NETWise: A Podcast about Neuroendocrine Cancer. What You Need to Know About NETs.

NETWise: A Podcast about Neuroendocrine Cancer. What You Need to Know About NETs.

February 27, 2020 1 By Jose Scott


Episode 1: What You Need to Know About NETs
Understanding the Basics of a Neuroendocrine Tumor (NET) Diagnosis Transcript You can find information about subscribing
to this series at netrf.org/podcast, where you’ll also find a bunch of helpful charts,
graphs, and videos that expend on this material. If you like the show and find it helpful,
please leave a review on whatever app you’re using to listen to it, and we’d also love
to get your feedback at [email protected] Welcome to NET Wise. This is a podcast for neuroendocrine cancer
patients and caregivers that presents expert information and patient perspectives. My name is Laran Hyder, from the Neuroendocrine
Tumor Research Foundation. For most of you who are listening to me right
now, that term, Neuroendocrine Tumor – or, NET for short – is a part of your life. You may have been recently diagnosed, or you
could be a veteran expert NET patient. Maybe someone you care about has NETs. In any case, you probably have questions. What exactly is a Neuroendocrine Tumor? What is it doing in your body right now? And what should you be doing about it? We’re going to do our best over the course
of this series to help you find answers to those questions. Through conversations with some of the best
experts on neuroendocrine tumors from all around the world, you’ll hear about what
NETs are, how they spread, and a lot about current best practices in diagnosis and treatment. You’ll hear fellow NET patients share their
experiences with their cancer journey. We hope this series will be your guide to
being NET wise. To begin with, let’s get very basic. What exactly is a tumor, and what is cancer? To understand the answer to that question,
you first have to understand something about structure of our bodies. Every part of your body – your skin, bones,
hair, blood, muscles, organs – they’re all made out of cells, and inside each of
the tens of trillions of cells that make up your body is an identical copy of your DNA,
a molecule that basically lays out the blueprint for building a you. When you get injured, the way your body repairs
that injury is that the healthy cells around it divide, making copies of themselves to
replace the damaged cells. This is also how we grow and make things like
hair and blood. Every cell in your body has this capacity
to copy itself. But every time a cell divides, there’s a
small chance that it won’t go exactly as planned. What can result, then, is an unplanned cluster
of cells somewhere in your body. We call this cluster a tumor. Here’s Dr. George Fisher, an oncologist
at Stanford University Medical Center: Fisher: “So, if you were to imagine that
any cell that’s capable of cell division all of a sudden acquired the ability to divide
without control, meaning one cell becomes two, two become four, four become eight, eight
become sixteen, then that lack of control of cell division would allow that individual
cell to become a lump, and that lump is basically what a tumor is.” So, “tumor” can be a scary word, but many
tumors really aren’t such a big deal. Fisher: “And this little mass, or lesion,
or bump – however you’d like to imagine it – is composed of abnormally-growing cells
that might not have acquired the biological characteristics that would allow them to
spread. So they just grow like a little lump, and
they might sit there and they might become a mole on your skin.” And so benign – meaning non-cancerous – tumors
can sometimes be uncomfortable, can sometimes even make you sick and need to be dealt with,
but they are called “benign” because they basically stay put and mind their own business. They grow in one place and only one place,
and when they’re removed or destroyed, that’s the end of it. Sometimes, though, we develop a tumor that
has other ideas. This tumor has developed a glitch in its DNA
that inspires it to not just copy itself uncontrollably, but to cause other cells it comes in contact
with to do the same, causing chain reactions of uncontrolled cell growth to spread wider
and wider around your body. This is called cancer, and as we all know
it IS a big deal, because it can often mean that these out-of-control clusters of dividing
cells can grow in such a way that they prevent your organs from functioning properly. Here’s Dr. Pam Kunz, Director of Stanford’s
Neuroendocrine Tumor Program: Kunz: “Tumors develop because cells, the
cell of origin, tend to divide out of control, and they become a cancer when they develop
the potential to spread to other places.” Your cancer happens to have started in a kind
of cell called a neuroendocrine cell. Everyone has these all over their body. They’re mainly in places like your gastrointestinal
