Optimal testing regimen

[Purple-Bike]

With a PCa with aggressive features (GS9,low-PSA,intraductal,BRCA2+) apparently senescent for the time being, I need an aggressive monitoring regimen.

Shortly meeting a doctor at an oncology department, I will as the most important tests ask for the following four, preferably every two months (CTC count every 3-4 months).

1 Bone-specific ALP. Total ALP and bone-specific ALP went in volatile opposite directions when I tested both on two occasions, because of changes in ASAT and ALAT even as the latter were well within normal values.

2 LDH

3 High-sensitive PSA. With my cancer´s features, PSA is less of a trustworthy marker, at the same time being low PSA I imagine high-sensitive is needed for the small changes that may occur. Now less than 0.1 with a non-sensitive PSA test.

4 CTC circulating tumor cell count (did it once with Cell Search technology, will change to Biocept and/or ISET as these are more sensitive)

If this goes down well with doc I will add the following, as second level importance, perhaps they are enough to do every six months (nr 10 more often, monitoring an attempt to improve the lymphocyte count):

5 Testosterone Less than 0.1 nmol/L on every test done since January, after ADT kicked in. I am medicating with only transdermal estrogen. Or is testing for T superfluous? I miss seeing it on the list of at least one Forum member who has posted his list of regular tests to be done.

6 Hemoglobin. Am now 15 % below the lowest value of the reference range, which is also true for red blood cell count and EVF so I believe hemoglobin will be a good marker for those two also. Pre ADT all three were just above the lowest value of the ref range so I believe it is ADT that has caused a roughly 20 % drop.

7 Albumin. I am at 3.7 up from 3.1 after recovering from a severe infection caused by radiation therapy; it was 4.1 before dx

8 Calcium (at the border of the low of the reference range, and slightly down possibly because of zinc supplementation)

9 High-sensitive CRP. Am at less than 1; had 0.16 when I took a high-sensitive last time. I imagine, but am not sure, that spreading cancer could cause an increase shown only with high-sensitivity test if it is around 0.16 again now.

10 Complete white blood cell count – leukocytes with lymphocytes, neutrophils, monocytes (eosinophils and basophils seem less important, given the values I have). Of the three ratios to aim for of different white blood cell markers given on this forum, I gravely miss the desired ratio for two: Platelet to lymphocyte and lymphocyte to monocyte ratios, both because my lymphocyte value is so poor, at 0.6 ref range 1.1 – 3.5. If doc is really approachable it´s the first time I meet her and visit this clinic, I will ask for a test differentiating the different types of lymphocytes (B-cells,T-cells,NK cells).

Finally, I will ask for a FDG-PET scan, to see if there could be cancer not shown by my PSMA-PET scan in May when a single met in my iliac bone was confirmed and zapped. I got the advice on this forum that low-PSA type PCa sometimes does not express PSMA.

Another PSMA-PET scan to be done if/when tests show cancer starting to progress.

Any comments would be appreciated - is there any test I should add, any test that can be considered over-kill or less relevant I don´t want to tax the goodwill of doc.....

[GP24]

To detect anything with an FDG PET/CT you will need a PSA value of at least 10 ng/ml. Question is, what therapy do you want to begin with if your extensive testing results in an indication.

[Purple-Bike in reply to GP24]

Thanks, I didn´t know that.What therapy to add to ADT: I would reflect on abiraterone + docetaxel, or PARP inhibitor + platinumbased therapy (e.g. carboplatin) which hold particular promise for those with BRCA2+.

[GP24 in reply to Purple-Bike]

I would try to live with as few side effects as possible - therefore I would not add any drug to ADT at the moment. There is no drug that will cure you, it will just stop the tumor to progress for a while.

You could get the met in the right iliac bone radiated with SBRT and destroy it that way. Then you will have no met visible on a PSMA PET/CT.

[Purple-Bike in reply to GP24]

For sure, I will not add any drug unless tests show cancer is rising. The met on iliac bone was radiated so there should have been nothing visible on PSMA-PET after that.

[Tall_Allen]

That sounds like a recipe for anxiety rather than a prudent testing schedule. You should only be taking tests that have a potential to change your therapy. You will generate a LOT of data that have no effect on your treatments.

BTW- you should be taking a LESS sensitive PSA test, not a more sensitive PSA test - small changes in your PSA matter less not more.

[Purple-Bike in reply to Tall_Allen]

Thanks, TA.The first four tests should detect if the cancer is progressing , which will determine additional treatment. Isn't that sound?

[Tall_Allen in reply to Purple-Bike]

ALP, bone ALP, PSA (conventional), and LDH and liver function makes sense, but bone scan/CT should be the definitive one. CTC won't change your treatment.

[Purple-Bike in reply to Tall_Allen]

I can't access the studies right now, but what I recall seeing is that CTC counts are superior to e. g. PSA tests as prognostic factor and valuable for monitoring and treatment decisions based on movement in the count. Is this wrong?You mentioned liver function - does this have a particular importance for PCa?

[Tall_Allen]

If you have mets now your CTC count is probably already over 5. If your current CTCs are <5/7.5ml, an increase to >5 may signal progression, but if you get a bone scan/CT, that's a better indicator. If your current CTCs are >5, I don't know what an increase in CTC count tells you.

Many treatments for PC are toxic to the liver. The liver also goes into overdrive sometimes just from the PC. LDH, AST, ALT and ALP are all good indicators.

[Purple-Bike in reply to Tall_Allen]

TA, I value your critical reply which will make me check the CTC research more in depth than the limited search I have done.

I did the CTC test eight weeks after my only met, confirmed by PSMA-PET/CT, was zapped. The test showed zero detectable CTCs. Together with good readings of other markers, the zero number provided comfort to me in deciding to continue with only ADT, despite the aggressive features of my cancer. Was the test superfluous in your view – was it over-kill? My thinking is that it confirmed that undetected micrometastasis is not that extensive.

I met doc and your previous reply made me go only for the top choices in testing. The secondary level testing will not promote anxiety for me but rather give me control over my health. I will take them up with my general health doctor instead.

[EdBar]

I get an ultra sensitive PSA test along with CBC, CMP and T levels every 4-6 weeks. My PSA was undetectable for over 6 years, just recently it became detectable again although at extremely low levels. I was glad to catch it early, a standard PSA test would not have registered a rise yet. It allowed me to start receiving Provenge treatment next month and plot a course for the future. PSA tests do not generate anxiety for me, I’d rather know what my status is so I can take action. Snuffy Myers originally started me on this regimen of testing and I’ve been doing it ever since. Most important markers are PSA, ALP, and T levels for me.

Ed