Improving Quality of Life for Patients With Carcinoid Syndrome - Episode 9
Robert Ramirez, DO, FACP: We are pleased to welcome Mrs. Sylvia Lubrano, who is a patient at the LSU [Louisiana State University] and Ochsner Neuroendocrine Tumor Program and is going to tell us her story. Sylvia, tell us how this all got started.
Sylvia Lubrano: It’s a long journey, Dr. Ramirez. It started in 1999. My brother lived in Texas, and we would take road trips, vacation, have a great time, and eat. We went to the Golden Corral. When you’re on vacation like me, you enjoy eating a little bit more—I’m honest—and so I did. Well, I paid for that. I woke up the next morning and my stomach was just in horrible pain. I thought, What is wrong here? There was something terribly wrong: I was flushing, and there were a lot of pit stops on the way home because my diarrhea was really awful. I was just hoping that I would make it home to the emergency department because I knew that’s where I needed to go. It was that bad. I made it there, and many other trips went exactly like that, 3 times. I asked, “Do I need to quit going to Texas? Do I need to quit going to Golden Corral?” But each time I went, they would tell me I had gastroenteritis or food poisoning. I kept thinking, This just doesn’t sound right. This is awful. These are violent episodes. But I would be fine for weeks or months in between.
Finally, I ended up in the emergency department, and they admitted me to the hospital at that point. I was in there, I was about to be married, and I was thinking, “Man, I have better things to do. I need to be out of here. I’m feeling better. Y’all can let me go now.” And they said, “OK, follow up with the GI [gastrointestinal] doctor after,” so I did. I went to him and I told him, “OK, I’m home from my honeymoon. I was scared I was going to have an attack out in the middle of the ocean on a boat.” They said, “You’re fine.” I said, “No, I’m not fine. I’m not fine.” I just begged for something more, but I didn’t know what. So he did an upper bowel series with a small bowel follow-through, and that’s when they found the tumor. They sent me home and said, “You’re going to sit by the phone and wait for the doctor to call.” They knew something was in there, but they didn’t know what. So when they did the surgery, that’s when they found it.
Robert Ramirez, DO, FACP: How long did it take from when you first started noticing symptoms until you actually had a diagnosis?
Sylvia Lubrano: Initially, the bad episodes, which I just described, started in April of 1998. I did not have surgery until August of 1999, so that’s nearly a year and a half.
Robert Ramirez, DO, FACP: A little over a year.
Sylvia Lubrano: That was tough. I was afraid I would never get a diagnosis.
Robert Ramirez, DO, FACP: And these are bad episodes. If you think back, can you remember any vague symptoms, abdominal pain, diarrhea, or intermittent flushing?
Sylvia Lubrano: Yes, yes, intermittent flushing and diarrhea were really bad. I look for a bathroom everywhere I go, and I carry underwear in my purse. Even in those days, for my whole life, so yes.
Robert Ramirez, DO, FACP: For years before you actually had a diagnosis, you were having symptoms of this.
Sylvia Lubrano: Definitely.
Robert Ramirez, DO, FACP: Then you went in, you had surgery, and they took this out and told you what it was. What was your understanding about what was going to happen moving forward?
Sylvia Lubrano: Well, my surgeon was a general surgeon. He was not an oncologist. After my surgery, I remember being in the hospital room, and I was alone at that time. The oncologist was in there. I had never met an oncologist, but I knew what they were for. I was upset, of course, when he told me. He said, “You’re not out of the woods yet.” I said, “Hey, I didn’t know I was in the woods to begin with. So thank you. I was afraid y’all weren’t ever going to find what was wrong with me.” Even with him telling me that, I was relieved. He said that they would follow me every year with an OctreoScan, and the OctreoScan didn’t show anything. So after the first 2 or 3 years, they quit and said that I was cured and that I needed no further treatment.
Transcript Edited for Clarity