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User
Posted 21 Mar 2019 at 13:19

Hi,


I was diagnosed with stage 4, gleason 68, with mets to the pubic bone and lymph nodes in November 2015. I opted for the chemotherapy as part of my initial treatment and responded very well, but this last year my PSA which has never been below 1.0 has slowly risen to 1.9 I'm still on prostat every three months but my oncologist isn't keen on giving me a new scan, my last was in June 2016 after my chemo and showed no sign of disease. My question is is this normal, and can I demand a new scan I'm keen to get on top of it if it is recurring as you can imagine. Thanks in advance.


Stay Strong

User
Posted 09 Jun 2019 at 12:02
With metastatic cancer such as yours, it's not the PSA level that the oncologist will be looking at as much as the rate at which the PSA is increasing - the "doubling time". As long as it's taking a year or so to double, your oncologist will probably continue on your current treatment, because each drug is only effective for a certain amount of time and he'll want to get as much time as possible out of your current treatment before switching onto something else.

Best wishes,

Chris
User
Posted 21 Mar 2019 at 16:40

Hi Mick


I can imagine your worry but i think you have to realise that a PSA that low can be regarded as normal. I’d expect them only to consider recurrence if you had a few results showing an upwards trajectory and then they would probably order a scan .At such a low PSA there would be nothing to see I imagine, the guys who had PET scans may say differently I know. John has had many upwards results before changes in treatments and new scans and that has always been based on new pain or symptoms like retention etc. I honestly suspect that’s why you aren't getting what you want. Oncologists generally act on three or more PSA upward changes and take into account the rate of change (the doubling time) as this is indicative of trouble afoot. One thing I have learnt in our long journey with this disease is to have treatment at the right time, not too early and not too late. My husband has survived more than eight years using this as a basis, having only had chemo last year and now finally on Enzalutimide (and doing ok). In all these years his PSA has risen slowly, quickly, slowly, quickly, depending on some mysterious thing I cannot define. He is a Gleason 10 with spread on diagnosis. He has only had treatment when he had symptoms rather than PSA rises alone. I would like to think your oncologist could have explained his thinking much better than I can, but i suspect its a long  these lines. 


Have you got a specialist nurse you can speak to?


Devonmaid

User
Posted 21 Mar 2019 at 17:32

Hi Mick,


My PSA results have been doubling and initially my oncologist said she wouldn’t do anything unless it went over 2, however she arranged for me to have a MRI which  was  followed by an enchanced one.  both showed no recurrence.  At my last appointment she said she would arrange a PET scan if it continues to rise.


Have a look at my profile for my numbers.


Arthur

User
Posted 09 Jun 2019 at 13:34
Hi Mick, did they do a testosterone check at your last PSA blood test?
This will indicate if the prostap is still working effectively.
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User
Posted 21 Mar 2019 at 16:40

Hi Mick


I can imagine your worry but i think you have to realise that a PSA that low can be regarded as normal. I’d expect them only to consider recurrence if you had a few results showing an upwards trajectory and then they would probably order a scan .At such a low PSA there would be nothing to see I imagine, the guys who had PET scans may say differently I know. John has had many upwards results before changes in treatments and new scans and that has always been based on new pain or symptoms like retention etc. I honestly suspect that’s why you aren't getting what you want. Oncologists generally act on three or more PSA upward changes and take into account the rate of change (the doubling time) as this is indicative of trouble afoot. One thing I have learnt in our long journey with this disease is to have treatment at the right time, not too early and not too late. My husband has survived more than eight years using this as a basis, having only had chemo last year and now finally on Enzalutimide (and doing ok). In all these years his PSA has risen slowly, quickly, slowly, quickly, depending on some mysterious thing I cannot define. He is a Gleason 10 with spread on diagnosis. He has only had treatment when he had symptoms rather than PSA rises alone. I would like to think your oncologist could have explained his thinking much better than I can, but i suspect its a long  these lines. 


Have you got a specialist nurse you can speak to?


Devonmaid

User
Posted 21 Mar 2019 at 17:32

Hi Mick,


My PSA results have been doubling and initially my oncologist said she wouldn’t do anything unless it went over 2, however she arranged for me to have a MRI which  was  followed by an enchanced one.  both showed no recurrence.  At my last appointment she said she would arrange a PET scan if it continues to rise.


Have a look at my profile for my numbers.


Arthur

User
Posted 21 Mar 2019 at 18:33
Mick,

I have also been going strong for 3.5 years with micro mets. I am currentlly on Abiraterone and PSA remains at 1.2.

I have had 3 PSMA Pet Scans at various times to enable us to locate where the micro mets are.

My Onco has said that he will only carry out a further PSMA Pet Scan when and if my PSA gets to 10, as at the moment there is unlikely to be much activity due to the low PSA count.

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 22 Mar 2019 at 10:54
Thank you, I think I needed that bit of perspective, I’ve had a bit of a chest infection and this has given me too much time to obsess. I shall be back in the gym next week and no doubt will be feeling more positive, that said I don’t think I will ever get used to the wait for my three months blood result, on one level it’s only a number but it has the power to cause so much angst.
Stay Strong.
User
Posted 09 Jun 2019 at 11:52
Well, here we go, my psa has now risen to 2.2 I knew this would happen, I’ve had a good run with the prostat just got to wait and see what my oncologist says.
User
Posted 09 Jun 2019 at 12:02
With metastatic cancer such as yours, it's not the PSA level that the oncologist will be looking at as much as the rate at which the PSA is increasing - the "doubling time". As long as it's taking a year or so to double, your oncologist will probably continue on your current treatment, because each drug is only effective for a certain amount of time and he'll want to get as much time as possible out of your current treatment before switching onto something else.

Best wishes,

Chris
User
Posted 09 Jun 2019 at 13:34
Hi Mick, did they do a testosterone check at your last PSA blood test?
This will indicate if the prostap is still working effectively.
User
Posted 09 Jun 2019 at 14:22
I cannot find any reference to testosterone in my blood results so I’m assuming it’s not being tested, I will be asking about it this week though. Looking back at my test results my psa was 1.1 in August 2016, so has taken nearly 3 years to double which is good.
Still I’d be lying if I said I wasn’t concerned.
 
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