Carcinoid Syndrome as a Chronic Disease

Transcript:

Shubham Pant, MD: So, Larry, when you first met Dr. Morse, what kind of questions did you have for him? You had done all your research before or did you do it after?

Larry Pleasant: No, I hadn’t. I didn’t have time to do the research before because I saw him literally within just a matter of days from my diagnosis.

Shubham Pant, MD: And what kind of questions did you have for Dr. Morse on the diagnosis?

Larry Pleasant: I think I had the general questions that everyone has: What does this mean? What kind of cancer is this? How do we get rid of it? How do we make it go away? Those sorts of questions. Because, frankly, I think initially, at least, I was in some denial about this as a long-term disease. My assumption at first was, “We’ll cure this and it’ll be gone, and that’s the end of it.”

Shubham Pant, MD: And that’s the first thing Dr. Morse told you when you met him? That it’s not going to be a short-term disease, it’s going to be a long-term?

Larry Pleasant: Yes, that that is going to be a long slog; it’s going to be a long-term process and that’s what I’ve been dealing with for the past 6 years.

Shubham Pant, MD: And then how long did it take you to accept that? Was it in the first moments, or did it take a little bit of time to accept that, that this is going to be a long-term disease? That it’s more like a chronic disease, that you have to get treatment for some time and you’re just going to have to live with it, live with the side effects, and then try to control the side effects?

Larry Pleasant: It took quite a while. It took months for me to really come to grips with that. Because I was always very active, I saw myself as not unhealthy at all.

Shubham Pant, MD: I think you’re very healthy.

Larry Pleasant: Well, yes. And I tell people today that if I didn’t have cancer, I’d be perfectly healthy because I have no other underlying health problems. And it just didn’t seem possible that this could happen. So, it took me a while to cope with it.

Shubham Pant, MD: Is that typical, Dr. Morse? When patients see you, what is your normal discussion? Because, again, it’s a long-term thing. It’s not short term where we can resect this or do this. Tell us a little bit about what is a carcinoid tumor, and what should patients expect when somebody else has given them the diagnosis and show up at their oncologist’s office?

Michael A. Morse, MD: The first thing we want to make sure is that we have a common language. We make sure we’re talking about the same thing. People will say, “Well, they have liver cancer.” They don’t have liver cancer. They have a neuroendocrine tumor that spread to the liver. They may say that they have an intestinal cancer, or colon cancer. It’s true that they start in the intestine, but they’re not the typical kind of colon cancer that people think. And it’s also important to understand that there’s a broad range of how these tumors behave. They’re the well-differentiated low-grade tumors that grow slowly over many years. Then there are the high-grade tumors. They’re fully differentiated, they grow very rapidly. It’s important to distinguish between the prognoses of those different types and also the prognosis of the more common types of cancers from those locations.

I think it helps people to be able to talk with their loved ones and friends also, so they can explain to them what they have and what to expect for the future. And also, I think—and I’m obviously speaking for you—my perception is that when people are first told they have a cancer and it has perhaps spread to the liver, what stage is it? If it’s at stage 4, it’s metastatic and that can be very devastating. Then you realize that this is a tumor you can have for many, many years and still survive, be active, and have your regular life activities. What I’ve also seen is some time after that, people are, at first, a little relieved to find out it’s not bad as…

Shubham Pant, MD: As it could be, yes.

Michael A. Morse, MD: But they’ve got many years of constantly having to deal with a chronic illness and everything that it brings along with it. So, I see a lot of ups and downs when people are going through the process; you could speak of that.

Larry Pleasant: Yes, I would agree. In my case, you’re exactly right. I passed the point where I considered it to be an immediate life-threatening illness, and that made me feel a great deal better. But then I reached the point of thinking of it as something that I’ll be living with for the rest of my life.

Shubham Pant, MD: And getting treatment for the rest of your life.

Larry Pleasant: And then have treatment for the rest of my life. I tried very hard to come to an analogy that would help me. I began to look at it more as a disease like diabetes, something that you have that is chronic but can be treated, and with the proper treatment, your lifestyle doesn’t have to be radically different.

Shubham Pant, MD: And what was the conversation with your loved one? Like with the loved one, do you sit down with them and go, “OK, this is it, this is diagnosis”?

Larry Pleasant: Well, my wife is a nurse and that helps, although she had not heard of neuroendocrine cancer. But she is a nurse and so she understood from the beginning more about this than I did. Our daughter was less understanding and is very much like me. Her reaction was very much like mine: fear in the beginning and then a reaction that turned to the realization that we could deal with this because it was a long-term disease and we’d manage it.

Transcript Edited for Clarity