Testosterone- Should I be tested and monitored?

[JazzMan42]

Diagnosed 11/2018, Gleason 9, metastatic, uptake of MDP in vertebra, ribs, and pelvis. Last biopsy,NUC Bone scan and CT all November 2018. Treated with Lupron, Zytiga (with prednisone) since then, and PSA numbers have been declining from 7.57 in 11/18 to current at 0.4. I have asked my MO about testing my testosterone but he says not necessary as my numbers look good. Should I insist or is he right not to do it until PSA starts rising? Looking for the collective wisdom of this wonderful community.

[Hidden]

I agree with your doctor that it is unnecessary as long as your PSA is low and not rising. Lupron is very reliable so as long as you are getting your shots, it's very unlikely your testosterone will rise. If checking it helps your peace of mind, then you should do it. I don't think it costs much if you had to pay for it out-of-pocket.

It is necessary to check when your PSA starts rising again. In order to determine whether someone is castrate resistant, you need to first make sure they are castrate.

[LearnAll]

In a way, your MO is right as your PSA going down to 0.4 is indirect evidence that you are in castrate level of testosterone. However, I woluld prefer a total testosterone test to know my baseline level for future reference. If Total T comes below 20, you are in good shape.

[Philly13]

I receive firmagon injections monthly since May. I buy packages of blood tests from Direct Labs and have been feeling pretty energetic for the last month or two. In my Advanced Prostate Cancer psyche I started to wonder if feeling good was bad. They had a package which included Testosterone so I figured what the heck.

Below is my result which arrived about an hour ago. I don't know for sure what it means but I am taking it to mean that it is too low to measure, and crossing it off my list of concerns.

TESTOSTERONE, FREE see note NORMAL 02

Result cannot be calculated.

Philly

[tom67inMA in reply to Philly13]

Yep, my recollection is you need a measurable T to calculate free T.

[GP24]

Most doctors are convinced it is not necessary but after reading the study by Klotz I would want to know it:

ncbi.nlm.nih.gov/pmc/articl...

As the Klotz study shows, testosterone has to get below 0.7 nmol/L for best results. If you add Zytiga it should be below 0.3 nmol/L.

ADT can lower the testosterone only and one expects that this again will lower the PSA value. So measuring the testosterone lets you monitor the treatment closely.

[Tall_Allen]

Why not get it just for your peace of mind?

[tallguy2]

I would ask for Total Testosterone level every time you get a PSA reading.

[michael00]

I asked my MO same thing, he also said not necessary as they expect it to be low with low psa. Also asked Urologist and he saidthey will test it if PSA begins rising

[tom67inMA]

I've only had my T tested once, at my request before starting Abiraterone, and it came back <7. Even with such a low T, my PSA only dropped to undetectable after starting Abiraterone.

There's two different units used to measure T, so to follow up on GP24's reply if you're test is in those other units, <50 is castrate but <20 produces even better results, assuming I recommend those numbers correctly.

[LearnAll in reply to tom67inMA]

Total T less than 10 and free T less than 0.7 pg/.ml gives you about 60 months of progression free survival esp if your PSA nadir is less tha 0.2 and time to Nadir is more than 6 months.

[tom67inMA in reply to LearnAll]

Does it matter that nadir was hit after lupron, docetaxel, and abiraterone? Cause I've hit all three of those criteria

[LearnAll in reply to tom67inMA]

I am not sure but guess it does not matter how you killed those cancer cells .The fact remains that you did kill them all or most of them.

And these four parameters should be accomplished in first year of diagnosis. In my case, I have also accoplished all four criteria with Lupron+Zyrexa+predni.

[Hawk56]

Throw the BS penalty flag at your urologist, he’s being lazy, uniformed and as we say when I play pick up basketball “old school.”

My urologist also did not want to monitor T while I was on Lupron for the same reason yours cites.

When I explained the Klotz study that GP24 gave you the link to and why it was important to know whether it was below 50, 20, 7....he relented.and ordered the tests in conjunction with the PSA tests. Mine was always below 7 so we never needed to add Zytiga or another drug.

I finished my 18 months of ADT in May 18, T in February 19 was 483 and PSA on 3 Jan 30 was .07.

It’s called joint decision making between a patient and their medical team and unless the patient requests something absolutely unnecessary, harmful...the medical team should support the patient’s request. As my urologist said, “Kevin, I learned something today...”

[Hidden]

I am not a physician, however, my T and PSA have been tested together since May 2004. In all over 120 testings. As my research MO said, they are the two most important values to track metastatic prostate cancer. Some disagree, however, now that my guy has passed on due to a different cancer, I am still being tested together.

Initially the two values were tracked, in layman’s terms, as an early warning system in the spread of PCa. Since 2011, it is more of a cause and effect effort.

Note: my last a Lupron injection was February 2010 and since January 2011, the only medication related to prostate cancer is low dose, 4 mg, of Androgel twice a week to supplement T. The result is a six years of T at <5.0 to an average of 500. My T is never coming back on its own and supplemental medication helps me to maintain all the positives of testosterone.

Good luck. In my non-medical opinion, during an active phase of metastatic prostate cancer, having low PSA under medication and a high T, says that something is going on and it is usually not positive.

Gourd Dancer

[dmt1121]

I insist on the testosterone number for each PSA test and my MO has not objected. It is more for the patient than the doctor but if something is off, the doctor will also be alerted. I prefer as much information as possible. PCs is enough of a "black box" as it is, so the more we expose about our condition through different diagnostics, the better (in my opinion).

[RonnyBaby]

I have had a 'T' test on a regular basis, along with the other key markers. Typically, I get a complete blood panel done every 3 months, as well. I'm monitoring my immune system because I have auto-immune diseases (arthritis and psoriasis) AND my immunity system crashed after my 16 months of ADT treatment. My immune system has fully recovered and my blood work is excellent. Virtually everything is within the normal ranges.

Now, could I have told you my condition IF I wasn't on top of things and monitoring my reaction(s) ?

Knowledge is power. You can't have any answers with out the data.

[Parscore]

Sorry if I missed a previous post that answered this..."my T ran about 12-15. I decided to get it lower, with some drug adjustment" How did you do that? My current T is 10 and I am only on Firmagon with a rising PSA. Do not want to go on Zytiga or Xtandi. Thanks

[Parscore]

Interesting. Thank you

[Hidden]

It’s nice to know your t level. They test my T level along with 50 Other things tri monthly for the trial adt drug that I’m on. I figure it is important or they wouldn’t do it . I don’t see why they wouldn’t .?

[monte1111]

Almost 3 yrs. and never had testosterone or bone density tests. (Extensive bone mets.) I asked the same question about a year ago and it seems most felt it was a non-issue. Just reporting the feedback!!!! 0.1 psa now - 6 cycles chemo, 29 months Xtandi. Have just been changed to Xgeva once every 3 months. (Dr. says so teeth don't fall out!) Blood work also changed to every 3 months. I think Dr. forgot to mention those teeth would be attached to jaw that also fell out? I like my 6 teeth. And my jaw. Pleasant dreams!