T level test

[runtrails]

Having my first PSA test since IMRT in a few weeks. (last ADT/Lupron was early February. 90 day. Salvage IMRT Radiation ended Early January. Is there a reason my doc didn't order T level test to coincide with the PSA? Seems like you would track increases or Nadirs etc, having them tested the same time? They did not do a T level test before, so I am not sure what value it was prior to Surgery or Radiation / ADT. Willing to pay out of pocket - but if so, is it just total T that I get? I see a couple of different tests.

[Hidden]

Yup. basic Testosterone test.

[Hidden]

if you had a 90 day shot in February, your T is still going to be at castrate levels, in all likelihood, depending on how long your ADT course was. They are finding a lot of variation in rebound in T between different men. For some of the longer treatments it can take 5 years. and with some men it never comes back at all. others have better luck. But rather than worry about all that, I think mainly the doctor wants to see the PSA, since some feel like <.1 is indicative of a more successful treatment. I guess there are patients whose PSA goes up even though T is castrate. You'll probably be able to feel when your T returns.

[PSAed]

I am just a bit ahead of you. I finished my 2 years of LUPRON June 2022 and my EBRT December 2020.Primary treatment. I had my first blood test post treatment in March 2023 measuring PSA/Testosterone my next test scheduled 6 months time in September. I am a little concerned about the long intervals i.e. six months. My PSA is still undetectable <0.01 and my T is 8.8 nmols/L on a range of 10 to 30nmols/L, so still below normal. HoweverI feel great and would gladly settle for my present T level forever if it meant never going back on that demon concoction LUPRON ! Maybe you should call your Doctor and just tell him you'd like to have your T measured as well as your PSA in all your tests. As another poster mentioned it might still be at castrate level but you'd like to know for sure. Best Wishes

Dx 2020, Gl 4+3 =7, T3b N1 M0

[fish7days]

You can always get your own tests. anylabtestnow.com or walkinlab.com. No reason to wait for a doctor.

[London441]

What type of doctor is navigating you,? You should have had a baseline T and testing at regular intervals (usually every 90 days) throughout.

It is true that you may not yet be above castrate level and there is no certainty when or if you will rise above it. So it goes with Lupron. There is help should that be the case down the road. But you should not have to be testing yourself.

[runtrails in reply to London441]

Don't get it either. I've had PSA tests. But no t-level. Nice to know where you're starting from. Maybe my t was super low to begin with. Maybe it was super high. I want to know the movement in it. My RO, MO ,PCP, urologist none of which ordered t-test. When I asked my urologist he said he wouldn't even think of it until August because it doesn't provide clear data. It's not like it's harmful. I've already made an appointment for out of pocket at the same time as my next PSA in a couple weeks.

[London441 in reply to runtrails]

Good for you, sometimes you just have to look out for yourself. Baffling that you didn’t get baseline T etc but whatever.

I like what Dr Mark Moyad says about the general subject of testing:

‘If you don’t measure it, it doesn’t exist’

Great luck to you!

[EdBar]

I always test T level to be sure that I’m maintaining <20 level. Snuffy Myers was big on testing T, I’ve been doing it ever since.

Ed

[Don_1213]

My medical oncologist looked amazed when I told him my urologist (at the time) was doing PSA reads without testosterone *T* reads. He questioned the value of the PSA test without an accompanying T read.

I've since changed urologists - to one at Columbia/Presbyterian (where my med-onc is..) NYC. I think I figured out the reason for the difference in care between local and University MD's. The local MD has to look at every patient they can see as a source of income - the more they can squeeze in per day the more money they make. They charge Medicaid for a 15-29 minute visit that's over in 10 minutes (and at times try to fob me off on a NP..) A University MD - who is also on the teaching/research staff at the University is a salaried employee - they aren't driven by the profit motive. Mine usually have a medical student/resident in tow when they see me and are more than happy to explain anything I have a question about.

I now have a general rule - if the MD won't give you an email address to contact them at - they really don't care about you. The three MD's I now have (Med-Onc, Rad-Onc, Uro-Onc) all have given me their email addresses and are quite prompt in replying to emails.

[Biogamer]

My 2 cents: My T gets tested every 6 months, just prior to my Lupron injection, along with my PSA. This may be because I will always be on Lupron (Stage 4), so they want to keep track of both. FWIW, I've been on Lupron for 5 years and have had almost no issues with it. I know many men have a different experience, but "trouble-free" is a possibility. I'm at castrate T levels and unmeasureable PSA and have been for my entire treatment so far, and have had no side-effects that I couldn't attribute to being 61 and knowing I have cancer (my energy is a little low, and I sometimes get depressed).

[treedown]

MY MO isn't big on T tests but never says no when I ask for one. He did do the minimum though and do baseline before treatments started. After that I found this forum and have been in able to have him add it at anytime I want. My T bounced back quickly when I stopped ADT so be careful what you wish for my recurrence became evident about 6 months later.

[runtrails in reply to treedown]

Thank you. I am definitely not wishing for a quick recovery of t levels. No sense feeding the Beast starvation is still working. But how will I know if they are coming back or maybe even too fast if I don't know what the initial Baseline is. Even if the number is still declining I need some data point to start with. So just going out of pocket. At least for this one. I know a lot of men want their t levels to come back as soon as possible for intimacy reasons but since they took my nerves out during surgery as they had PC invasion that really isn't a worry for me. Low value and slow return is fine with me

[ElRanchoDePoisonIvy]

I’ve never had Lupron. Might be in my future though.

[Burk]

When I asked for a T test my URO looked at me and said, "we only order for tests that will impact treatment". It seems most of our Pca professions are a bit daft about how our T levels impact us psychologically. I finally asked my PCP for T and E2 tests. I test PSA, T, and E2 every 3 months. I wanted to be able to chart rise of T and its effect on PSA. If your MO refuses to order T test, try your PCP.