Stalked by a Stealthy Cancer, Part 3: ADT Side Effects

By Frederick Thurber

2 min read

Frederick talks about dealing with the side effects of androgen deprivation therapy in Part 3 of his series. Read Part 1 and Part 2.

In for a shock

Last week I was in for a shock when perusing pictures of myself from 2017. Who was that healthy, vigorous, middle-aged man? When I look in the mirror today, I see an old man. What changed? Possibly androgen deprivation therapy (ADT).

I started ADT in 2018, and the effects on me have been profound. But at least now when I look in the mirror, I see a living old man; without ADT that may not have been possible.

A medication treadmill

I started with a single dose of Bicalutamide followed by with three injections of Lupron, spaced 6 months apart. Combined with IMRT radiation therapy, my PSA dropped from 2.9 to .1 to .01 to undetectable. Thankfully, my PSA has remained undetectable, and I have ADT to thank for that. But there has been a cost.

The published side effects of Lupron look like a checklist of all the symptoms I have experienced. And in some cases, the attempted treatments of these side effects have caused other problems; many times, I have thought that I am on a medication treadmill.

Experiencing ADT side effects

My initial experiences with ADT went well, but as I was to find out, ADT crept up on me, gradually disrupting up one bodily function after another.

The first sign of trouble was the swelling of my ankles (edema). I work out a lot and have athletic legs, so this was a surprising issue, but worse was to come.

Next came the hot and cold flashes. Sometimes my temperature dipped to 95.3, and I had trouble warming up (until I got a hot flash and got overheated). I also was plagued by sleeplessness at night because of hot flashes, leg cramps, and frequent need to urinate (nocturia); I have not had a full night’s sleep since the ADT kicked in. Flomax was proscribed to help the nocturia but ended up making me dizzy, so I am off that.

Share your experience with ADT

Adding to the woes

My high-stress job, in combination with commuting (I had two car accidents), added to my woes. Acid reflux, debilitating fatigue, and gastrointestinal issues became a problem. The PPI proscribed to treat the acid reflux (Pantoprazole), possibly in combination with Lupron, caused some bone density concerns.

My sexual potency and even my interest in intimacy gradually decreased as my testosterone plummeted because of ADT.

While all this was going on, my body underwent some disturbing changes. I put on weight, my face sagged, and my breasts enlarged. Another worry was that my blood sugar crept up into the 103 range; I am not yet diabetic, but this was an alarming development.

Other serious issues

More serious issues followed. I was surprised to find that my cholesterol levels spiked, since I have no family issues with cholesterol, and I am very careful about saturated fats. My doctor put me on Atorvastatin, but now I have had to deal with its side effects, such as sore muscles and joints. Most worrisome of all is my heart health; recently I developed cardiac atrial fibrillation (AFib).

It is hard to say for certain if ADT caused all these side effects. However, it would seem that ADT has beaten back my prostate cancer and extended my life. So I will take it, even if there are tradeoffs.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Tony Collier Moderator & Contributor
<inline-mention username="Frederick Thurber" user-id="4142698"/> I empathise with you. I've been on double dose HT since my diagnosis in May 2017. Like you, I feel a shadow of my former self but I'm glad that I'm still here to tell the tale.
Guy Meredith Moderator & Contributor
<inline-mention username="Frederick Thurber" user-id="4142698"/> You have the full sympathy of anyone who has experienced ADT. Under the best of conditions ADT is no fun and definitely not something most of us would want to experience were it not a way out of the much worse experience of advanced prostate cancer. I explain it as being similar to menopause in the short term and similar to being post menopausal in the longer term. Could you expand a bit on your treatment? It sounds like you are on long term ADT? Much of what you describe sounds like long term effects. My experience with short term ADT was limited to hot flashes, emotions, loss of libido, some belly fat and a lesser amount of breast fat, sensitive nipples and fatigue. If you are still on ADT, will you at some point be able to stop the treatment? Typical for intermediate risk level of cancer is 28 sessions of IMRT and 6 months ADT. Once the IMRT treatments are done, the ADT is discontinued. I am not familiar with the treatment for men with your level of cancer.
Frederick Thurber Moderator & Contributor
I got IMRT and three Eligard injections, 6 months apart (I was stage IIC so they did heavy intervention). Each injection was supposed to last 6 months, but the last one lasted about a year (I could feel the lump that long). Most side effects have never seemed to dissipate. It has been a miserable couple of years, but it happened so gradually that I did not notice must at first; however, now I am a wreak with no sleep, hot flashes, and intense cardiac AFib (out of breath and dizzy). The one thing that has recovered a bit my libido and sexual functionality; this is probably because my testosterone has crept up to about 65.
1. Frederick Thurber Moderator & Contributor
 <inline-mention username="Frederick Thurber" user-id="4142698"/> Correction: I was at Stage IIIC, not IIC.
Guy Meredith Moderator & Contributor
<inline-mention username="Frederick Thurber" user-id="4142698"/> That is pretty serious regimen. Are you now off the Eligard? I am assuming you must be if your testosterone is increasing. Keep at the sexual activity. Having frequent erections is needed to keep erectile tissue healthy. Most doctors are not aware, but men who are castrate and have no libido are able to have sex. It is just not the spontaneous, testosterone driven type of sex. I made sure I had an erection almost every day of the 6 months I was castrate while on lupron. Libido is not necessary, just erotic fantasy and physical stimulation. Best way to go is being intimate with a loved one. Next best is active erotic imagination and a vibrator.
don-e Member
I can only sympathize with your problems. I ended up with 5 stents after ADT. I had much the same treatment for my G9/10. 45 IG/IMRT sessions, Lupron for 18 months. Finally - after a year off of ADT my testosterone has recovered to around 335 and some of the really depressing side-effects of ADT are lessening (lack of energy being a primary one, brain-fog another.) Unfortunately, some side effects became permanent - a bad back has become a really bad back - really limiting what physical activities (including walking) I can do. I do have an entire coterie of physicians now - each attending to one of the various side-effects I still have. At least that keeps me busy. Hang in there... as bad as it was - it's better than the alternative.
steve1931 Member
I started with a several 4-3 nodules, stage3 c I think. I did 28 imrt sessions, and before starting that I was given my first Eligard injection. I am now done with radiation, just got my second Eligard shot. I have put on 15 pounds since June, I seem to be eating everything in sight. They want me on Eligard for a total of 24 months, I am requesting no more than 18. I started with a Testosterone level of 685, which Dr says is pretty high. She says due to the very high level the side effects of Eligard will be pretty severe. Oh joy, at least the pc has not spread farther than the seminal vesicles. Good luck to all of you. Take care.