Cyst on Pancreas?

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?

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.

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.

@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

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.

Hi @hopeful33250, what kind of cysts did you have? Were they IPMN's? I had a CT scan without contrast for GI issues 8 months ago and there was some adhesion near peritoneal muscle. Since then I had a total hysterectomy summer of '24 and the doctor scraped the adhesion in peritoneal muscle. The GI issues of loose stools/diarrhea is not going away (almost 3 years of this and the urge to go after eating or even drinking water). I also have mid back pain and lack of appetite(also going on 3 years) and fatigue. I had an MRI to see what else could be going on with the GI issues and as a follow up for the peritoneal muscle adhesion and now there is a 5mm BD-IPMN in pancreas possibly communicating with main duct. GI asks me to do a repeat MRI after 1 year but given my other symptoms, I'm worried. I'm 52 and my kids are young.

Hi @hopeful33250, what kind of cysts did you have? Were they IPMN's? I had a CT scan without contrast for GI issues 8 months ago and there was some adhesion near peritoneal muscle. Since then I had a total hysterectomy summer of '24 and the doctor scraped the adhesion in peritoneal muscle. The GI issues of loose stools/diarrhea is not going away (almost 3 years of this and the urge to go after eating or even drinking water). I also have mid back pain and lack of appetite(also going on 3 years) and fatigue. I had an MRI to see what else could be going on with the GI issues and as a follow up for the peritoneal muscle adhesion and now there is a 5mm BD-IPMN in pancreas possibly communicating with main duct. GI asks me to do a repeat MRI after 1 year but given my other symptoms, I'm worried. I'm 52 and my kids are young.

Hi @hopeful33250, what kind of cysts did you have? Were they IPMN's? I had a CT scan without contrast for GI issues 8 months ago and there was some adhesion near peritoneal muscle. Since then I had a total hysterectomy summer of '24 and the doctor scraped the adhesion in peritoneal muscle. The GI issues of loose stools/diarrhea is not going away (almost 3 years of this and the urge to go after eating or even drinking water). I also have mid back pain and lack of appetite(also going on 3 years) and fatigue. I had an MRI to see what else could be going on with the GI issues and as a follow up for the peritoneal muscle adhesion and now there is a 5mm BD-IPMN in pancreas possibly communicating with main duct. GI asks me to do a repeat MRI after 1 year but given my other symptoms, I'm worried. I'm 52 and my kids are young.

Hello @caroline24 and welcome to Mayo Connect. I've read your posts and certainly understand your concerns. Any problem with the pancreas always brings worries. I had cysts show up on my pancreas about 15 years ago. I also had a EUS (but no biopsy as it appeared to be benign). I've had follow-up MRIs on a regular basis since then with no changes in size or the number of cysts. They have basically remained the same.

Like you, I was quite worried at the start, but now accepting it as not a great of a threat to my health (or happiness). Perhaps you could ask your GI doctor to do pancreatic blood work. This would show if there are any problems with the functioning of the pancreas.

Here is another discussion on Connect that might help you to understand this better,
https://connect.mayoclinic.org/discussion/cyst-on-pancreas/
Cyst on Pancreas? | Mayo Clinic Connect

Please continue to post about your questions and concerns. Waiting for the EUS and the results can be stressful.