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First PSA post RALP

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User
Posted 29 Nov 2023 at 13:50

Hello, 

This is my first post here, but I have been following this forum every since my husband (49) started to experience issues with increased PSA.

After year and a half of waiting tests and slowly rising PSA, he had a biopsy in June this year which found 3+4, with almost complete involvement of right side of the prostate, but with no evidence of spread.

He had the NeuroSAFE surgery 2 months ago, one side nerve sparing procedure, because they found cancer cells at the resection site during frozen section analysis. Fortunately, removed nerves were clean.

Final path report was good, Gleason 3+4 (35% pattern 4), pT2c, R0, SV0, N0 (0 out of 5 lymph nodes removed).

His PSA pre surgery was 4.6 and today is 0.01.

I'm worried because there is no < sign in front of the value. He is very happy with the results, but I can't relax.

His follow up appointment is this Friday, so we'll see what the urologist will say. 

I would be very grateful for any insights from this great community that helped me a lot in this period.

We are from outside of UK, BTW and English is not my native language so excuse me in advance for any mistakes.

Thank you!

 

User
Posted 30 Nov 2023 at 15:01
If it helps my results following RP were

PSA at 3 months 0.014

PSA at 6 months 0.012

PSA at 12 months 0.013

PSA at 18 months 0.011

PSA at 24 months <0.01

PSA at 30 months <0.01

Next one due in a few weeks fingers crossed :-)

User
Posted 30 Dec 2023 at 14:51

Hi,

Just a quick follow up, a PSA test after one month now shows <0.01. He had a yearly phisical so they checked PSA too.

So happy right now! Hope it continues to show the same result.

Thank you all!

User
Posted 29 Nov 2023 at 14:21

I don't think you should be worrying at the moment - that sounds quite normal. There are probably some non-cancerous prostate cells left, both as a result of the nerve sparing, and also because prostate cells diffuse into the pelvic floor at the apex (bottom of the prostate) without a sharp boundary.

User
Posted 29 Nov 2023 at 15:03

Hi, 

I'm sure the result will be <0.01, which I believe is classed as undetectable .The best news you can get.

You state the cancer staging was pT2c. I believe that means cancer had been found in both prostate lobes not just the righthandside.

Best wishes

Adrian

Edited by member 29 Nov 2023 at 16:16  | Reason: Typo

User
Posted 30 Nov 2023 at 08:12
No less than is never good news after RP. The subsequent tests will tell you if it's bad news.

If it stays the same or drops then that is good news, if it increases then it's bad news.

Until your next test at 3 months there is no point worrying about it, I am afraid PSA anxiety will now be a part of your life and you will need to develop a coping mechanism.

User
Posted 28 Feb 2024 at 10:11

I still get discomfort in my pelvic floor 4yrs post RARP 3+4 T2c. Mine mostly started after the biopsy as I think it can disrupt an area which has a lot of nerves etc It gets better but still sore/tender. On the PSA front try and stick with the same lab as moving that can introduce more variables in the numbers in terms of assay used and calibration. I also getting a cope of the blood report in my hands gives reassurance as negates the scope of reporting error like missing < signs etc 🤪

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User
Posted 29 Nov 2023 at 14:21

I don't think you should be worrying at the moment - that sounds quite normal. There are probably some non-cancerous prostate cells left, both as a result of the nerve sparing, and also because prostate cells diffuse into the pelvic floor at the apex (bottom of the prostate) without a sharp boundary.

User
Posted 29 Nov 2023 at 15:03

Hi, 

I'm sure the result will be <0.01, which I believe is classed as undetectable .The best news you can get.

You state the cancer staging was pT2c. I believe that means cancer had been found in both prostate lobes not just the righthandside.

Best wishes

Adrian

Edited by member 29 Nov 2023 at 16:16  | Reason: Typo

User
Posted 29 Nov 2023 at 16:19

Thank you for the replies!

He doesn't have <0.01, but just 0.01. This is what is worrying me, missing "less than" sign.

Yes, you are correct, he had the cancer in both lobes, even though, all the positive samples from the biopsy were from the right side. The left side had some cancer that was found in the post op pathology examination, but the majority was in the right side.

Edited by member 29 Nov 2023 at 16:19  | Reason: Not specified

User
Posted 29 Nov 2023 at 17:19

Hi,

How did your husband get his psa result? The reason why I ask is the if you are getting it via your GP they may have forgotten / omitted the ( <) .  I found this out when after a year of checking my result via 'GP patient access app' which gave the results as 0.01 but then checking the actual results via the NHS it turns out it was < 0.01 all along.

