Mr. Spencer Le Gate spoke to Prostatepedia about his prostate cancer journey and his role in his local support group.
How did you find out that you had prostate cancer?
Mr. Spencer Le Gate: My family doctor put me on a small dose of a statin drug for cholesterol back in 2000. He had the good sense to give me a blood test every three or four months to check all my vital organs for any problems. At the end of 2007, he noticed that my PSA had started to rise. He asked if I knew anything about prostate cancer. Just a month prior, a childhood best friend had died from prostate cancer, so that was my introduction.
We watched my PSA for about a year, and then, in early 2009, I had a biopsy. We determined that mine was not the most aggressive form, so given all of the options, brachytherapy seemed like a good choice. I had the procedure in May of 2009. After that, there was a small spike in my PSA, which we all hoped would diminish as often happens after treatment. Almost two years later, my PSA had gone from around 1 up to almost 11, and that meant I had a recurrence of prostate cancer. Around early 2013, I had a biopsy that confirmed that I was recurrent nonmetastatic. I went on Lupron (leuprolide), which brought my PSA count down very nicely, so I asked if I could do it intermittently.
You asked for that rather than the doctor suggesting it to you?
Mr. Le Gate: Yes. I wanted the vacation because, of course, I experienced side effects.
What kinds of side effects did you experience on Lupron (leuprolide)? How did you manage them?
Mr. Le Gate: The side effects for me were, of course, the most common: hot flashes. At one point, I did have a Depo-Provera (medroxyprogesterone) shot, which diminished the hot flashes pretty well. The others were loss of libido and muscle weakness. I have lost muscle mass throughout my body, but particularly, in my legs. My muscles atrophied.
Were any of these side effects severe?
Mr. Le Gate: I would say, for the first round of my treatment, not so much. But since I went back on Lupron (leuprolide) in 2013, they are more pronounced. When I took the vacation, my PSA went up alarmingly. In other words, it was worse than that scary doubling threshold in three months.
Did they put you back on the Lupron (leuprolide) as soon as that started to happen?
Mr. Le Gate: I’ve been on the Lupron (leuprolide) for almost two years. Now, when I get up in the morning, my legs are painful and I’m a little rickety. Despite the fact that I’ll be 75 in a few months, my legs have been good to me, and I’ve led a very active lifestyle. The pain I feel now in the legs is not just the inevitably of age, but the Lupron (leuprolide).
Does exercise help with the side effects?
Mr. Le Gate: Exercise does. I have backslid some, but until about a year ago, I had a trainer. I went several times a week. I took a 12-week course of training sponsored by a local cancer organization during the intermittent period and it was very beneficial. Should I get the motivation to get back to exercise, it would help me a lot. I am still active and hands-on in my profession. I’m a general contractor. It’s a pretty active job, and I’m up and down all the time. But I learned very quickly once I started aerobic exercise, that it’s more effective than getting up every morning and putting on my tool belt.
Is there anything else that you do to manage the side effects?
Mr. Le Gate: Of course, the change in your mental state. When I’m not working, I’m a person who spends a lot of time reading, and before I decided to become a contractor, I had a pretty good education. I have some sense of my cognition, and I think that your overall mental state has an effect on how well you feel.
Did that go away when you went on the intermittent period?
Mr. Le Gate: It did. Most everything went away. I only had a year. During the intermittent period, I took that phenomenal 12-week course. We met twice a week for two hours of rigorous training, weightlifting—everything.
It was really eye opening for me.
Are you saying the exercise and training impacted the cognitive side effects you were feeling as well?
Mr. Le Gate: Oh, yeah. I think it did. I had some sense of that even before I had cancer. If you’re physically active, there is a positive mental effect to that. Again, some of these things are just so blurred. How much of it is due to aging, and how much is just the burden of a disease that— at this point—cannot be cured?
Stress, you mean?