tract, the lungs and airways, and the various glands all around your body. These cells make up a system that control
a bunch of important bodily functions – things like heart rate, blood pressure, air flow,
digestion, and lots of other things. They do this by being the meeting points between
two different kinds of signaling systems that keep your body running. You see, some of the cells in your body communicate
with each other by sending and receiving chemical signals, such as hormones, which are produced
by the endocrine system. Other cells though, such as the cells in your
brain, they run on an entirely different system of electrical signals – sending sparks of
electricity between the different neurons. Here’s Dr. David Metz, Co-Director of the
Neuroendocrine Tumor Program at the University of Pennsylvania: Metz: “So, there are cells in the body that
are neurons, they’re nerves, and other cells in the body that are endocrine cells that
form parts of glands, and these are all essential for normal function. So those cells are all over our body, and
you’ve got millions and millions of these kinds of cells that do regulatory functions
of hormonal balancing and control, nervous function, sensory, and motor, and keeping
everything together so that we are functioning normally. And in many of these places, like in the glands
that make those hormones, there’s a need for a group of cells that can bridge the gap
between those two kinds of signaling systems – receiving an electrical message from the
nerves and turning it into a chemical message. These intermediaries are your neuroendocrine
cells. Fisher: “It’s a translator, so it translates
a neurologic – which is really an electrical – communication to a hormonal – which
is a molecular – communication, where a molecule is released by a cell and goes and
attaches to a different cell and in so doing sends a message to that cell to do something.” Just like any other kind of cell in your body,
these neuroendocrine cells, they need to divide and replace themselves periodically, and when
they do there is a chance that a mistake might be made that will cause them to form a malignant
tumor. And because neuroendocrine cells are everywhere
in your body, neuroendocrine tumors can form just about everywhere also. About 25% of primary neuroendocrine tumors
begin in the lung. About 54% begin somewhere in the gastrointestinal
tract – 12% in the small intestine, 9% in the pancreas, and 29% elsewhere, including
the stomach lining, appendix, and rectum. Other sites or primaries of unknown origin,
they account for the remaining 21% of primaries. My name is Wendy Noll. I live in Raleigh, North Carolina. I am 37 years old. My story started a really long time ago. I was in vet school, I was 25 years old, and
I started coughing, actually while holding a dog, while working, and the veterinarian
that I worked for was kind of getting upset with me. He was like, “Well, stop coughing.” I was like, “I can’t. I can’t.” He listened to my chest with his stethoscope,
and he’s like, “Good God, Wendy. You sound awful.” I was like, “Well, I’m not sick. I don’t feel sick. This is so weird.” He said, “Go to urgent care right now.” So, I ended up going to urgent care, and the
physician there sort of said the same thing like, “Your lungs sound awful. Let’s take an X-ray.” He sort of diagnosed me with walking pneumonia. From the X-ray, he said that there was a little
spot there, and he wasn’t quite sure what it was. He put me on antibiotics. And then he told me, “You need to go see a
pulmonologist,” and I did. And the story continued there that the pulmonologist
said, “You’re 25, I don’t think that spot is anything. It’s probably a lymph node. Let’s go ahead and test you to see. Maybe you have asthma.” So I had a whole bunch of breathing tests. He put me on steroids and inhalers. And for months I would use the inhaler, and
I wouldn’t get better, so I was getting really frustrated. And so I got really upset. I went back to him and I said, “With all due
respect, I’d like to get a CAT scan. I’m really scared about this spot in my lung.” He was like, “Wendy, you’re really young. This is not anything to worry about.” Then he sort of, not angrily, but just wrote
the script to get the CAT scan. I went and had the CAT scan done. Literally, I just walked out the door from
getting the CAT scan done and he called me and he said, “I need to see
you in my office right away.” And I knew it. I knew that it just wasn’t normal. At that point, they had told me that it was
a carcinoid, so I went crazy looking for information One confusing term you may have heard as you
began to learn about NETs is “carcinoid”. What does that mean? This is a term that dates back more than 100
years and refers to the fact that most NETs are really very different from other kinds
of cancer. The main difference is that some NETs grow
very, very slowly. So slowly, in fact, that when they were originally
