Gastrointestinal and Pancreatic Neuroendocrine Tumors (NETs) are now ranked as the second most prevalent GI malignancy behind colon cancer. Flushing and diarrhea are just a few of the most common symptoms of this rare disease, which can be difficult to diagnose. Gastrointestinal and Pancreatic Neuroendocrine Tumors (NETs) is still not well understood by many in the medical community, and as a result, many people with NETs may wait 5 to 7 years to receive a diagnosis. Neuroendocrine surgical oncologist, Dr. Eric Liu joined me for an interview yesterday to discuss this rare disease, from the most common signs and symptoms to why Gastrointestinal and Pancreatic Neuroendocrine Tumors (NETs) is often misdiagnosed and much more.
Candace Rose: What are Gastrointestinal and Pancreatic Neuroendocrine Tumors (NETs)?
Dr. Eric Liu: “These are unusual tumors that come from the digestive tract and naturally can come from the lungs as well too. They come from small cells that normally control your breathing and your digestion. Unfortunately they can be very slow growing and can be very difficult to diagnose. Some people actually take five to seven years before they receive the right diagnosis.
Neuroendocrine tumors are the tumor that we want to create awareness about because it might be a cause of patients symptoms and might be very difficult to diagnose, so hopefully if you think about it, it might be what’s causing the problem.”
Candace Rose: Why are they so often misdiagnosed or diagnosed late?
Dr. Eric Liu: “It’s such a challenge. Just imagine the symptoms are really the problem. They can be quite varied, they can be very common and they may even have no symptoms at all. Just think about it – if you have a symptom such as flushing or diarrhea or abdominal pain these can be very normal common things that can be caused by other issues, even things like wheezing or recurrent pneumonia. If it lasts for longer and your treatments don’t seem to be working, then we want people to think gosh could it be caused by something else? Maybe even something unusual like a neuroendocrine tumor or neuroendocrine cancer.”
Candace Rose: How long should you wait to see if your symptoms will improve before contacting your physician? Is it a week, a month or longer?
Dr. Eric Liu: “I can’t tell you for sure because everyone is a little bit different, but definitely if it lasts for a few months let’s say, and something is not working and the treatments aren’t working, you definitely want to regroup with your physician and think about other possibilities. Either the treatment is not quite right or maybe the diagnosis is incorrect, so make sure you always team up and work closely with your physician. One of the things we encourage is for people to empower themselves and be proactive through education and information.”
Candace Rose: What are some of the signs and symptoms of NETs?
Dr. Eric Liu: “It can be quite varied, Candace. As I mentioned before, you can have things like flushing or diarrhea or abdominal pain, but you can also have other symptoms like diabetes, you can have wheezing, you can have recurrent pneumonia, you can have pain in your joints, you can have even rashes. You can see how difficult it is to diagnose becuase there’s so many different types of symptoms.”
Candace Rose: What questions should people bring up with their doctor if they are concerned about their gastro issues?
Dr. Eric Liu: “Well, the most important thing is always to not be afraid to talk to your physician. He or she is there to work with you to make you feel better and to really figure out what’s happening with your health. Always just know that you can have an open dialogue with them.
If you want to ask questions, things like ‘Is my diagnosis correct? My treatments aren’t working. Does that need to be modified? Do we need to think about something else? Could it be something strange and unusual like a neuroendocrine tumor? Are we missing something here?’ These are things especially when the therapy isn’t working or it’s been lasting much longer than seems appropriate, then you want to make sure you have an open and comfortable conversation with your physician. Remember our goal for you is to always feel better and for you to have a better quality of life, and that may even require a second opinion, so that might be something you want to enquire about it.”
Candace Rose: Are there any resources that can help patients with these resources?
Dr. Eric Liu: “There are a lot of resources, in fact one that we’re very excited by is a new website called KnowYourNets.com. There’s a lot of information there. It’s on the signs, the symptoms, the disease process, what it is, how you treat it and kind of what to expect. It’s a great place to get an overview of these neuroendocrine tumors and to explore the possibility. If you have the diagnosis, to give you a sense of exactly what the disease is.”