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I started experiencing a sudden onset of panic attacks, night sweats and
severe insomnia in the summer of 2009. My family doctor ran a blood panel and
found elevated lipase.
I was immediately sent for an ultrasound, CT and MRI.
My local radiologists found a dilated duct and a 6mm mass. I was referred to
the 'best' in Toronto who repeated every test and said nope no mass. I told
them my father died of suspected pancreatic cancer and my surgeon said ' gee
thats a hard diagnosis to miss'.
They decided I had probable scar tissue fom idiopathic pancreatitis. I coud
eat anything and had no digestive issues at all. He sent me for an EUS, came
back insufficient cells. So they decided to follow me every three months with
scans. We asked if they left that dilated duct there would it turn into
anything sinister and he said no.
The radiology team in my home town freaked out when they heard this and even
called down to Toronto to direct the physicians to the exact slides where
they saw the tumor but nothing ever came of this.
14 months later I had a new nodule suspicious for Adeno. I had a distal in
A 2cm mass poorly differentiated with no spread, but IPMN cells at margin.
Surgeon wanted to take out the rest of my pancreas but his team disagreed.
One year later had a recurrence in my head of my pancreas . They told us it
was huge 4cm with lymph. They recommended surgery but this time I first
needed a stent for jaundice and then pre op rad/ chemo. Two weeks into this
regimen I became very ill with sepsis. In the hospital for three weeks of
antibiotics then a total pancreatectomy.
As it turned out they were wrong again. It was only 1 cm with no nodes which
seemed very positive. My first 3 month scan after this shows widespread mets
to liver and lungs.
I am hoping for a trial with something other than chemo.
I can't tell you how many times I was told whatever is going on with your
duct it's not cancer. I was told pancreatic cancer is a hard diagnosis to
miss, that I did not fit the profile.
Bottom line, I am 51 with two beautiful sons and a wonderful husband and I am
never going to see my sons get married or hold my grandchildren because of
the ignorance, arrogance and incompetence of my surgeon. I have been thru two
terrifying surgeries that I fought really hard to recover from.
And in the end it all came down to one docs decision to watch and wait.
Posted 06/22/2012 08:41 pm by KADY
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