discovered, it was thought that they might not actually be cancer at all, so this new
term – carcinoid, which literally means “cancer-like” – was invented to describe
them. It’s a problematic term, though, because
as our understanding of NETs has increased, we’ve come to realize that they do behave
like other cancers – they just do it at a different pace. Here’s Dr. Eric Nakakura, a surgeon at the
University of California, San Francisco: Nakakura: “Neuroendocrine tumors, in general,
you often hear the description as being ‘cancers in slow motion’, because even neuroendocrine
tumors that have spread to other parts of the body, such as the liver, can be indolent
and not grow for months or even years. And so, this is in contrast to many other
types of cancers that have spread to the liver where week by week, month by month, there’s
clear, gradual growth.” And partially because of this “carcinoid”
label, physicians until very recently tended to misunderstand just how dangerous NETs actually
are. Kunz: “Neuroendocrine tumors, even as recently
as ten to fifteen years ago, were actually all classified as being benign. And I think that pathologists for a long,
long time called these benign, and thus so did
doctors taking care of these patients, and so then patients had this belief that these
cancers would never come back. And we now know that these in fact are cancers,
and they can grow and spread, and therefore they need to be treated as such. They need to be treated like cancers, and
therefore patients need to have appropriate surgeries and treatments, et cetera.” Metz: “In my mind, I think neuroendocrine
tumors, in general, are all malignant. They all have malignant potential. The number we usually quote is 60-90%. I think of them all as having the potential
for malignancy if you leave them alone long enough.” And what does that word mean, exactly – “malignancy”? Well, your cancer is named for its “primary”
site – the place where the very first tumor appeared, but that location is just the beginning. Like all cancers, NETs have the potential
to spread elsewhere. That tendency to spread is called “malignancy”,
and the new tumors that form are called “metastases” or “metastatic tumors”. The first place that most NETs spread is into
the lymph nodes that are nearest to the primary site. Lymph nodes are a kind of gland that work
as filters for harmful substances in the body. They carry oxygen and other nutrients to cells
and carry away waste products that flow out of the cells. It’s almost like the plumbing system in
your house. Here’s Dr. Dan Halperin, a medical oncologist
and researcher at the MD Anderson Cancer Center in Houston: Halperin: “So a lymph node is basically
a docking station of immune surveillance, as fluid tracks back to the circulation from
really any end organ. So as blood pumps into any organ, so the fluid
pressures basically push some of the water out into this space – the lymphatics – and
then that will drain back through these little docking stations where we find these various
immune cells.” And for many cancers – including NETs – this
lymphatic system is the way they most often travel from one place to another. Halperin: “And the presence of cancer in
lymph nodes is a way of saying that the cancer cells have made their way into that lymphatic
network and are moving and surviving within that lymphatic network, and so the presence
of cancer in the lymph node is an indicator that that cancer has the ability to travel.” The more a cancer spreads, the more serious
it is – and managing and treating the spread, it generally becomes more urgent than dealing
with the original tumor. Halperin: “We typically think of cancer
in terms of what we call a TNM hierarchy, or ‘tumor, node, metastasis” hierarchy,
and this is how we stage the cancers. And we consider them sort of in order of importance,
so the tumor is the initial site; and then if it moves to the lymph nodes, that’s more
important that what’s going on at the local tumor. And similarly, if it moves and metastasizes,
and we’re dealing with disease in the liver or the bone or somewhere else, that really
takes precedence over what’s going on in the nodes or the primary tumor, particularly
from a, say, prognostic standpoint.” The distance cancer has spread from its primary
location is referred to as the cancer’s “stage”. This is an important metric in determining
how it should be treated: Kunz: “‘Stage’ refers to where in your
body is the cancer. So let’s use, as an example, a pancreatic
neuroendocrine tumor – so that, just by definition, would mean that it started in
the pancreas, and that could be a Stage 1, 2, or 3, depending on where it is in the pancreas
and whether or not there are lymph nodes involved. Once it spreads far outside the pancreas,
so for example to the liver or to the lungs, that by definition would be a Stage 4. There are only four stages, and so
