When I went on my first round of hormone therapy (ADT) I experienced severe cognitive side effects. I found it impossible to concentrate, read and remember anything. I lost the ability to navigate the New York City subways no less drive my car to a destination. Occasionally, when I was attempting to navigate the subway I found it necessary to get off the train, go upstairs (losing my fare) and call my wife Wendy so that I could describe what I saw so she could remind me where I was headed and how to get there from where I described.
Remembering what I had read from day to day was impossible. I finally went to a bookstore and bought a boy’s adolescent sailing novel about cannons and pirates, etc. Then, each night I went to bed and read the same first few chapters of the book. It was always new, exciting and I was able to follow the characters. Even though I had read the same chapters night after night it was always brand new and exciting!
When I reported this to my doctors they universally scoffed and told me that I was exaggerating. I was not it was this difficult for me.
Finally, the concept that chemo brain might exist for men on ADT has had some traction. Researchers from the University of South Florida have taken to heart this issue and decided to examine it from a scientific perspective. They have systematically reviewed the existing literature to determine the effect of ADT on performance across seven cognitive domains using a meta-analysis.
Through a search of PubMed Medline, PsycINFO, Cochrane Library, and Web of Knowledge/Science databases they found 157 unique abstracts reviewed by independent pairs of raters. Fourteen studies with a total of 417 men treated with ADT were included in the meta-analysis. Objective neuropsychological tests were categorized into seven cognitive domains: attention/working memory, executive functioning, language, verbal memory, visual memory, visuomotor ability, and visuospatial ability.
They found that men treated with ADT performed worse than controls or their own baseline only on visuomotor tasks (g?=?-0.67, p?=?.008; n?=?193). The magnitude of the deficits was larger in studies with a shorter time to follow-up (p?=?.04). No significant effect sizes were observed for the other six cognitive domains (p?=?.08-.98)
They concluded that prostate cancer survivors who received ADT performed significantly worse only on visuomotor tasks compared to non-cancer control groups. These findings are consistent with the known effects of testosterone on cognitive functioning in healthy men.
I guess I am truly an outlier. Are there any other outliers out there?
Support Care Cancer. 2014 May 25. Epub ahead of print. doi: 10.1007/s00520-014-2285-1; McGinty HL, Phillips KM, Jim HS, Cessna JM, Asvat Y, Cases MG, Small BJ, Jacobsen PB.
Joel T. Nowak, M.A., M.S.W.
It is undeniable that ADT medications, and primarily those that shut down testosterone production, has varying effects on each individual; I’ve witnessed these effects on local men. I expect I am among the more fortunate in that my many years of testosterone deprivation has had little, if any, effect on my variety of functions. I have never experienced side effects that I recognized other than only brief hot flashes early on in ADT that disappeared in a very short time. Thank You Lord, my cognitive and retentive functions were never hampered since I needed those functions to continue my research and study of PC as an active mentor to others.
Despite the side effects you experienced, you obviously “weathered the storm” since you have shared being a continuing vocal advocate, activist, and mentor to others over the years, as well as a close friend.
I began ADT 4.5 years ago, Joel. I had some of of this at the beginning, although I felt it was a change in how my entire body experienced life – a drastic reorientation. Now I have been on enzalutamide 5 months, and I believe a “brain fog” is one of my primary side effects. I have felt that many spatial & memory things have been dulled.
Ron, Just hang in and find ways to enjoy yourself. – Joel
I don’t know (and now can’t ask) about “chemo brain” when my Dad was on ADT alone, but he had a true case of it when he was on chemo (Taxotere/Jevtana). I could tell he wasn’t “with it”, sometimes he would just sit and stare out the window for a long time. He would talk about the “chemo brain” sometimes too, he struggled with it. He seemed to have more mental clarity once he went off..I didn’t observe it with Zytiga or XL-184.
Beth – Chemo brain has been acknowledged more and more in people on chemotherapy. Its existence is still very much an issue in men on ADT. Glad your dad has been more in touch since he completed the treatment.