My Experience With Testosterone Replacement Therapy After Prostate Cancer

After radiation and hormone therapy for prostate cancer, I dealt with a lot of side effects. I had serious fatigue and brain fog. I was not sure if my libido would return. I also felt I could see my muscles melting away and was diagnosed with osteoporosis.

Three years later I still felt these symptoms were hanging on, and I wondered whether testosterone replacement therapy (TRT) might help. Research such as a 2023 study has suggested testosterone replacement therapy does not increase the risk of developing prostate cancer, as once feared.¹ So I wanted to find out more.

Getting approval for testosterone replacement therapy

I went to an endocrinologist to learn more, but he refused to discuss TRT for prostate cancer survivors.

Concerned about this, I went to a medical oncologist at the OHSU Knight Cancer Institute who gave the green light. I decided to trust the oncologist and focus on quality of life rather than worry about the small chance of recurring cancer. I asked the Physician Assistant who was my primary care at the time to provide TRT.

A lab check of total and free testosterone showed I had 500 nanograms per deciliter (ng/dL) total testosterone, which is in the “normal” range of 300 to 1,000 ng/dL.² We found I have a very high level of sex hormone binding globulin (SHBG), however, which tends to lock up testosterone. So I had very low levels of free testosterone for use by my body.

Finding the right dose and feeling the benefits

The PA prescribed a 25 mg daily dose of testosterone gel. My total testosterone level went to around 1000 ng/dL. And free testosterone - which is normally about 1% to 2% of the total testosterone, and the portion of testosterone not locked up by SHBG - rose to mid-normal levels. My PSA remained stable.

All good.

After a few weeks I felt more energy and fewer “senior moments.” I could now do “death-defying” things like step over my sleeping Aussie shepherd when he blocked the door or hop over the water in the gutter to land on the driveway. When I walked our dog I could take huge strides and even walk backward to watch him when he lagged behind.

Libido had been the first thing to return, though it was not consistent and I did not feel erections were spontaneous. I set aside my overwhelming sense of modesty and made an appointment with a pelvic floor therapist. They showed me helpful tips, including how to relax the muscles that control flow of blood to and from the erection.

About this time my PA moved on and the TRT prescription and monitoring transferred to another health provider.

Facing a sudden setback and medical dismissal

After almost two years, I suddenly had a sense that I was falling back to square one with fatigue and brain fog. I asked for a lab of my total and free testosterone and PSA. As I suspected, total testosterone had fallen to 640 ng/dL (from my high of 1000 ng/dL), and free testosterone had fallen to below normal.

I went to my current medical provider to ask why a dose that gave the same results for two years would suddenly give 40% lower results. They and two other medical providers had no curiosity about the sudden change in results, saying that a level of 640 ng/dL put me in “normal” range and that was sufficient.

Two of the providers suggest that if I can produce an erection I have sufficient testosterone. This was frustrating to me. The truth is that libido is not "on" or "off." It's a range of intensities and neither testosterone nor libido is required to be able to produce an erection.

It became clear these providers do not have adequate training in administering or monitoring TRT.

Hoping doctors have better understanding of TRT

I'm aware I'll need to remain on TRT and am fine with that. As of now, I'm looking for medical providers with more in-depth knowledge and who are more patient-focused.

An FDA expert panel on testosterone replacement therapy for men gives some hope for better understanding and change in the medical community. The consensus was that men are being denied needed care without real justification under current guidelines. And the importance of free rather than total testosterone was highlighted.