By Adem Lewis / in , , , , , , , , , , , , , /

(music.) Neuroendocrine tumors,
known as NETS, are often hard to diagnose as symptoms vary widely
among patients and many symptoms are often mistaken for other
conditions such as irritable bowel syndrome. Once they are
finally discovered, tumors have often already grown or spread. We’ll take a closer look at
this Behind the Mystery story. (music.) I was tired all the
time and I was a young mom and so a lot of doctors just felt
that that was normal for you know having young children and
all that I knew there was something more I really just did
not feel well and so I kept pursuing it and I went to
different doctors and I was told a lot of different things
including that I was neurotic and finally I had an exploratory
surgery and they found a tumor in my small intestine my name is
Judy Golz I am 57 years old and I was diagnosed with
neuroendocrine cancer 15 years ago. Neuroendocrine tumors are
unusual tumors that start in the endocrine cells of our bodies we
have endocrine cells scattered throughout almost every organ in
our body but the most common sites for neuroendocrine tumors
to develop are the lungs, the intestine, or in the pancreas. I
had a wonderful surgeon who really was diligent in searching
nobody had mentioned cancer prior to me going in for surgery
and they felt very much that they were gonna find something
benign. Well there’s one common
hormonal symptom that’s associated
with Neuroendocrine tumors, that’s a syndrome called
carcinoid syndrome and one type of
consumers call the carcinoid tumor. When I woke up in the
hospital, I got the good news and the bad news. But the good
news is that they found it and at that point I was relieved
because I knew that there would be care you know that I would be
able to finally feel better. There are variety of different
ways to detect and diagnosis those ways include x-rays, CAT
scans, procedures like a colonoscopy, blood tests and
even recently some newer sophisticated radiologic
techniques that are specific to identifying neuroendocrine
tumors. (music.) So being
diagnosed with neuroendocrine cancer was a little bit of a
shock for me because when I did learn about the disease and I
educated myself on it I realize I didn’t have any of the typical
symptoms. When patients are
newly diagnosed they can come to us through our website,
there’s a tone of information. Everything from the basics to
the videos they can watch to information about upcoming
events, where they can to go a conference and learn more we
have a slogan in the community if you don’t suspect it, you
can’t detect it which means you have to be as a physician or
even a patient who’s being very proactive because they perhaps
have a diagnosis for a disease which they are not getting
better from. You have to be
proactive you have to consider carcinoid or another
neuroendocrine tumor as a diagnosis when the symptoms may
actually be symptoms that are of more common diseases but those
common diseases are not with the individuals have. So a patient
with a lung neuroendocrine tumor might have symptoms of cough and
wheezing almost identical to the symptoms that someone without
asthma may have a patient who has a neuroendocrine tumor in
the intestine might have intermittent vague abdominal
discomfort identical to the symptoms of someone with
irritable bowel syndrome might have, so these are some of the
challenges that make the tumor so difficult to diagnose
especially at an early stage. So
about nine years after I was diagnosed I became more
symptomatic and I had another reoccurrence of a G.I. bleed and
I started to develop some abdominal pain I would have
intermittent diarrhea I would have something called they
called flushing and flushing is when you become very hot and red
but it’s not like hot flashing hot flashing is when you’re wet
and you sweat and flushing is when you just become very hot
and very red and I was having those symptoms and I started on
medication. Some of those
treatments are medications that have very few side effects which
can help suppress the hormone secretion and make patients feel
a lot better there are additional medications that can
help slow down the growth of the tumor. I think the most
important messages is to always listen to your body and to
pursue any kind of investigation or medical care that you can to
get the answers if you’re not comfortable with yourself and
you really know that something is wrong you’re really feeling
uncomfortable you need to pursue it. With improved awareness
people will be able to identify the tumors earlier when they can
be cured with surgery or at least at a point when effective
treatments can be started at an earlier time. You need to really,
really listen to that inner voice. I do believe that we all
know when something is wrong, sometimes we choose to ignore
it, but I think that, when you’re uncomfortable enough
you need to pursue it. 20 years
ago, neuroendocrine tumors were in many ways were
a forgotten disease, there were very, very few effective
treatments that had been identified for patients
who have neuroendocrine tumors, we’ve seen a real shift just
in the past five or ten years there’s been a renewed
interest in neuroendocrine tumors and renewed success in
identifying successful treatments for these patients. I have good days and I have bad
days but most of the time I feel
pretty good I think this is just something that you live with and
you listen to your body and when I’m tired and I don’t feel good
I take those days and when I feel good I try to make the most
of life. I think the future is
very bright for neuroendocrine tumors and for patients with the
disease and those to be diagnosed as well we’re seeing
huge dances and treatment options and imaging and I think
there’s a lot to be hopeful for. You know you still get to live
your life and you still get to enjoy lots of other things and
just to appreciate that this is just the piece of luggage that
you were given to carry on your journey but everybody gets
luggage sometimes luggage is heavier sometimes it’s lighter
but it’s just part of our journey. (music.) And for more information
on diagnosing and treating neuroendocrine tumors
visit carsanoid dot org or our website, the balancing act dot
com. (music.)

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