he was advised it was available was Northampton and London. Not certain though. Sorry I can’t be of more help at the moment (I shall try to find out more when I next see him).

User
Posted 30 Aug 2019 at 22:40
I thought that perhaps it was the Axumin (FACBC) tracer that the onco was referring to, but that is / was available at 6 UK hospitals as part of a trial.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2019 at 12:21

I’ll try to find out a bit more when I next see my Dad, Lyn. As it stands I really don’t know what the name of the supposed scan is.

User
Posted 31 Aug 2019 at 12:36
With a bit of luck, it will be years before he gets to 1.0, by which time all these new tracers will have been tried, tested and brought into wide availability. Fingers crossed for you 🤞
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2019 at 14:56

Thank you Lyn 😊

 
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