Susan F. Slovin, M.D., Ph.D.: We’ve spoken about Andy’s oncologic history today, but we really haven’t talked about the actual treatment and some of the treatment associated side effects. So the treatment plan that we had outlined for Andy involved the use of abiraterone, prednisone and androgen deprivation therapy [ADT], with a plan to try to achieve both the biochemical and radiographic remission with then a hope that we could radiate the prostate, and the oligometastases as we call them, perhaps keep him on hormonal therapy for a year longer, and stop treatment with the idea of going for remission. I personally never use the term cure, as you and I have talked about.
Andy Rochester: You told me it’s all about chronic.
Susan F. Slovin, M.D., Ph.D.: If remission lasts until the day you die, by all means call it a cure. But you knew the treatment plan, we talked about whether we would be successful in reaching our goals, but clearly going on androgen deprivation therapy, the equivalent of a chemical induced menopause, is something that’s certainly not lightweight for a younger man, or any man for that matter. So how did you feel? I mean you had the treatment plan, you knew where we were going with it. We had a goal. We would not be assured of our goal, but did you have reservations? Did you find that going on the hormones just made you a little bit more worried about where we were going with this?
Andy Rochester: No, I had read enough. And so when I do my peer counseling, one thing I do is I send people to the Memorial Sloan Kettering Cancer Center site and other leading cancer centers to read. That’s where I guide all my reading. And I’d read about it. I read about the different opportunities, what the ramifications were. And I was perfectly happy to accept it, because for what it appeared to be in my situation, it seemed to be just the absolute way to go.
Susan F. Slovin, M.D., Ph.D.: Do you think it interfered with your quality of life in any way?
Andy Rochester: Well aside from getting used to wearing cardigan sweaters for the hot flashes, no. You know what it is, it just comes with some minor things that you have to adjust for, in my particular case. You have stupid things like the nails just don’t work anymore. And you get the hot flashes, but so does half the population get hot flashes, so I’m certainly not going to complain about that. I got a fan just like all of my friends who have hot flashes.
The other side effects of it, they were taken care of. One of the things is it causes constipation in my particular case. So proper diet and prunes, of course. But that’s the whole thing is you just look at it point by point. If you have a particular side effect that comes up with it, then I just address it and move on.
Susan F. Slovin, M.D., Ph.D.: If you had a patient who was somebody you knew and they wanted recommendations for some sort of resource finding in terms of information, education, is there any particular area of information that you would be referring them to? American Cancer Society, CancerCare, anything like that?
Andy Rochester: Exactly. What I try to do is, in the peer counseling I do, is to try and keep people away from the open internet. There’s so much misinformation out there. People come to me and say, so, have you heard about frankincense? Have you heard about all the different things that have come through the thing. And it’s like, “No, I drink water, and I stick to a very strict diet,” and I sometimes will just say, ‘I’m sorry, I don’t think my oncologist would approve of that.”
So I’ll sometimes use you as my protection against it. But the catch is that I have gone to, for instance, Sloan Kettering and Mayo Clinic and Dana-Farber Cancer Institute. Everybody’s got these, and I tell them, you need to stick with the top tier organizations. They have lists where they’ve already done testing for, so what about pomegranate? Well if you go to these sites it’ll say, “Guess what? There have been 390 studies about pomegranate juice, here’s what we learned.” So I don’t do supplements. I stick with a very simple diet, and I follow, to your point, the sites that are trustworthy.
Susan F. Slovin, M.D., Ph.D.: Right. So during your treatment obviously there are a lot of issues. Did you feel that was adequate communication? Did you feel that all your needs were being met? We’re not talking from a PR [public relations] standpoint.
Andy Rochester: Oh no, just from a function standpoint.
Susan F. Slovin, M.D., Ph.D.: But in terms of relaying the information, and you’re right, from a functional standpoint, was there adequate communication among the teams? When you went to radiation oncology did you feel that everybody knew what was going on with you? That’s the most important concern.
Andy Rochester: Yes. I’d walk into radiology and he’d say, “So, Dr. Slovin is planning this,” and I’d come back and you’d be telling what radiologist … so I could definitely feel the communication was going on. And there was also a very nice buffer that was going on between the research fellows and the residents and the staff. You never really had to worry about having a question that wouldn’t get answered. A phone call or even just a simple thing and you’d get an answer back right away.
So that’s really the key. It’s really this team approach that you’re alluding to. I think it’s worked well for me. I’ve come in with some of my own ideas cause as you know, I pretty much designed all the rest of the plan that you hadn’t already designed for me in terms of rebuilding my body. And just having you to be able to work together with me, I felt like it was a partnership.
Susan F. Slovin, M.D., Ph.D.: That’s great.
Andy Rochester: I know in the beginning there were some reservations about this redo that I was going to do. And you’ve been most supportive of all my endeavors.
Susan F. Slovin, M.D., Ph.D.: Thank you.
Andy Rochester: And it’s meant a lot. But yes, it’s got to stay top tier for the information feeds and stay away from all the other information, because there’s so much misinformation.
Susan F. Slovin, M.D., Ph.D.: So you’ve compartmentalized essentially.
Andy Rochester: Yes, I have.
Susan F. Slovin, M.D., Ph.D.: And that’s worked for you. But what about the emotional health? I mean there’s two aspects of hormonal therapy that really disturb people. One is the potential for cognitive issues. Some people say that they’re fuzzy, they can’t think, the memory. But for every article that’s ever come out, there have been equal numbers that say, “no, we don’t really see any cognitive issues.” That’s separate from the emotional aspect where some people say they’re very short tempered or they’re crying, or they’re just moody.
Andy Rochester: The work I’ve been doing basically with mindfulness has really helped with that so that I have taken a different approach to how I speak with people. And the baggage that I was carrying around, I’ve become aware of it; trying so that it doesn’t color the new interactions that I’m having. And, for the camera, I had to write down some things just to make sure that I didn’t forget them because, absolutely, when I started on, the full name of Lupron is…?
Susan F. Slovin, M.D., Ph.D.: Leuprolide.
Andy Rochester: Leuprolide, thank you. When I got near the end of the cycle, my memory faults dropped — I was having memory faults, and we talked about it.
Susan F. Slovin, M.D., Ph.D.: Yes.
Andy Rochester: And so then when I went on the abiraterone ….
Susan F. Slovin, M.D., Ph.D.: Abiraterone.
Andy Rochester: Abiraterone, thank you, I never really got a break from that. And so I do have small deficits in my short-term memory, but I deal with it. I write things down, etcetera.
Susan F. Slovin, M.D., Ph.D.: But you’re off hormonal therapy now.
Andy Rochester: End of this month.
Susan F. Slovin, M.D., Ph.D.: End of this month, OK. So we talked about your staying on for about a year after the radiation is completed.
Andy Rochester: Yes.
Susan F. Slovin, M.D., Ph.D.: But would you say that over time it’s gotten better or it’s still a little bit of a problem? Is it long term, short term?
Andy Rochester: It’s just short-term memory. All my long-term memories are intact, and I’m looking forward to, my therapy stops the end of this month.
Susan F. Slovin, M.D., Ph.D.: Yes.
Andy Rochester: And then when it stops, I anticipate my short-term memory will be back, because I saw it cycle down a little bit and then come back again. So I fully appreciate it’s going to come back. If it doesn’t, I already have dealt with putting other practices in place: notes, reminders, etcetera. I have no problem with that. It’s done well by me. It’s like hot flashes. Many people get the hot flashes with it, too. But you know, that’s just part of it. You have to accept some of these things.
Transcript Edited for Clarity