Pancreatic MCN cyst - head of pancreas
I was recently diagnosed with a MCN head of pancreas cyst (just under 4 cm) in April via EUS after ER visit for abdominal pain. It was infected. Mild enhancement of wall of septa no duct dilation. CEA 6470 ng/ml.
I have had increased symptoms of feeling full immediately and sick after eating, nausea off and on all day and adominal pain radiating to back. I went in with complaints and saw the nurse who said these symptoms are not from the cyst (tsked at me) and ordered a GI emptying test which I am waiting for before going to Jacksonville for a second opinion. Have been told to get a repeat MRI in a year.
I am curious if anyone has had this rare cyst (head of pancreas) with symptoms and their experience.
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I had history of unexplained Acute bouts of Pancreatitis. Last year (2024) I had a CT scan due to abdominal pain from Diverticulitis. What also showed up in the CT scan, was the presence of a cyst on the head of my pancreas. Shortly thereafter, I had an MRI with contrast which showed a dilated duct and septations in the cyst and what appeared a very small growth inside the cyst. These are considered worrisome features. Shortly after my MRI, I had a EUS which was not conclusive. Note that the biopsy is one point in the cyst. The MRI report stated to have a consultation with a surgical oncologist. I met with two surgical oncologist. One at Mayo in Rochester and one at Froedtert Hospital & MCW. Both agreed that a Whipple was needed. The probability of the cyst containing Adenocarcinoma type cells based on the worrisome findings was 50/50. Had the Whipple in June 2024 at Froedtert in Milwaukee. I can say that the surgery saved my life as my cyst did in fact have cells of the Adenocarcinoma type. Please do not wait, a year can make the difference between life and death as pancreatic cancer is one of the most aggressive and difficult to treat. Get a second opinion at a specialized high volume health center such as Mayo. Whishing you peace and health!
Thank you! I am glad you are doing well. I am scheduled to go to Mayo Jacksonville soon.
Excellent! Keep us posted on how you are doing.
My team is at Froedtert. I also have pancreatic cancer with the tumor at the head of the pancreas. May I ask which surgeon did your whipple procedure?
Dr. Douglas Evans was my surgeon for my Whipple at Froedtert & MCW. Excellent Dr. and surgical team!!!
Were you able to have your appointment with Mayo Jacksonville? If so, how did it go?
Yes! I am going back next week for another biopsy and they are going to send it for genetic testing which is something they did not do here locally. Fingers crossed!
Good for you. Seems like things are progressing. It is pretty cool to be able to genetically test the biopsied cells. Do have any idea how long it takes? I have not had that done, so I am just curious. Thanks.
No, I will ask next week and report back.
Thanks. I would really appreciate that.