strange results: I just got my monthly... - Advanced Prostate...

Advanced Prostate Cancer

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strange results

Ahk1 profile image
Ahk1
39 Replies

I just got my monthly PSA and T results. I am not on any ADT medications for about 17 months now or any medications for that matter.

last month results: psa(.11) and T= 700

This month(today): psa(.19) and T=130

I can understand why psa increasing but why T dropped to this level. Is this considered castrate resistance?

Thanks in advance for your thoughts

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Ahk1 profile image
Ahk1
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39 Replies

700 to 130 with no adt ,in one month? Wow ! I’m hoping someone can tell us what that means? How do you feel ?

Ahk1 profile image
Ahk1 in reply to

I feel the same. I wasn’t expecting it to be that low considering I am not on any medications. I just sent a message to my MO and asked for a psma scan. I think no matter what the scan shows, I need to go back on ADT. I hate going back on it obviously.

in reply to Ahk1

It good that you don’t feel worse . I’d think you’d feel a big difference? We all hate adt . We hate pc more . Good luck . I’m hoping it’s a blip.

in reply to Ahk1

I did an orch after two yrs lupron but stayed on a pill adt for over seven years . I stopped the pills 9 months ago . and my docs didn’t want me off it due to my k failure start with pc . Nobody wanted me to go back there again . I know some say monthly psa . I done tri-monthly this entire time . I’m thinking monthly could drive some unwanted stress in me . Plus I hate giving blood . Good luck !

treedown profile image
treedown in reply to

I was reading a list of trials at University of Chicago and TAK700 is on there.

GeorgeGlass profile image
GeorgeGlass in reply to treedown

i thought they stopped doing tak 700, years ago?

treedown profile image
treedown in reply to GeorgeGlass

That was my impression as well which is why I was surprised to see it. It was not a monotherapy trial that much I remember.

CountryJoe profile image
CountryJoe in reply to Ahk1

Why would you go back o. ADT with PSA so low after such a long vacatión? Your thinking seems contradictorio. We go on ADT in order to bring our T down. You want to go back on ADT BECAUSE your T is down?

Ahk1 profile image
Ahk1 in reply to CountryJoe

I am very nervous. It’s not about my T LOW. it’s about psa rising with a one month doubling time. The T is probably a glitch.

Margoto profile image
Margoto in reply to Ahk1

As my husband's doctor stated from day one, cancer cells will adapt and learn to survive and multiply even with low testosterone levels. At that point it is the PSA level and doubling time which becomes most important. Rising PSA means cancer is becoming more active and most likely spreading. Listen to your doctor about ADT.

Ahk1 profile image
Ahk1 in reply to

I also had the T level tested in another lab and it was 550 on 3/15/23. So, I am beginning to think it might be a lab error?

in reply to Ahk1

It sure could be ! Next test will tell ! Good luck finding out!

treedown profile image
treedown

Thats weird. I wouldn't worry about it much until the next test. It may be a test error. Are you sure they are both total T as opposed to free T or something like that?

Ahk1 profile image
Ahk1 in reply to treedown

it says total on the test.

treedown profile image
treedown in reply to Ahk1

Almost has to be a test error. Whens your next PSA test 1 or 3 months? Get T done again then.

in reply to treedown

my best mo wanted me to get all scans and testing done at the same place every time . More chance of accuracy .

in reply to treedown

How are you feeling?

Ahk1 profile image
Ahk1 in reply to

I am feeling good. No issues so far.

in reply to Ahk1

That’s good! 🌵

Margoto profile image
Margoto in reply to

You don't actually "feel" anything until you are much worse.

in reply to Margoto

That’s not good! 😔

Ahk1 profile image
Ahk1 in reply to Margoto

What do you mean by “ much worse”?

in reply to Ahk1

I mean if and when the cancer progresses because treatment stops working. Then you have pain...as the cancer gets worse. Not just the usual discomfort from treatment side effects. But that's after exhausting the many treatment options available. It's great you are feeling good, a good sign!