four is the most advanced stage, and by definition that means it is metastatic, or has spread.” NETs metastasize is a way that can be different
from almost all other cancers. The metastases of NETs usually grow much bigger
and faster than the primary tumor. Here’s Dr. Xavier Keutgen, a surgical oncologist
from the University of Chicago Medical Center and director of their Neuroendocrine Tumor
Program: Keutgen: “Classic cancers usually have a
larger primary tumor and then a small amount of lymph node metastases or distant metastases. Neuroendocrine tumors, it’s a little different
– often we see very small primaries, especially for small bowel, but a really significant
amount of lymph node metastases and an even higher burden of distant metastases.” Metz: “Neuroendocrine tumors are upside-down
tumors, in which the primary is tiny, the lymph nodes are a little bit bigger, but the
spread to the liver and bones and everywhere else is formidable.” Metastases happen in places that pieces of
the primary tumor can find a way to get to. For example, with NET primaries in the small
intestine and pancreas, metastases can occur in the abdominal cavity that surrounds these
organs. Fisher: “Neuroendocrine tumors that arise
in the pancreas and in the gut can literally just go through the wall of the colon or the
appendix or fall off of the pancreas and land in the fat in the abdomen and find a place
to grow there. We call that “intraperitoneal seeding. It’s really the simplest kind of spread,
because if you can imagine the tumor that makes it through the wall of whatever organ
it’s in, and then seeds from that tumor individual cells can literally fall off and
just land anywhere in the abdomen. If they survive the fall and land in a place
that’s fertile ground, and if they can then recruit a blood
supply to feed them, then that individual seed can become a tumor of itself.” But the most usual way for these seed cells
to travel is the way most things travel around the body – through the blood stream. Because of this, the very most common site
for small intestine and pancreas NETs to metastasize is your liver, because that’s the first-place
blood from the small intestines and pancreas goes. Here’s Dr. Ed Wolin, an oncologist who is
the Director of the Center for Carcinoid and Neuroendocrine Tumors at Mt. Sinai in New
York: Wolin: “Neuroendocrine tumors that start
in the pancreas or the intestine preferentially go to the liver when they metastasize. The tumor cells go into the blood supply that
leaves the pancreas and leaves the intestine, which is called the portal vein, and that
vein goes directly to the liver to filter the blood. So it’s a bypass track that takes the tumor
to the liver, so the liver gets a big dump of cancer cells before the rest of the body. And that’s why you see people with neuroendocrine
cancers sometimes that have 20, 30, 40 liver metastases and don’t have much else in their
whole body.” And because of the strange, “upside down”
nature of NETs, the metastases are generally much bigger than the primary tumor that seeded
them – and it’s very often these liver metastases, not the primary tumors, that cause
the biggest health problems. Here’s Dr. Thor Halfdanarson, an oncologist
at the Mayo Clinic in Minnesota: Halfdanarson: “So, the number one cause
of a decreased lifespan in neuroendocrine tumor patients are liver metastases that become
so overwhelming that the patient gets into liver failure.” Other kinds of NETs, like lung NETs for instance,
they metastasize differently, because the blood flow is different. Wolin: “Lung neuroendocrine tumors, when
they metastasize, don’t go directly to the liver the same way that intestinal and pancreatic
ones do. The cancer cells go into the bloodstream,
they go all over the body, and you don’t necessarily find a lot of cancer in the liver
if you don’t have a lot of cancer everywhere else.” NOLL: So, this was 2005. I had three-fourths of my right lung removed. After that, I went on to live my life. I got checked every three months, then every
six months, then every year via CAT scan of my chest, and everything came out clean. I got married to a wonderful, handsome man. I had a beautiful daughter eight years ago. Then I had another beautiful daughter two
and a half years ago. There was a point where it was my seven-year
checkup, and I got a new oncologist. He said, “You know what, Wendy? It’s been seven years. This cancer is not going to come back.” He’s like, “We don’t even need to do these
CAT scans on you anymore. Probably let’s do it every five years.” I was like, “Whoa, that’s awesome but so scary
and I’m not comfortable with every five years.” He’s like, “Okay, how about every three years?” I said, “Okay, let’s do three.” Three years went by and I went and had my
CAT scan done. He said, “Wendy, I see some changes, and there’s
something in your liver, and also some lymph nodes are larger. Let’s get an MRI.” They fit me in that day. And then I called the doctor and he called
