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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.
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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.
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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.
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And for more information on diagnosing and
treating neuroendocrine tumors visit carsanoid dot org or our
website, the balancing act dot com.
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