Improving Quality of Life for Patients With Carcinoid Syndrome - Episode 16
Robert Ramirez, DO, FACP: Quality of life is of utmost importance with this disease. Patients have a multitude of symptoms when they come into the clinic for the first time. They may have diarrhea, flushing or wheezing, weight loss, abdominal pain, and really a miserable life for a number of years. When I see these patients, my goal is to try to improve that quality of life. I often tell my patients, “This is going to be a journey, and we’ve got several different tools that may potentially work for your particular cancer. We’re going to try these and exhaust these to see what works and to see what doesn’t work.” And I often say, “If I’m giving you a drug that I think is going to work for your cancer but it is putting you in bed all day and making you miserable, that’s the wrong drug for you.” We’re focused on a disease that I’m not going to cure. Quality of life is one of the most important things we look for.
Neuroendocrine patients come to us from all over the country. They tend to be very well educated, and when I first started treating neuroendocrine cancers several years back, many times patients knew more than I did about their cancer. They’re very good at picking up clues from other patients and saying, “Oh, maybe I should ask my doctor about this” and “Maybe I need to be on this particular drug” or “This clinical trial is coming down the road, do you have this? Do you have this particular treatment?” With the internet, there are lots and lots of different support groups out there, so patients come to us with questions that they’ve heard online and they say, “Well, am I a candidate for this? What do you think about this?” Many times, these are very good questions and we say, “Oh, yes, maybe you are a candidate for this. I’m going to send you here to have this done.” It’s good that patients are able to do that and that patients are able to connect.
We see patients from all over the country, so we work with the local oncologist to help facilitate that particular patient’s care. So, when a patient comes to New Orleans but they live in Nebraska, for instance, there may not be a neuroendocrine expert at that particular site. That’s OK, because we can provide them a roadmap of care to send back to the local oncologist. We’re open to phone calls, emails, and all of these things that go along with that long-distance relationship.
I think patients need to really become their own best advocate. You’ll hear stories about misdiagnoses for years and years, and I hear this every day. A patient is misdiagnosed, a patient is put on the wrong treatment, and a patient is told they only have a few weeks to live. They come to me and I’ve got to try to back pedal and say, “Well, actually, this is what you have and this is what we expect to happen. Hopefully, you don’t have just 2 weeks to live.” I think if they have 2 years or 20 years left, I can say, “Yes, this is something that you’re going to die with rather than from.”
Transcript Edited for Clarity