me back that night and he said, “You have tumors all over your liver. There’s also some in your pelvis, in your
spine, and all throughout your lymph nodes.” And then the biopsy came back and it was determined
that it was the same cancer as my original tumor, but now they were calling it neuroendocrine
tumor. Wherever a primary NET appears, and wherever
it metastasizes to, NETs can be difficult to diagnose and very often misdiagnosed. This is also closely related to their bizarre
upside-down nature. Because the primary tumors can be much smaller
than the eventual distant metastases, NETs are often not discovered until after they’ve
spread, which might be many years after they first began. Fisher: “The problem with neuroendocrine
cells is that we don’t really see the benign cells. We don’t have a way of detecting them, and
oftentimes when they’ve grown they’ve already spread by the time we can first diagnose
them, so they tend to be diagnosed at a point when most patients already have spread of
the disease.” Often, NETs aren’t discovered in the body
until they begin to cause symptoms. One way they do this has to do with the fact
that some NETs are what we call “functional” tumors. This means that they have the ability, like
healthy neuroendocrine cells, to produce hormones. These extra, unwanted hormones can cause a
whole range of different problems in your body. These functional NETs can be referred to by
the name of the hormone they produce – so a NET that produces the hormone gastrin, for
instance, can be called a “gastronoma”, or one that produces glucogon that’s called
a “glucogonoma”. Kunz: “Going back to the terminology – neuroENDOCRINE,
they have the word ‘endocrine’ because they share these endocrine features of secreting
hormones. One of the classic examples of that for small
intestine NETs is that the tumor can secrete a hormone called serotonin, and serotonin
can cause things like flushing of the face, which is sort of a periodic redness of the
face, or really watery diarrhea.” That particular set of hormonal symptoms that
Dr. Kunz just mentioned is called “carcinoid syndrome” and can be typical in NETs that
have metastasized to the liver. We’ll talk about functional NETs and the
various syndromes they cause in depth later in this series. But for now, there’s a big problem here
in terms of diagnosis. Those symptoms – diarrhea and redness of
the face – they could be caused other things that are much more common than a neuroendocrine
tumor. This is true for most of the symptoms associated
with NETs – stomach pain, jaundice, persistent coughing – all of them could be caused by
something that most doctors would see in a patient every day, rather than an uncommon
condition like NETs, which they might never have seen before in their entire career. Fisher: “You know, to be honest, neuroendocrine
tumor is a rare cause of diarrhea. There are far more common causes of diarrhea. And so, you know, if you go to see your internist
and you say ‘jeez, I have diarrhea’ and he’ll say ‘well, how many times a day’,
and you say ‘three or four times a day’ and he’ll say, ‘well, go ahead and take
some Imodium’, or they’ll do a stool test to see whether you have an infection, or they
might even do a colonoscopy and look for inflammation of the bowel and decide that you don’t have
any inflammation and therefore you’re OK, and just take these medications.” Metz: “So it’s not often that you make
a diagnosis of gastronoma, but you see a whole lot of ulcers. It’s not often that you make the diagnosis
of carcinoid syndrome, but you’ll see a whole lot of middle-aged women who are menopausal
and have flushing and diarrhea. So the patient gets labeled as having irritable
bowel syndrome and maybe being perimenopausal when they really are showing the carcinoid
syndrome, or the patient gets labelled as having a typical ulcer and heartburn and reflux
disease when they’ve really got Zollinger-Ellis syndrome and a gastronoma.” One in two neuroendocrine tumor patients is
initially misdiagnosed. On average, people have symptoms for five
years before learning they have a neuroendocrine tumor. When it takes that long to obtain an accurate
diagnosis, cancer can spread. More than half of NETs spread beyond the primary
site before they are diagnosed. My name is Marilyn Kline, and I’m a neuroendocrine
patient, cancer patient. I was diagnosed in June 2017. I’m pNET, pancreatic NET in the tail with
mets to the liver. That is my official diagnosis. My story is not unsimilar to many others I’ve
heard where I had symptoms of not feeling correct for a number of years. But for me, it actually started Labor Day
2016 where I had an internal bleed. I ended up in hospital with something called
Dieulafoy lesions, which I had never heard of. I had to look it up. They went in and clipped it and shut it and
