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Concerning recent treatment change

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User
Posted 31 Oct 2023 at 09:03

Dear all,

I was diagnosed in 2018 and have been on a surveillance programme ever since. PSA levels have been steady at around the 4.5 mark. However, this summer my PSA levels have risen to 14 over the course of 4 months. This result coming from a test 10 days ago. My results were discussed at last weeks MDT meeting and the cause of this increase was given as a urine infection and the recommendation is to actually decrease the surveillance from 2 monthly to 6 monthly. 

I did have an infection during July, but antibiotics cleared this up quickly. So I am concerned that this is not the reason for my latest result of 14, almost double the result i got during the period when i had the infection. My PSA velocity seems to be significantly high and the PSA doubling time is around the 2 month mark currently. 

I am concerned about what it will increase to when I am next tested in 6 months. Should I be going back to the consultant asking for another MRI or biopsy? Should I go private and get a second opinion? What are your thoughts?

Many thanks

J

User
Posted 31 Oct 2023 at 10:35

You should have a test for infection (urine dip test is probably good enough unless it was prostatitis) a few weeks after it's thought to have cleared. If that's clear, then another PSA test.

I would go back to your CNS or whoever you contact and say 6 months isn't good enough for active surveillance, particularly when you've had a raised PSA which isn't explained.

You could also say (if necessary) that if you aren't getting suitable Active Surveillance, you want to talk about switching to active treatment.

User
Posted 31 Oct 2023 at 09:03

Dear all,

I was diagnosed in 2018 and have been on a surveillance programme ever since. PSA levels have been steady at around the 4.5 mark. However, this summer my PSA levels have risen to 14 over the course of 4 months. This result coming from a test 10 days ago. My results were discussed at last weeks MDT meeting and the cause of this increase was given as a urine infection and the recommendation is to actually decrease the surveillance from 2 monthly to 6 monthly. 

I did have an infection during July, but antibiotics cleared this up quickly. So I am concerned that this is not the reason for my latest result of 14, almost double the result i got during the period when i had the infection. My PSA velocity seems to be significantly high and the PSA doubling time is around the 2 month mark currently. 

I am concerned about what it will increase to when I am next tested in 6 months. Should I be going back to the consultant asking for another MRI or biopsy? Should I go private and get a second opinion? What are your thoughts?

Many thanks

J

User
Posted 31 Oct 2023 at 11:07

It seems a strange decision to extend the testing period when you have just had a big increase. I would not personally be happy blaming an infection that was dealt with 3 months prior to the latest test? I think I would be asking for a retest if it was me.

Hope you get it sorted. As Andy said, you can always say you are no longer happy with AS and want to discuss treatment. I think this is our prerogative when we are on AS. That might at least prompt them into doing more tests?

Ian.

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User
Posted 31 Oct 2023 at 10:35

You should have a test for infection (urine dip test is probably good enough unless it was prostatitis) a few weeks after it's thought to have cleared. If that's clear, then another PSA test.

I would go back to your CNS or whoever you contact and say 6 months isn't good enough for active surveillance, particularly when you've had a raised PSA which isn't explained.

You could also say (if necessary) that if you aren't getting suitable Active Surveillance, you want to talk about switching to active treatment.

User
Posted 31 Oct 2023 at 11:07

It seems a strange decision to extend the testing period when you have just had a big increase. I would not personally be happy blaming an infection that was dealt with 3 months prior to the latest test? I think I would be asking for a retest if it was me.

Hope you get it sorted. As Andy said, you can always say you are no longer happy with AS and want to discuss treatment. I think this is our prerogative when we are on AS. That might at least prompt them into doing more tests?

Ian.

 
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