Getting Testy

On whether there is, in fact, too much testosterone in the room.

You've heard the expression "too much testosterone in the room."

Do you ever wonder how they know? Men (and women, for that matter) don't usually get their hormone levels checked, unless they're worried about fertility. In the case of prostate cancer, that can be a grave mistake.

One of the biggest mysteries of our prostate cancer journey has been the fact that my husband Steve's PSA level had barely pushed over the normal boundary (4.5 for a 62 year old), and, yet we discovered he had advanced prostate cancer that had spread outside the prostate to three lymph nodes. Most people with that level of advanced cancer might have a PSA range from 20 to over 100 ng/mL, with some patients seeing levels even higher than that. How could Steve be a PIRAD 5, Gleason 8 and not even be in double-digit territory?

Several of the doctors we met along the way commented on this disparity when reviewing Steve’s files for the first time, but none of them offered any explanation. During one telehealth visit with a radiation oncologist Steve finally asked about it, and the doctor just responded vaguely that it was “strange” and that he was “not sure.” That it certainly was not normal for the size of the tumor (almost the entire left side of the prostate) and the lymph node invasion.

Since we were ready to go into full blown Kill Cancer Mode, we let the question slide, chalking it up to genetics and our bad luck. Now, looking back, we realize that we were missing a huge and important piece of the puzzle. With every “normal” PSA test going back several years Steve was most likely getting a false negative, which allowed the cancer to grow, while the results had us believing we were ok.

Turns out the very thing prostate cancer patients are told to fear could be the very thing that can help men avoid prostate cancer in the first place. That’s right, we’re talking about testosterone.

In a previous article we talked about the best time to start monitoring your PSA, and where that PSA median should be based on your age. What we failed to mention is that the very first PSA test should be done with a testosterone test as well. We would actually suggest that these MUST be done together.

Even if you have been tracking your PSA for years now, we encourage you to get your testosterone test done as soon as you can–to ensure the results you’re seeing are as accurate as possible.

Why is this important and something Steve wishes he was told about years ago? Testosterone plays a key role in stimulating PSA production. Apparently, if you have low testosterone and do a PSA test the PSA number will be low as well—despite the fact you may have cancer growing, hence the false negative.

According to Dr. Helen Bernie, a board certified, fellowship-trained urologist and the Director of Sexual and Reproductive Medicine at Indiana University, “PSA is an androgen dependent molecule. That means that you need testosterone in the body in order to make PSA. So in men that have low testosterone you may have falsely low levels of PSA. We have many studies…that have looked and found that…low testosterone levels are actually correlated with higher rates of prostate cancer, more advanced prostate cancer tumor grade stage and volume compared to eugonadal men.”

You can find this segment at 15:55 in the following video dated June 30, 2024:

At 16:45 in the same video Dr. Bernie suggests getting PSA and testosterone done together to reduce false negatives.

Just after Steve stopped ADT, his testosterone level was measly, which left him feeling fatigued, depressed, and suffering from muscle loss and of course zero libido - things we would not wish on our worst enemy. Now his level is just below the normal zone (299) and he's feeling a bit better. What was it before we started the cancer treatment? We wish we knew!

I should tell you that I don't often see Steve angry. He's usually the kind of guy who keeps any kind of pain or frustration to himself—typical stoic. When it comes to talking about testosterone, though, he can get pretty heated lately. Why is it that none of his health care providers recommended a testosterone test when he first started tracking his PSA in 2016 despite knowing his father had passed away from prostate cancer? "Why am I the one who is figuring this out?” he asked me the other day. “This should be standard of care, especially when there is strong evidence linking advanced prostate cancer cases to low testosterone!” (Yes, we have these types of conversations a lot lately)!

If Steve had been tracking testosterone alongside his PSA, we could have raised the flag much earlier and possibly treated a much smaller tumor with fewer invasive measures needed. So I can see why, in this case, his anger slips through the zen: androgen deprivation therapy sucks. There are no two ways about it. I've seen it affect his energy in a big way. I've seen it affect his mood. I've seen it affect his body. He doesn't have the muscles that he had. He gets injured easily. He doesn't look quite the same. Come to think of it, I’m feeling ticked off myself!

Men are supposed to have testosterone, just like women are supposed to have estrogen. Taking it away is a pretty big thing. Definitely not something you should do lightly.

Steve asked his doctors about adding TRT (testosterone replacement therapy) and each time, the response has been a grave look and an admonition, "I wouldn't want to add fuel to the fire." But based on recent studies that may not be the case.

Testosterone does not cause cancer, but it can definitely help us find it. We have PSMA PET scans available today (more on this later). This technology is currently the best way to determine if prostate cancer might be in our bodies and specifically where it is.

If we purposefully eliminate our testosterone and then celebrate our very low PSA numbers we might be causing the same false negative ourselves. According to Kristin Geiger, A Nurse Practitioner specializing in prostate cancer, using TRT at the right time can provide a more definitive answer to whether or not the cancer is gone, and if it’s not, provide reason to get a follow up PSMA PET scan to locate and spot radiate the cancer before it can do more damage.

You can view her discussion on this topic in this PCRI video dated August 4, 2024 at 14:55:

Dr Mark Scholz talks about the advantages of administrating testosterone in this video dated May 15, 2023 at 3:44:

So here’s what we have learned the hard way: Testosterone may be your best friend in the world of prostate cancer.

It definitely is when screening because its presence ensures the PSA number you are getting is more accurate in predicting cancer.

Maintaining normal testosterone levels is also known to help prevent prostate cancer and there are current schools of thought that adding back testosterone post treatment is a good idea as well. After all, testosterone gives you the energy to take care of yourself!

And if you love a person who has male body parts, please share this information with them. It’s a very sensitive topic, I’m aware, and not one most men are eager to discuss. Remind them that testosterone is not a measure of what kind of man/person they are. It’s not about being more manly. It is a key factor in being healthy and strong and active, and isn’t that what you want so you can enjoy many more years together?

Have a great rest of your week. And if you haven’t already: run, don’t walk, to get those testosterone labs done!

Love,

Brenna & Steve

PS: As a reminder, we are not medical professionals (well, my husband sometimes thinks he is 😀 ) We’re just sharing our journey and some of the research we picked up along the way in case it helps you and your loved ones.

Brenna