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Has anyone had a duodenal diverticulum or cyst on the pancreas? I had something show up on a scan months back, and they are now repeating the scan to check for changes. They said it was hard to tell if it was a cyst mimicking itself as this as it was so small.
I can't find much information, other than that it seems inconsistent as people have different developments. At the time of the last scan, the Gastgro surgeon said not to read much into it, nor the recommendation for a follow-up scan in a few months; it could mean anything or nothing.
I am on Creon for EPI, and not surprisingly, one always worries about some sort of cancer stemming from this. This will be the 5th MRI or CT scan since starting Creon in 2022.
Replies to "Has anyone had a duodenal diverticulum or cyst on the pancreas? I had something show up..."
Hi, @creondave - just wanted to let you know I moved your post here so that you could connect with others who've been talking about pancreatic cysts who can tell you what happened after their cysts were found, such as @hopeful33250 @elizmckee @mizbbd @cjmchicago @vector @caughey.
Hello @creondave,
I'm glad that @lisalucier mentioned me in her post to you. My story is somewhat similar to yours. I have had surgery for three neuroendocrine tumors in the duodenal bulb. Several years after the second surgery, a CT scan (for something totally unrelated to the pancreas) revealed pancreatic cysts, known as IPMNs. I have had regular MRIs of the pancreas for over 15 years now. However, unlike your situation, they have not grown or changed in the number of cysts or size.
As @dbamos1945 suggested, it might be wise to seek a second opinion at this juncture. I would suggest a multi-disciplinary health care center, like Mayo Clinic. If you would like to seek help from Mayo Clinic, the contact information for Minnesota, Arizona, and Florida can be found here: http://mayocl.in/1mtmR63.
If for any reason, you cannot be seen at Mayo, I would recommend a university medical school in your area and seek a consultation with a pancreas specialist.
I would enjoy hearing from you again. Will you provide updates on what decisions you make?
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@creondave: Hi! I have had a history with cysts in liver, gallbladder, kidney, wrist & God knows where; so I am very reluctant when I hear of others following advise to “just wait & watch… probably nothing”.
I made this mistake for years with several specialists all to wait- but I waited too long. For your peace of mind ask for a 25hr urine lab test and seritonin blood work-up.
Finally (with constant diarrhea) led me to get Abd CT scan that revealed suspicious areas. I went to gastroenterologist that performed Endoscopy, took biopsies, and diagnosed Neuroendocrine Carcinoma Tumor Cancer! My primary tumor is in my small intestine with metastases to multiple liver tumors (previous area of cysts).
I “waited & watched” too long!
Anyway, I don’t mean to add fear to your concerns, I only want you to be aware that “cysts” can be benign and sometimes result in my diagnosis. I wish I had insisted in above tests years sooner - I could have caught it before it had spread.
Another reason I wanted to share is that Neuroendocrine Cancer is rare, but many of my peers have NET tumors in their pancreas’s tissue.
Be Well! Be Healthy! dbamos1945