What I Learned Recovering From Androgen Deprivation Therapy

The medical oncologist used the word “cured” in notes from an appointment I had with her. “Cured” in terms of prostate cancer is not totally reassuring for me, but I'll go with that in planning and living life from this point. (It's important to know that prostate cancer can recur, so some people choose not to use the word "cure").

Looking at my overall health

I wish now that I'd had enough knowledge and insight to do a complete baseline of my physical health before beginning hormone therapy and other treatment for prostate cancer. Considering the effects treatments can have on our sexual health, that for me would include evaluating:

• Testosterone
• Sex hormone binding globulin (SHBG)
• Bioavailable testosterone
• Luteinizing hormone (LH) and Follicle-stimulating hormone (FSH)
• Blood flow in the vessels that provide blood to produce an erection
• Any signs of potential erectile dysfunction (ED)

How hormone therapy affected my libido

My journey began when my urologist discovered nodules on my prostate during a digital rectal exam (DRE). Despite a PSA of only 3.1, a biopsy showed Stage 2b prostate cancer. I opted for 28 sessions of intensity modulated radiation therapy (IMRT; beam radiation therapy done on a Varian Truebeam). Plus 6 months of hormone therapy treatments (androgen deprivation therapy, or ADT) with Lupron depot.

When I was on ADT and had no testosterone to drive libido, I put myself on a program of remaining sexually active. I felt this was important to reduce the chance of penile atrophy and erectile dysfunction. After a while, having sex while castrate became almost a norm.

At the end of 6 months on Lupron, my testosterone went quickly to the 390 range. Within three months, it returned to the 450 to 500 range.

Was my libido returning or not?

After 3 years of being in remission, I still felt I had the fatigue and mood swings of low testosterone with Lupron.

It was also very confusing as to whether my libido was returning. The return of libido would mean I would be producing the nocturnal erections men normally experience that nourish erectile tissue. I would be able to kick back and let nature do its job, rather than having to be on an artificial schedule of sexual activity.

My urologist apparently began feeling that the questions I had were “above her pay grade” and began referring me to Oregon Health and Science University (OHSU)'s Endocrinology and Urology departments. Blood tests showed that while the testosterone level was reasonable, my body was producing too much of a chemical called sex hormone binding globulin (SHBG). This was locking up the testosterone and lowering bioavailable testosterone.

And we discovered that I have osteoporosis. Not good to be without the bioavailable testosterone needed to support strong bones and muscle mass.

Trying testosterone replacement therapy

I became worried that I may have ended a medically-induced andropause (male menopause), only to be facing a natural andropause due to age. I most definitely do not want to go through that again, so I decided to go on testosterone replacement therapy (TRT).

There is some debate as to whether prostate cancer survivors should be given testosterone, for fear it might cause recurrence. But the OHSU medical oncologist gave me the green light with the note that suggested I was “cured,” and in the belief that at age 78 the quality of life was more of a concern than the cancer. I was put on a schedule of daily doses of 1% testosterone transdermal gel.

After six weeks of TRT, libido seemed to be returning. It feels like the sexual experiences of “horniness,” arousal, and erection are separate bits and pieces. I can't remember what I felt before treatments, so I do wish I'd done a baseline for reference to understand what is going on. Fatigue and mood swings seem to be less.

Getting my PSA levels checked

The usual quarterly PSA draws give us all anxiety. But now with the possibility of TRT causing a rise in PSA, the first draw after going on TRT was even more anxiety-making.

It appears I needn't have worried, as the results of the blood tests were very optimistic. My PSA remained normal, despite the fact that the testosterone level and bioavailable testosterone levels have doubled. I hope this will be the trend in the future. The endocrinologist at OHSU told me that there is no way to reduce sex hormone binding globulin (SHBG), but the lab results show a small decrease in SHBG. I hope this, too, will be the trend in the future.

This is a very interesting journey. I hope my experiences will help other men fully recover after undergoing ADT.