First PSA after RP

[Paulo1968]

My first PSA after surgery (3 months) came at 0,04.

My urologist doctor said it was good and not to worry. I had hoped for a lower mark.

Any different view?

[Tall_Allen]

Is that the lowest that lab reports? Was there a "<" in front? What were your pathology results?

[Paulo1968 in reply to Tall_Allen]

I didn’t have a chance to speak with the doctor yet. I got the result and texted him. He replied saying it was good. I didn’t see any < in front of this analysis report.

The pathology report came as pt2, clean all around except 1 positive surgical margin of 1 mm in the right apex. The doctor diminished this fact, which worried me actually. Also 18 lymph nodes were cleaned.

[Tall_Allen in reply to Paulo1968]

You should look for a clear pattern of PSA progression before discussing salvage radiation. That means either two consecutive rises over 0.03 or a change in PSA greater than 0.5 ng/ml/yr. If you can get it in Portugal, a Decipher test may help you decide.

[Paulo1968 in reply to Tall_Allen]

Thanks

What is a decipher test?

[Tall_Allen in reply to Paulo1968]

It's a genomic test (from Genome Dx) they can do on your prostate tissue. It tells you how advanced your cancer was, and gives you the probability of metastases within 10 years.

[Paulo1968 in reply to Tall_Allen]

Ok, Thanks.

I will ask my doctor next Monday.

This is not the Gleason score, is it? Mine was 8.

[Tall_Allen in reply to Paulo1968]

No, not the Gleason score.

[Lombardi24]

No Paulo. 0.04 is considered undetectable. That's great! If it stays there and doesn't move they may have gotten it before it had a chance to metastasize. If so...you may be ok. Mine was 2.37 post surgerydue to mets on my pelvis. Hoping the best for you. 👍👍🤤

[Lombardi24 in reply to Lombardi24]

Oops...not sure how that emoji got there.

[Paulo1968 in reply to Lombardi24]

No worry 😀

[Paulo1968 in reply to Lombardi24]

Thanks Bill.

I have doctor appointment on July the 16th. I will check what else he is telling me.

And how are you?

[Lombardi24 in reply to Paulo1968]

Am good right now. Lynparza med is dropping my PSA. So...fingers crossed.

[Paulo1968 in reply to Lombardi24]

Hope the best to you too.

[Lombardi24 in reply to Paulo1968]

Thx, Paulo.

[Cubbiesfan]

Glad you came through surgery okay.

My lab reports also showed positive margins. At the time my urologist (in Chicago) consulted a “tumor board”, and the group advised watchful waiting. I have no idea whether tumor boards are used in Portugal.

Six years later, my PSA had risen to the point where I needed radiation, and here’s where the positive margin was a good thing. Since the radiation oncologist knew exactly where the positive margin was, he could aim the radiation beam to the specific spot and reduce the number of total treatments. I’ve had undetectable PSA levels for one year since then.

I wish you all the best!

[Paulo1968 in reply to Cubbiesfan]

Thanks Mark for the reply.

I believe they call it here multi-disciplinary meeting.

I am going to let the doctor tell me next Monday what is his advise. I have a bunch of questions though.

What were your levels of PSA after surgery?

Wish you the best too.

[Cubbiesfan in reply to Paulo1968]

The lab my urologist used showed PSA<0.01 which meant undetectable. He emphasized different labs had different sensitivities for determining whether PSA was undetectable. He insisted I only use one lab for consistent results.

Six years later PSA=0.07. I began external radiation 2 months later.

I saw my radiation oncologist yesterday. He was so happy with my undetectable PSA after one year, he advised I return once annually with him, but to follow up with the urologist at least every six months.

Paulo, there’s no substitute for a face-to-face talk with your doctor. I hope for all good news on Monday!

[Paulo1968 in reply to Cubbiesfan]

Good news Mark. Hope it stays that way for very long 😀

Thanks for your encouraging words.

