Intermittent hormone therapy: A patient’s story

In 1995, Patrick Kirby,* an elite runner, went to his doctor for a routine check-up. During the digital rectal exam, the physician felt a suspicious nodule on Mr. Kirby’s prostate gland. A subsequent blood test showed an elevated PSA of about 10 ng/ml, well above the normal range of 0 to 4 ng/ml. Concerned, the physician sent him for a prostate biopsy, which came back negative. When the PSA continued to rise, Mr. Kirby endured a second biopsy in 1996 and was disheartened by the results: he had prostate cancer. The cancer was scored 3 + 3 on the Gleason scale, indicating a moderately aggressive cancer. In an effort to determine the extent of the tumor, doctors performed an endorectal MRI, but the test didn’t definitively determine whether the cancer had spread beyond the prostate capsule.

While Mr. Kirby debated whether to have surgery or radiation, a specialist prescribed hormone therapy to keep the cancer in check. (See “Neoadjuvant hormone therapy,” below.) Ultimately, Mr. Kirby opted for a radical prostatectomy in 1997. Unfortunately, his PSA then began to rise — from undetectable to 0.7 ng/ml in less than a year — prompting treatment with radiation therapy and a second round of hormone therapy. Once again, his PSA dropped to undetectable levels.

The roller coaster ride, familiar to so many prostate cancer patients, continued in 2001, when his PSA bounced up to 3.5 ng/ml. This time, his oncologist suggested intermittent hormone therapy (IHT), which involves repeated cycles of hormone therapy to rein in the cancer followed by off-treatment periods. A few months of therapy quickly drove Mr. Kirby’s PSA down to undetectable levels until February 2003, when it climbed to 3.2 ng/ml.

At that point, many patients, in consultation with an oncologist, would have probably started a second IHT cycle. But Mr. Kirby and his doctor decided to wait a little longer before restarting the drugs. Nearly four and a half years have passed, and they are still waiting.* Although the jury is still out on whether IHT might help patients live longer than continuous hormone therapy, which doesn’t allow so-called drug holidays, Mr. Kirby’s story might help patients who are debating various treatment options.

You first went on hormone therapy about 10 years ago, prior to your surgery. What was it like? What were your expectations?

I didn’t really have any expectations. I was taking bicalutamide (Casodex) and leuprolide (Lupron). I had some pretty severe hot flashes over quite a period of time.* What I learned for the next cycle is that I only needed bicalutamide for 30 days, so the second and third times I went on hormone therapy I dropped it after a month. After that, I didn’t really have side effects anymore.

What else can you say about the first hormone therapy treatment versus the subsequent ones? Was there any difference in how you reacted to it?

Well, hormone therapy reduces testosterone levels, but no one noticed any difference in me. I was still my same old objectionable self.

What about your ability to work? Did it affect your intellectual capacity?

No. There was no impact at all.

What about exercise tolerance and weight gain?

I was probably a little slower, but it really didn’t make much of a difference when I was racing. I did gain a little weight. Maybe five to eight pounds.

And sexual activity?

Given my reduced testosterone levels, sexual activity quickly lost its luster.

So you went on hormone therapy and had surgery, but your PSA started to creep up not long after that. What was your reaction?

Actually, I started thinking that I should have done things differently. I elected to have surgery over radiation because my doctor said that I could always do radiation later if the surgery didn’t work, but not the other way around. But because the MRI showed that the cancer might have penetrated the prostate capsule, I think that maybe I should have opted for radiation. Maybe the radiation would have caught everything.

But you made the decision based on the information you had at the time.

Yes, but had I had radiation, it might have gotten more of the cancer than the surgery got because it can treat a larger area. Obviously, the surgery didn’t get it all. Something was outside the prostate even though they said everything looked clean.

So, you went on hormone therapy a second time prior to radiation. What were your thoughts and reactions the second time around?

I admit that I was a little disappointed. But then I told myself, “That’s life and it’s going forward.” I had to go forward, too. I knew that the hormone therapy would work, so I went ahead with it. I had it all the way through radiation. I just had to go in every month for a shot.

Did you have any side effects from the radiation?

Well, I remember that I was okay at first. Near the end, they talked about how I might develop a very sore rectum, and that happened. I remember I was concerned about running because I had a race coming up. I asked my doctor if I would die if I ran and he said no, so I ran. It went well. I was back to 100% a month and a half later.

A lot of people suggested that you start another cycle of treatment when your PSA hit 3.2 ng/ml in 2003, but you chose to wait. Why?

At first, I thought my PSA was going to rise very quickly. But the doctors said it might be seven or eight years before anything would show up on a bone scan, so I knew I wasn’t in imminent danger. Plus, I figured that we could always try hormones again at any time. I was waiting for a magic bullet to come along, a drug or something else without the side effects. That hasn’t happened yet, so it’s really just a question of watchful waiting until my PSA gets to the point where we have to do something.

Your PSA is creeping up, though. It was 5.8 in July 2007, right?

Yes, but I know that I can only have so many cycles of hormone treatment before the cancer builds up resistance to the drugs. Four cycles? Five? Six? Who knows? I wanted to ration them until I really needed them. At one point, before any treatment 10 years ago, my PSA was up to about 25. So I guess I’ve just felt that there’s no urgency to jump into another round of hormone therapy unless the PSA doubling rate increases dramatically or other tests show disease progression. For an explanation of PSA doubling rate, see “PSA velocity,” below.

What PSA number would prompt you to restart hormone therapy?

Probably in the range of 7 to 8.

What staging studies have you had?

I’ve been doing MRIs, bone scans, and CT scans on a regular basis. So far, they’ve all been negative.

What’s your emotional state like when you go through these evaluations?

There’s absolutely no change, nothing. To me, it’s just another day. I get up in the morning, go to the appointment… it’s just another thing on the schedule for that day.

How did you feel physically after you went on hormone therapy for the third time? Did you notice any changes while you were on it?

No, absolutely not. I am declining, but I don’t think the hormones have had much to do with that. It’s just that I’m getting older. Maybe I’m getting slower more rapidly than I otherwise would, but I haven’t noticed anything dramatic.

Did you notice any changes in how you felt when you started the off-treatment phase of IHT? After all, the whole idea behind IHT is to improve the patient’s quality of life and sense of well-being during the off-period.

For me, hormone therapy is a way to help prevent the progression of cancer. I’m not really doing it to improve my quality of life or for stress relief, though it does help to know that I’m doing something about my cancer. I think about it as a long-term problem. I’m not looking for short-term benefits. My quality of life is the same either way.

Really? Even physically?

I didn’t have any physical side effects except for the hot flashes and cold sweats, which I eliminated by going off of the bicalutamide after the first 30 days.

What has your family’s response been to your diagnosis and treatment?

Well, no one comes up to me and wrings their hands, but when any family member gets ill, the others are all concerned. They want to stay informed. Luckily, my condition hasn’t turned out to be an enormous problem, so they aren’t overly worried.

Do you have any final comments on hormone therapy or your experience with prostate cancer that you’d like to share?

Well, having prostate cancer is not the end of the world in any way, shape, or manner. Obviously, you’ve got to stick with your treatment plan, make sure that you’re informed about the latest research, and work with your oncologist. For me, hormone therapy is almost like taking cold medicine or taking a pill. Other than having to go in for the shots, I didn’t have any problems with it whatsoever. And when it’s time, I’ll go on it again.

Originally published Jan. 1, 2008; last reviewed March 22, 2011.