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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.
Replies to "Hi @hopeful33250, what kind of cysts did you have? Were they IPMN's? I had a CT..."
Hello @raindrop,
Yes, my cysts were diagnosed as IPMNs. They were originally found on a CT scan, for an unrelated matter. After that, I had an MRI, and later an ultrasound endoscopy. Since then I have had numerous MRIs to check for any changes. Over the years, there have been no changes in the number of cysts or the size.
If you are not comfortable with the current follow-up that has been suggested, I would encourage you to seek a second opinion. If you are near a Mayo facility, a second opinion would be helpful. Here is a link with information on obtaining a consultation, http://mayocl.in/1mtmR63.
If an appointment at Mayo is not possible for any reason, I would encourage you to go to a university medical school in your area.
I would enjoy hearing from you again. Will you post again with any questions or concerns?
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I don't know where you live, but the cyst should be tested for genetic cancer markers. You are appropriately worried about your symptoms, which suggest that indeed the cyst is blocking the duct so you are not getting all the enzymes you need. I just went through something similar, and all my docs are at Stanford health in palo alto Ca. They are awesome. Dr. Alice Lee is my GI, (650-723-4519) Dr. Walter Park did the endoscopy to get fluid from the cyst to test for nasty genes, and because I had 2 nasty genes, Dr. Visser did the pancreatic surgery to remove the cyst. Stanford is an NPF center of excellence, as is Mass General in Boston. I got a second opinion from Dr. Motaz Qadan there. 617-643-5153.
Google “NPF centers of excellence” to find a location near you. Got my fingers crossed for you.