then they said, “Oh, you’re fine, you’re healthy, nothing to worry about,” and I didn’t believe
that. So I asked for a GI consult, which I got,
who also told me I was fine, healthy, nothing to worry about. My questions, of course, were “Well, should
I change my diet? Should I be exercising more? Should I have a colonoscopy more frequently?” I had all these questions. But this GI doctor said, “No, you’re perfectly
healthy.” I did have a pain on my left side which now
I figure was the primary tumor in the pancreas. But again, this is a story that I hear a lot
from other NET patients is that they would go to doctor after doctor after doctor and
everybody would say, “Well, you look fine, you look healthy, you look great, nothing
wrong with you,” until you get the CT scan or the PET scan or both, and they show up
with the metastasis. The first diagnosis from my GI doctor was
“I’m not happy.” Let me see if I can get this verbiage, if
I remember this verbiage right. “I’m not happy with the way the scan looks. I’m going to get another one.” So I had another test. The first was an ultrasound. The second was a CT scan. After the CT scan, he said, “Well, it looks
like you’ve got lymphoma, but I want to verify.” So then I had a PET scan, and then he said,
“Oh, I’m really sorry, Marilyn. You actually have liver cancer.” That’s the point I said, “Doctor, I really
think I need to see an oncologist. I would like an oncologist consultant. That needs to happen in the next 24 hours.” And he said, “Oh, I’m not sure.” I said, “It needs to happen in the next 24
hours.” He got it. I mean I called about five times, but I got
to an oncologist in the next 24 hours. That’s who got me the biopsy, got me the right
PET scan, and got me the correct diagnosis. Another way a NET might cause the symptoms
that allow it to be diagnosed is through what’s called “mass effect”, meaning that the
size of the tumors get to the point where they’re physically blocking something. Nakakura: “So the prototypical small intestine
neuroendocrine tumor is a neuroendocrine tumor of the ilium, that part of the small intestine
just before the large intestine. And what happens with these tumors is that
they’re frequently diagnosed very late, only when patients start having symptoms,
such as abdominal pain, or they can actually have blockage or obstruction of the intestine,
where they’re vomiting and unable to eat. And what happens is that the tumor starts
in the wall of the intestine, spreads to the lymph nodes in the region, and causes a scarring
reaction, what we call a mesenteric mass. It’s actually a ball of tissue that’s
very, very hard. And that mesenteric mass then kind of kinks
and buckles the intestine, causing a blockage. And it’s the development of this blockage
that leads to abdominal pain, often when they eat large meals or food that’s hard to break
down into small pieces. And ultimately, when they get blocked, that’s
when they end up in the hospital, when they’re vomiting.” That’s just one way a mass effect might
occur – anywhere that a blockage might get in the way of some important bodily function
can be a place that a NET may cause symptoms. These could range from a tumor in the liver
blocking a bile duct, and thereby causing jaundice, to a tumor in a lung blocking a
bronchial tube and causing persistent coughing. As we heard, the liver is a hot spot for NET
metastases, and ironically, the natural resiliency of your liver can often work against the discovery
of metastatic NETs. Fisher: “Another curious thing about neuroendocrine
tumors is that you can sometimes see large lumps in the liver, sometimes the size of
several softballs, occupying valuable real estate in the liver and crowding out normal
liver. What then can happen is that the normal liver,
which has the ability to grow to replenish itself, can get bigger and bigger and bigger
as the tumors occupy more and more space, and the person can have a lot of disease in
the liver and still have completely normal liver function and feel perfectly well.” That may seem unbelievable – that a tumor
could grow to the size of a softball or even bigger before someone notices that it’s
there – but the fact is no one is going to do the things required to discover a tumor
unless they have some reason to look for it. And with many NETs, the noticeable symptoms
that would cause a doctor to look for a tumor, they don’t appear for a long time, or they
don’t appear at all. Because of these challenges, one of the most
common ways that NETs are diagnosed is by accident. Imaging technology platforms like CT scans
and MRIs – they are being used more and more routinely, and because of that, it’s getting
more and more frequent for a NET to be picked up on a scan, a scan that was being done for
and entirely different reason. Halfdanarson: “So these are patients who
come in, have a scan for a kidney stone and we find a pancreatic neuroendocrine tumor
which might have been there for years, and could have been there for another 10 years
