http://www.curetoday.com/expertconnections/carcinoid-improving-qol/sylvias-story-relapse-with-a-neuroendocrine-tumor
Sylvia's Story: Relapse With a Neuroendocrine Tumor




Transcript: 

Robert Ramirez, DO, FACP: After your surgery, did your symptoms go away?

Sylvia Lubrano: For a while, yes. And then, I would say 5 years later, the episodes started again: more spaced out with not as short intervals in between each one. But they gradually occurred closer and closer together, and I said, “Hey, I know this pain. This doesn’t seem right. I know this pain.” And I was afraid, of course.

Robert Ramirez, DO, FACP: When your symptoms returned, you had it in the back of your mind that your cancer had returned.

Sylvia Lubrano: I did. I went online because I felt like the alien patient, and they just didn’t know what to do with me. So, I thought, OK, well, what do I do? They don’t know what to do. Perhaps I should look. And then I went online just searching, and I found other people’s stories that were very similar to mine. Many of them said, “It always returns; it comes back.” And I said, “No, mine’s not coming back.” I would read these stories and think, “That’s not going to be me. No, that’s not going to be me.” I remember reading, and you may know this from a doctor’s perspective, that an inch and a half to 2 inches is more likely to spread if you find it at that size, more so than a smaller tumor. My diagnosis had been delayed so long for the first time, and the same thing happened the second time.

Robert Ramirez, DO, FACP: So you went in and you had scans, and they had said, “There are some new spots, and your cancer has returned.” How did you find your way to our center?

Sylvia Lubrano: Let me see. Originally, they did an ultrasound and told me I had liver cysts, but considering my history, they did a CT [computed tomography] scan. They did the CT scan, and at that point, I returned to my gastroenterologist’s office, and he told me it had returned. He said, “I don’t know where to send you. I don’t know what to do with you.” I said, “Thank you for being honest, doctor. I have read online that this does come back,” and I just told him the stories I had read, and he was amazed. I figured if he didn’t know what to do with me, I needed to make it my business to know what to do with me. That’s when I searched for y’all. I live in Ponchatoula. I’m an hour away. So knowing that just made me feel not like the alien patient anymore, and I’m thankful for that.

Robert Ramirez, DO, FACP: You met with my partner, Dr Eugene Woltering, initially.

Sylvia Lubrano: Right.

Robert Ramirez, DO, FACP: And then he referred you to Dr Phil Boudreaux and Dr. Yi-Zarn Wang. What was that experience like?

Sylvia Lubrano: Just a relief, a relief that I knew somebody understood and knew where to guide me. I’m not lost anymore, and to me that’s everything.

Robert Ramirez, DO, FACP: They initially started you on a shot, Sandostatin [octreotide].

Sylvia Lubrano: After my surgery.

Robert Ramirez, DO, FACP: You had surgery first. What was that experience like, having to go through that again?

Sylvia Lubrano: And more extensively to boot. It was rough, I’m sure, but you just pick your lip up and move on. It wasn’t my first rodeo, and I was determined to get through it again. It was terrible in the beginning, but then every day got better and every day after that. I was taking octreotide initially, and it keeps the diarrhea in check, which is awesome. I look for a bathroom everywhere I go. That had gotten a lot better. But that’s everyday life, that’s a big thing. That’s what it did for me.

Transcript Edited for Clarity 
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