As others have said try not to worry at this very early stage.

All the best

User
Posted 29 Nov 2023 at 17:23

It was an original lab report

User
Posted 29 Nov 2023 at 20:57
Where I am the lowest PSA reported is 0.05. So here your husband would be <0.05, i.e. undetectable.

I hope he stays that way.

User
Posted 30 Nov 2023 at 08:12
No less than is never good news after RP. The subsequent tests will tell you if it's bad news.

If it stays the same or drops then that is good news, if it increases then it's bad news.

Until your next test at 3 months there is no point worrying about it, I am afraid PSA anxiety will now be a part of your life and you will need to develop a coping mechanism.

User
Posted 30 Nov 2023 at 15:01
If it helps my results following RP were

PSA at 3 months 0.014

PSA at 6 months 0.012

PSA at 12 months 0.013

PSA at 18 months 0.011

PSA at 24 months <0.01

PSA at 30 months <0.01

Next one due in a few weeks fingers crossed :-)

User
Posted 30 Nov 2023 at 16:03

Thank you for this, it really put my mind at ease (for now 🙂).

Hope you get excellent news in a few weeks!

User
Posted 30 Nov 2023 at 23:25
I think you are worrying unnecessarily - it might just be that they don't use the < in your country!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Dec 2023 at 14:51

Hi,

Just a quick follow up, a PSA test after one month now shows <0.01. He had a yearly phisical so they checked PSA too.

So happy right now! Hope it continues to show the same result.

Thank you all!

User
Posted 20 Feb 2024 at 15:19

Hi,

unfortunately new PSA test shows 0,03, 5 months after surgery.

Not sure if it matters, but each of the tree measurements was done at a different lab.

Can we already talk about BCR? He has an appointment with urologist next Friday, I'll go out of my mind until then :( 

 

Thank you in advance for any feedback you can give me.

 

 

User
Posted 20 Feb 2024 at 15:38

Hi,

My PSA post RALP (Oct 22)

0.03, 0.04, 0.01, 0.01, 0.01, 0.01 then 0.04 (last month) hopefully just a blip. Re test in another 2 months.

User
Posted 20 Feb 2024 at 23:13

Originally Posted by: Online Community Member

Hi,

unfortunately new PSA test shows 0,03, 5 months after surgery.

Not sure if it matters, but each of the tree measurements was done at a different lab.

Can we already talk about BCR? He has an appointment with urologist next Friday, I'll go out of my mind until then :( 

Thank you in advance for any feedback you can give me.

No, you are nowhere near needing to worry about BCR yet. It could be normal variation, machine noise or each lab having a different assay. Why have the PSA tests been done at three different labs? It would be really useful going forward to have all PSA samples tested at the same place so that you can get a reliable picture of what is going on. 

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

User
Posted 21 Feb 2024 at 10:25
Thank you all for the input.

Reason for different labs is that he has changed his GP and with that he changed the lab.

The one measurement of <0.01, a month and a half ago was performed at the private clinic, as part of the yearly physical.

Going forward he'll stick with the one lab, but nevertheless, it seems like quite a jump from less than 0.01 to 0.03, regardless of the lab.

I'll try to think positive, urologist did warn him earlier that such oscillations are possible, but I immediately think of the worst...

User
Posted 26 Feb 2024 at 10:30

Hi,

quick update - I told him to go make anther test to the same clinic where he had the <0.01 again to have two comparable results, and it came back again <0.01.

I guess it really depends on the machine.

On the different topic, has anybody had any experience with the constant pelvic pain few months after prostatectomy? He says that it feels like a spasm, that sometimes gets better, but mostly is constantly present. He had an ultrasound, all is clear, all blood tests are clear. Any idea what that might be? I was thinking that it's maybe some muscle inflammation because of how different the urinary system looks like now that the prostate is out.

He has no incontinence from day 1, but he did have an UTI about 2 months after the surgery.

 

User
Posted 28 Feb 2024 at 10:11

I still get discomfort in my pelvic floor 4yrs post RARP 3+4 T2c. Mine mostly started after the biopsy as I think it can disrupt an area which has a lot of nerves etc It gets better but still sore/tender. On the PSA front try and stick with the same lab as moving that can introduce more variables in the numbers in terms of assay used and calibration. I also getting a cope of the blood report in my hands gives reassurance as negates the scope of reporting error like missing < signs etc 🤪

 
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