Mr. Le Gate: Yes, stress. Also, I always have been a bit anxious. Now I think I have to be more careful about managing my anxieties. I mean, I think there’s so much of this disease that can be managed. You can manage it. I don’t have a metastasis. So I’m not in a worse position. I attend a monthly prostate cancer support group here in Sacramento, California. It’s one of the best things I’ve done. I’ve gotten involved in it, and I’ve actually had the good fortune to be asked to lead groups, come up with ideas, and answer folk’s questions. I’ve had a very healthy life and getting a major disease like this has been instructive. I started reading and writing more because of it, even just letters to the paper, letters to friends.
About your disease?
Mr. Le Gate: Not necessarily, no. I’m a political person on the progressive side. I have very strong opinions that I don’t mind sharing. Of course, I’m obliged to do more reading and be more thoughtful about my politics. I think having prostate cancer at this stage of my life has pushed me into this, and I take a great deal of satisfaction out of doing it now.
What advice would you have for a man diagnosed with this disease?
Mr. Le Gate: Find out all you can. Get involved in a group. Neither my oncologist nor urologist ever mentioned support groups. I discovered this just by chance when I was well into the recurrent part of my disease. Had I known that there was such a group when I was first diagnosed, I would’ve been better prepared to make decisions. Your doctor is a human being who can make good and bad choices. You need to be proactive.
I was fairly proactive, but when I first was diagnosed with the disease, had I known there was a support group, I would’ve learned about a number of other options. For example, there’s a group in San Francisco called The Second Opinion. Once you get a diagnosis— for no charge at all—you can meet with a group of doctors and discuss your options. I never knew there was such a thing before. Everybody who’s ever discussed the options thoroughly and looked at all sides of the coin can set their mind at ease before they make any decisions.
Are there other ways that the prostate cancer diagnosis might have had a positive impact on you?
Mr. Le Gate: After a lifetime without serious health problems, it’s not a bad thing to realize that you’re mortal. I think it’s made me more responsible about whatever time is left of me. I want to use my time the best way I can and to learn something, even if it’s just to learn something about the disease. There’s so much to learn about healthcare and the science of treating with medicine, but most people, if they’re healthy, simply ignore this. To be more informed in this way, and to have the disease yourself— if you’re smart and if you have a sense of humanity—you’re going to think about other people who have the disease and be more sympathetic to others.
The diagnosis has made you more—
Mr. Le Gate: Empathetic. I want to reach out to the people I see at my support groups because I know something about the disease, especially for those who have just recently been diagnosed. Because I know a bit more, because I’m old hat, if I’m able to do the slightest thing to relieve their anxieties and fears, that’s a good thing. I’m hopeful that I can put together some sessions at my prostate cancer support group where participants can discuss their mental state. At the last meeting, when I was asked to be the facilitator, I came up with the idea to put together a questionnaire, which would be voluntary and anonymous. I want to see what people have done to mitigate, find some distractions, and to discuss anxieties.
I’ve noticed in our group that we’ve discussed the mechanics more than the emotional. You have to be careful that you don’t make this into a weepy, touchy-feely thing. I’m trying to navigate it so that we can discuss our emotional things in a sensible way that’s helpful, that doesn’t make people more fearful.
You want it to be a positive experience?
Mr. Le Gate: Exactly. I was pleasantly surprised when I raised the point, which was so different than the things we usually talk about. We usually talk about where someone is in their treatment. The response was relatively positive from people.
It’s an Us TOO through the University of California Davis Medical Center and Dignity Health. We alternate between those two venues. I’ve been with this group about three years. I’m not a person who joins things, but it’s become an important part of my life. I have the support of my peer navigator, Bill Doss, and our Director, Beverly Nicholson. They are just fabulous people. I’ve really gotten a lot out of it, and I think others have too. It helps to be almost 75 years old and still have your wits about you.
To realize your experiences in life could be useful for a lot of other people. That’s what’s working for me.