[KansasCouple2]

A lot of the doctor's office equip will not go below .01. There may have been a < in front of it. Everything I've read said results of .04 and below are considered undetectable. Hopefully good news. My first test at 2 1/2 months was <.04. Repeat done 2 weeks later at hospital lab was 0.0

[Paulo1968 in reply to KansasCouple2]

Hi and thanks for replying.

I didn’t see any < before the mark, but the number was sharp 0,04.

0.04 rounded to decimals is in fact 0.0 😊

I am hoping for the better as doctor says, but I am investigating and reading and capturing other’s view, so the more we know sometimes isn’t the better for the mind.

Wish you the best.

[KansasCouple2]

There was a typo in my response. It should have read doctors office equip won't read below .04, not .01.

I see my surgeon for follow-up in morning. Hoping he can explain why now 3 months later I'm getting sharp pain trying to sit up in the middle of the night.

[Paulo1968 in reply to KansasCouple2]

The doctor has to tell you what that pain is. I felt that in the first week...

A question still, why did you get a second test in hospital lab afer 2 weeks?

Thanks

[TimCo]

I agree with your doc you are doing great!

Take care and continued full rapid recovery.

[Paulo1968 in reply to TimCo]

Thanks Tim for the encouraging words 😀

[PatrickGA]

Since it was mentioned up above, I think it's worthwhile to add a clarification about the Decipher test. It IS very useful (but may not be widely available), and was a big factor in supporting my urologist's decision to have me undergo both ADT (Lupron for 13 months) and salvage radiation for 8 weeks. When my first PSA test after surgery (about 7 weeks post-op) came back as .2, he ordered the Decipher test. Three months later, the PSA had risen to .6. I started ADT the day of that urology appointment where I learned the second PSA result, and then started radiation about 7 weeks later.

But here is the point I want to make about the Decipher test. As I'm reading here off the Decipher lab result, what it predicts is metastasis within 5 years, and death from prostate cancer within 10 years. The result score is on a scale from zero to one, with anything above .60 considered High Risk. Mine came back as .67. And the lab report further breaks down the test score, in my case, to a 14% risk of metastasis in 5 years, and a 10.1% risk of "10 year prostate cancer specific mortality." Neither of those percentages seemed very high to me, but I guess those taken together produced the "high risk" valuation. And when you combine that with both of the surprisingly high post-op PSA numbers, it made sense to be aggressive about ADT and radiation. And I'm fine with the timing of both of those treatments. And they appear to have worked. My PSA went down to just .1 after only 6 weeks of ADT, which was before radiation. The next PSA, 3 months later, was undetectable (<0.01), where it's been ever since.

The thing about Decipher is that it has to be ordered by the surgeon very soon after surgery, since they test tissue from the tumor and prostate that was removed. My urologist was also my surgeon at a large urban medical center hospital, so having access to the tissue samples was probably not a big deal.

[Paulo1968 in reply to PatrickGA]

Thank you very much Patrick for your explanation.

I will ask my doctor next Monday. Hope there is still time and this is available to be tested here where I live.

[SpenceNYC]

I am also interested in the answer to your question. After a year at .01 mine "jumped" to .36. My dr has ordered an MRI-PET scan. I was told that it is probably nothing, but that gives me little comfort right now.

[Paulo1968]

I had the appointment with my doctor which is the 3 months' check after surgery.

First, he told me that the Decipher test is not done in this hospital yet. Pitty ...

He explained me then that as hospital protocol they start doing anything only if PSA rises till 0,1. And this is already lower than the 0,2 mark which is consider recurrence by international standards. Till 0,1 it is considered to be indectatable. Also the 1 mm margin in the right apex, based on a swedish study, they consider only statistical relevant if the positive margin is above 3 mm.

Last, considering my situation included in a startistic they follow for Gleason 7 (4+3) and higher, a PT2 has 1/3 chances of nothing happening after surgery, so this is a high chance enough for not starting adjuvant treatment unless there is recurrence.

He sort of reasured me I am fine and I shouldn't worry. In October I am doing my second PSA test. I must say this does not comfort me enough, but I need to get on living without fear and need to put this over my shoulders for a few months.