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Pancreatic Cancer Diagnosis
Hello,
I have been experiencing some symptoms over the last few months and wasn't sure where else to ask, so thought I would try this forum.
Here is a quick history:
I am a 44 year old male. For over 20 months I have been experiencing upper left abdominal pain that often radiates to the back, minimal weigh loss over the last 6 months (2%). It is more of a dull pain, but can get more painful at times. So far I have had 4 abdominal and pelvic CT scans, none pancreatic protocol (all clear outside of recently a mild fatty liver and enlarged prostate), colonoscopy (clear), upper endoscopy (mild antrum gastritis), HIDA scan (20% EF), bladder and kidneys have been checked via camera inserted tube, multiple blood tests which have come back clear. Doctors at this point believe the results are related to functional abdominal pain and have not recommended any other testing. During this time I have met with 3 GI doctors, 3 ER visits, and 2 primary care doctors.
From what I can gather from previous discussions in this group pancreatic cancer often spreads quickly, so if I had it the CT scans most likely would up something with symptoms lasting for this amount of time. Most likely having some health anxiety as well during this time, as haven't received clear answers, but thought I would reach out to the group to see if anyone has experienced anything similar or has further recommendations. I have asked for an MRI, but all the doctors have said that they would only do that if there was something concerning on the CT scans or blood work.
Thank you so much!
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HugInterested in more discussions like this? Go to the Pancreatic Cancer Support Group.
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Hello @whitesox1977, Welcome to Connect. There is another discussion on the same topic that you might want to view here:
--- Pancreatic Cancer or Something else?: https://connect.mayoclinic.org/discussion/pancreatic-cancer-or-something-else/
@hopeful33250 posted a video in the linked discussion here that might be helpfull - https://connect.mayoclinic.org/comment/277619/.
Have you thought about seeking help or a second opinion at a teaching hospital or major health facility?
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4 ReactionsThanks John, very interesting discussion and sounds like some similarities to what I have been experiencing. One of the GI doctors I met with is associated with a teaching hospital. I was thinking something similar that it would be worth getting another opinion. His thoughts were that it was also functional abdominal pain that is made worse by health anxiety. The multiple CT scans and doctor's not overly concerned makes me feel better, but at the same time with online research (which I shouldn't do too much of) understand things can be missed on CT scans, especially PC.
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2 ReactionsI am also facing same problem
In your shoes and knowing what I know now, I would advocate for a PET scan. It will show any areas of high metabolic activity (which COULD indicate cells dividing and cancer forming). At the same time, I would ask for one of 2 blood tests-CA19-9 or CEA.
Lastly-get to an NCI hospital. There should be one within driving distance. If not, let us know where you are located perhaps someone on here can recommend a great team . Don’t make yourself crazy, but DO be your own advocate-and don’t stop enjoying life while you are doing it! Things caught earlier are always easier to deal with and if nothing is on a scan you are already blessed!
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3 ReactionsGet an MRCP as soon as possible! Pay for it yourself if you have to. It is an MRI of your upper GI tract including your pancreas. Keep calling Drs until you get one to do it.
Good luck.
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1 ReactionSorry you been through a lot.I am aware what your going through.I can only suggest if you have a Primary Doctor,like or dislike be persistent and let them know your in charge.Wish you all the best.
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1 ReactionHere are links to all NCI Centers of Excellence in Cancer treatment by State. Many of them have either a Hepatobiliary gram or a pancreas center. The second link are those NCI centers that make up the Precision Promise Consortium of the Pancreatic Cancer Action Network (PanCan.org) using a novel method in conducting clinical trials for greater benefit to participants and to obtaining answers more efficiently.
NCI DESIGNATED CANCER CENTERS
https://www.cancer.gov/research/infrastructure/cancer-centers/find
PanCan.org Precision Promise Consortium
https://pancan.org/research/precision-promise/locations/
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