Ahk1 profile image
Ahk1 in reply to

thanks. It was a lab error. The new results is 704

Rocketman1960 profile image
Rocketman1960

Any time we get weird data the first thing to do is retest. Labs are not perfect.

NecessarilySo profile image
NecessarilySo

Just a thought. PSA can rise due to physical stimulation such as a DRE. Maybe the T=700 was high due to something like that.

Margoto profile image
Margoto in reply to NecessarilySo

Doctors know better than to test PSA after a DRE

Don_1213 profile image
Don_1213

I'll second and third getting a retest done. I could go on and on about Quest labs- one of the two big labs in NJ area. "Never blame something on malice that which can be explained by incompetence" should be their motto.

I've posted before about the two PSA reads done, on samples taken at the same blood draw, obviously the same day, minutes apart, processed in the same lab by the same technician, and giving results that were significantly different (more than 30% different.) Any time I see significant changes in a test result - it's time to start looking for what they screwed up, not what caused the change.

Margoto profile image
Margoto in reply to Don_1213

That's why doctors say wait for three months then test again. Accuracy and doubling time are both important.

Rocketman1960 profile image
Rocketman1960 in reply to Don_1213

I have experienced a 10% difference in readings on the same blood taken the same day requested by two different doctors. More important than the actual number is the trend in numbers. The PSA velocity rules the day.

Don_1213 profile image
Don_1213 in reply to Rocketman1960

Yes - the trend is the most important thing. Mine has a velocity of zero, up or down. It wobbles between 0.17-0.21, the most prevalent ones have been in the 0.20 range for over 18 months now.

Ahk1 profile image
Ahk1 in reply to Don_1213

wow. You are lucky that it stayed.

anonymoose2 profile image
anonymoose2

Test error, My doctor had me do another blood draw when that happened to me. That happened to me only once in almost 6 years.

lowT163 profile image
lowT163

Screwed up test. Ive never had one that far off but 100 points has happened. Never gone down dramatically.

MateoBeach profile image
MateoBeach

In 2020 you report pelvic and abdomen LNs on PSMA scan. You went on Firmagon ADT in Nov 2020 for one year. I am presuming that you had SBRT to the LNs at that time ( You don’t mention it in your profile.) Now, your testosterone recovered band your PSA is again rising.

This represents remaining sites of metastatic disease. It does not mean castrate resistance as it is not rising while on ADT with total testosterone of less than 50 ng/dL. The majority (2/3) of those with LN oligomets treated by SBRT have recurrence in nearby or distant sites within 2 years, unfortunately. If your PSA continues to rise at this rate it will be above 0.25 by next month and you could get a repeat PSMA scan to see if there is something appropriate for further treatment. Or if presumed to be more widely metastatic then systemic treatment, including ADT, may be needed.

Since you are not yet confirmably mCRPC, you will not qualify for some treatments including Provenge or Pluvicto. Lu177-PSMA treatments could be undertaken in Europe, Australia or India (self-pay). These appear to work better in LN only disease and with low tumor burden.

I have no idea why your T level dropped this month. Check what Free-T did.

Ahk1 profile image
Ahk1 in reply to MateoBeach

your analysis is correct. I was not offered radiation before I started ADT in 2020. I don’t think I am castrate resistant. It must be a lab error or something else but I have no idea. I contacted my MO and they told me they will do the psma before my next appointment in early June. I understand that ADT is in my near future. I had a defused disease in the LN in abdomen and pelvic that is probably why they never offered SBRT of some sort. The question is: at what level of psa should I resume ADT?

Margoto profile image
Margoto in reply to Ahk1

That's what doctors are for.

Ahk1 profile image
Ahk1 in reply to MateoBeach

it was a test error. The portal results got updated to 704.

.19 is probably not high enough to scan yet. Try again next month, maybe it will go down. Its so hard to rely on one or two PSA tests. And the T fluctuating; I know this is a an unusual theory, but I wonder if it is the body trying to regulate itself against the rising PSA. and perhaps next month will be lower. I know that sounds like an unusual idea.

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