I intend on getting my own blood test that will form the baseline for how the future HT is working. When it comes to getting testosterone tests, I note there are a few to select from. Which one should I get from the following list?
1: Testosterone Free/Total + SHBG
2: Testosterone Total
3: Testosterone Total by LCMS
Each of the above are priced differently.
Also apart from PSA Free/Total, are there any other vital tests I should have?
I notice my MO has been ordering Bio-available Testosterone also. But this is after the fact. Don't know why, I should probably ask. Might come in useful for you down the road as a comparison
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I'm not sure that test is available when getting your own blood test. But will check. Thanks
I take total Testosterone and ultra-sensitive PSA every month and have done so for the last 6 years. My cancer is aggressive so I want to know if things are changing as early and as accurately as possible. Labs differ on precisely they measure PSA. Lab Corp where I live can measure down to 0.006. Kaiser in my area measures down to only 0.12 or something like that. Want to know baselines before ADT for both. The lower you go, hopefully T= <3 and PSA= <0.006, the better you are reacting.
You should also get a Dexa Scan to establish your baseline bone density to that you can check how ADT is affecting your bones. This is another pre-treatment baseline that will prove helpful. Finally, if you have not gotten a PSMA PET scan to see whether any cancer is detectable outside the prostate, especially if you are considering surgery. It was approved for pre-treatment diagnostics by the FDA a couple of years ago and is widely available. I'm not a doctor, but this is the best advice I have heard in the many support groups I am part of and these benchmarks have helped a lot in subsequent treatment decisions.
Oh - one more question - Are you doing all these tests yourself or is your Dr organizing them for you. If you are paying for them and then presenting the results to your Dr, - what is his attitude about receiving them? My Dr seems to want to do only necessary testing and I get this impression that he thinks over-testing is not warranted.
Most of us in cancer support groups are strong advocates of being proactive. I have tried and changed doctors many times. We each need to identify a care team - beyond a Urologist (surgeon/plumber), we need oncologists - medical, radiology, hematology, and then heart and orthopedics, if our cancer progresses. Who manages that team? Under the US system, we do. Actually, that has some distinct advantages.
Medicare will pay for everything I have mentioned. If I have a doctor who resists any of these actions, they are the wrong doctor for me. Great doctors are out there and one of the best ways to find them is to be part of a support group that gives you a broad range of experience with different types of treatment and providers. I did have to pay for my first PSMA PET scan 5 years ago, but boy, was it worth it!! What is important to me is that I not have to live with the guilt that I did not do what I should have done to make the best decisions I could, given always imperfect information. Cancer is bad. Cancer plus regret is unnecessary. Wishing you the best.
Thanks so much for your information. I have heard that a bone density scan is good to get prior to ADT starting. It looks to be a very simple non invasive test using a specialised Xray machine. I will check on such a test. I hope you continue to have success with your ongoing treatment plan and that your QoL is satisfactory. All the very best for 2024.
Thanks, Pal!! Know that you are not alone. We are all in what we call, "The Reluctant Brotherhood". I'm here for you and so are many others. And you can be there for people as you continue to learn more. That's how we create community! Happy-Merry!!
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