Bob reflects on his experience with long-term hormone therapy, discussing its impact on quality of life, including hot flashes, body changes, and other side effects. He encourages patients to learn about potential side effects before starting treatment, discuss strategies to manage them with their care team, and actively participate in treatment decisions.

Bob Hollander:

He initiated the therapy, androgen deprivation. So quarterly shot of triptorelin, oral bicalutamide. So he initiated it. And once I realized, well, this is what I'm going to be on until it fails, I stopped seeing him, and I asked my primary to refer me to an oncologist. I wouldn't have to see that guy again. And I didn't. I saw him one more time after that, and it was accidental and it was unplanned. This was like a year later.

So I had a great initial response to androgen deprivation, as most men do. All the bulky nodes, all the bulky disease just kind of melted away, which was great. But we all know that androgen deprivation eventually fails. The implication being that there's still some cancer cells there that are busy mutating and adapting.

A total of three years of androgen deprivation. And I was miserable. Yeah, it was just unpleasant. I gained weight. Libido was just... I mean a guy without testosterone, I'm not sure how much of a guy they still are. I gained weight in a funky distribution. I guess there are two things that I'm most angered by the urologist, the one that initially cared for me, about.

One was just the whole bad advice and the other, God, I wish he had told me that the gynecomastia, the breast enlargement that you're going to get from the androgen deprivation, that can be avoided if you get a little low level radiation to your breasts before the androgen deprivation starts. I wish he had told me. So that's one thing I would pass along to guys. If you're about to start on androgen deprivation, ask your radioncologist if prophylactic radiation to your breasts is right for you. So that was annoying.

I don't want to say I was obsessed with my body image, but I had worked hard to stay in shape my entire life. And now I'm on this therapy which totally messes things up. You gain weight in this funky distribution, you grow boobs, small ones. And I had actually always kind of been fond of small boobs in women. I hadn't planned on having my own. And then while other parts are growing, other things shrink. And even after I got off of ADT, not everything grew back.

So yeah, just the whole therapy, even though it's not like the life threatening chemotherapy that I was so familiar with seeing, and people are familiar with, the therapy has just an array of unpleasant side effects. Hot flashes. About three months into my androgen deprivation, I started with hot flashes. And I got them at 60 minute intervals. So I would have 24 just drenching hot flashes a day. I had to start carrying a notebook. Actually I still have it right here. I used to use a manila folder, but they would start falling apart, and my wife actually got me this leather binder with my initials on it.

So I'd be with my team during rounds, and I would start to flash, and I'd be just fanning myself furiously. The sweat would roll down my chest 24 times a day. It would wake me up every hour. So I'd be up at 60 minute intervals, five, six times a night with hot flashes. I had to change my sleep schedule. I used to go to bed at 11:00 and get up at 4:00, get up at 4:00 to bike to the hospital. But my sleep had become so disrupted I had to move my bedtime from 11:00 at night to 10:00 at night.

So libido disappears. The whole idea of sex becomes just totally repellent. Nothing was sexy. Hot flashes, weight gain, your junk shrinks, your sprout boobs. But hey, at least the cancer went away. So I had that. So after three years of that, I thought I got to come off this androgen deprivation. It was just, from a quality of life standpoint, I just wasn't happy.

So I had reviewed the literature on interruption of androgen deprivation therapy, and one or two of the articles I had looked at had come out recently. The idea of stopping androgen deprivation, following the PSA, and then starting it again once the PSA starts to rise, to do interrupted therapy. And what I was seeing was that interrupted therapy was inferior to continued therapy, but the advantage of continued therapy was not that much.