without anyone knowing, but just because we’re doing so many more scans, we pick up so many
more tumors.” Fisher: “So we get so many scans now, CT
scans in emergency rooms, for people who ate a bad taco, come in with a belly ache, and
they get a scan, and they may see that there’s a spot on the pancreas, or they may see that
there’s a spot in the liver, or multiple spots in the liver, and they get a biopsy
and then they’re told that they have a neuroendocrine tumor that has spread. It’s always a scary thing, and to imagine
that all of a sudden you’re diagnosed with a terrible disease when you feel pretty well
must be devastating and confusing.” It’s not only scary and confusing to have
been misdiagnosed or accidentally diagnosed with something like cancer, it’s also really
frustrating. How could my doctors miss something so important? A popular metaphor that is often taught in
medical school is “when you hear hoofbeats, you should think horses, not zebras”. And this makes sense, generally speaking. As a primary care doctor, your orders of magnitude
are more likely to be dealing with something other than an uncommon cancer when someone
comes in complaining of diarrhea, stomach cramps, a persistent cough, or flushing. But the problem, of course, is that zebras
do exist. And, NET patient, you are a zebra. The good news is that there are more fellow
zebras out there than you might think. It’s an interesting thing that, because
of this slow-motion pace of some NETs, while a new diagnosis of a NET is much less common
than many other kinds of cancer, there are a lot of people living with NETs, more, even,
than with much more well-known diseases. Halfdanarson: “They are actually common
in terms of how many patients are out there with neuroendocrine tumors. We don’t have a ton of new diagnoses per
year, but just because patients with neuroendocrine tumors live long compared to many other cancers,
the number of patients with neuroendocrine tumors at any given time is fairly high.” Halperin: “So there are hundreds of thousands
of people walking around the United States right now with neuroendocrine tumors,”
Wolin: “That’s more than the number of Americans with stomach cancer plus pancreas
cancer added together, which is phenomenal because everyone knows about stomach cancer
and pancreas cancer, but they don’t think about neuroendocrine cancer.” Halperin “So while not that many people
will get diagnosed with it, it’s not as uncommon to meet someone who’s living with
a neuroendocrine tumor as you might think.” But because of those numbers, more and more
people are becoming aware of this disease, and more and more researchers are joining
the fight against it. This means that there are actually quite a
few treatment options that are available for NET patients – from surgery to medicine
to nuclear medicine – so NET patients are surviving, and even thriving, for longer than
ever. In the next episode we’re going to talk
about how your doctors learn all they can about your particular tumor, and how that
information will determine a course of treatment. Then in the following episodes we’ll look
at all of the most popular treatments options currently used for NETs, and we’ll give
you as much information as we can about how they’re best used and when and why, and
what you can expect if you receive them. So stay tuned, all of that and more for living
your best life even while you’re living with NETs. Thank you, listener, for tuning into NET Wise. My name is Laran Hyder. I’m the Director of Education and Outreach
for the Neuroendocrine Tumor Research Foundation and I executive produced and co-wrote this
series. It was produced and co-written by David Hoffman
of CitizenRacecar. This episode made possible by the generous
support of Advanced Accelerator Applications, a Novartis Company, Lexicon Pharmaceuticals,
and the Vincent E. Taylor Patient Education Fund. Special thanks to everyone we interviewed
for this episode. We are grateful for your expertise. This is a production of the NET Research Foundation,
where we’re committed to improving the lives of patients, families, and caregivers affected
by neuroendocrine cancer. We fund research to discover cures and more
effective treatments and to provide information and educational resources. Please visit us at NETRF.org This podcast is not intended as and shall
not be relied upon as medical advice. The Neuroendocrine Tumor Research Foundation
encourages all users to discuss any information found here with their oncologist, physician,
and/or appropriate qualified health professional. Listening to this podcast does not constitute
a patient-physician relationship. The Neuroendocrine Tumor Research Foundation
does not represent that any information provided here should supplant the reasoned, informed
advice of a patient’s oncologist, physician, or appropriate qualified health professional.