MRI MRCP - Cyst (IPMN) - Newbie

My experience with MRI has been that it's more accurate than ultrasound. My IPMN-MD was resected last July, after a year of surveillance, because, although the IPMN had only grown from 2 cm to 2.1 cm, the duct was dilated more than had previously been observed. Evidence of cancer was found in the resected pancreas tail. I am stage 1b, undergoing chemo now. Doctors speculated that the IPMN may have played a role in the development of cancer. Hope this is somewhat helpful.

Hi, I read your story with interest. I had an MRCP in August that shows both liver and pancreatic ducts enlarged, like yours. Also found two small cysts, one in the head and one in the tail. It was ordered at UCLA by their head of hepatology dept. (not sure we can name names here). He told me the cysts were like "pimples" and nothing to worry about. However, I'm still very concerned because it results in something called the double duct sign which is scary when you read about it. I'm in Orange County. Last weekend the LA times featured an article about a comedian who beat pancreatic cancer and she brought up a program at UCSF. I looked up the study and it's a registry for people with pancreatic cysts. I contacted one of the directors there and heard from her right away. Now I wonder if you and I are talking to the same person. My contact is Dr. Kim Kirkwood at UCSF. She said I can get the appropriate imaging down here and she can see patients throughout CA. She also offered me a second opinion session with her which I'm setting up today. These IPMN's at less than 1 cm are put on a watch protocol just like you brought up. She commented that the dilated MPD may call for more testing. My report had the suggested follow-up protocols in these cases, which is an MRI pancreas. My hepatologist never even brought that up. Funny, I have had abnormal liver enzymes since 2013 when I had my gall bladder removed. About 4 years ago I had a liver biopsy at UCLA which wasn't conclusive. They thought it was either drug induced or primary sclerosing cholangitis. Now they want to repeat it. Have you been told anything about your liver directly? I'm having problems separating the two in my mind. Lately, I've been having stomach problems that are worse after eating. So of course I didn't really want to eat and since last Fall I have lost 7 lbs and I'm tiny to begin with. That loss puts me in a lower size jeans than normal. Honestly, if I could get into Mayo I'd likely go for it. I've been in the Arizona facility before. When you have complicated issues (and I have more than the biliary tree issues, such as a poly radiculopathy/neuropathy of unknown cause), they do a fantastic job of referring you immediately to specialists that you can see almost like the next day. It's very intense and highly condensed. If your insurance covers it, I'd advise it. Let me know your thoughts, especially if you're going to see Dr. Kirkwoood (via zoom).

Welcome, @rjtx. Getting imaging results before being able to review them with a specialist can be frightening. You'll notice that I moved your post to this existing discussion in the Pancreatic Cancer group here:
- MRI MRCP - Cyst (IPMN) - Newbie https://connect.mayoclinic.org/discussion/mri-mrcp-cyst-newbie/

I did this so you can read previous posts and connect with other members like @susanpmadigan @lvtexas @chasenkw @stageivsurvivor @frances007 @ileneb @sb4ca who have also received news that they have a intraductal papillary mucinous neoplasm (IPMN). As you know an IPMN is a benign pancreatic cyst in the ducts of your pancreas that can become malignant, or cancerous.

In this discussion @victoriadukes explains that she will be having surgery to remove her cyst:
- IPMN 2 cm mass head of pancreas caught EARLY....... https://connect.mayoclinic.org/discussion/ipmn-2-cm-mass-head-of-pancreas-caught-early/

You may also be interested in @mariouk journey with IPMN in this discussion:
- Benign or Malignant IPMN? What to do next? https://connect.mayoclinic.org/discussion/six-non-invasive-ipmns/

What questions are you preparing for your upcoming meeting with the radiologist? Can we help you prepare the list of questions?

Hi,
my wife has been having dull pain on her right abdomen for a while.
she took MRI/MCP. here is one note from radiologist
"There are a few punctate scattered cystic pancreatic lesions measuring 2 mm. These are probably pseudocysis or intraducial papillary mucinous neopiasm. Recommend one-year follow-up MIR/MRCP per ACR criteria". should we be concerned? I heard IPMN can develop into cancer. we are having a follow-up meeting with the radiologist. any pointers would be appreciated.

I will begin my research this week by checking online for a liver specialist at UC Davis. My niece did the same thing for her dad who is 72 years young and has severe dementia, and she wanted to find the best neurologist at UC Davis, which she was able to do as my sister is having an especially difficult time with her husband's downward spiral. I choose not to discuss my health issues with her because I know she is dealing with enough as it is. I will let you know of my progress. Thank you again for your kindness and support.

I will do so. I plan to contact one of my doctors who retired several years ago, but gave me her address and phone number. I need some help trying to locate just the right liver specialist to properly diagnose and treat my condition. My post about the Mayo Clinic and their help was done with great sincerity, and without the ongoing support I never would have even given thought to ask for treatment elsewhere.

@frances007 I've been following this discussion and especially your detailed posts. While I did not personally provide any advice or support I do appreciate that you took the time to thank those of us on Mayo Clinic Connect. Yes, this is what we do best. We listen, we support, we connect with each other and we give advice when it seems warranted. I also find it hard sometimes to advocate for myself but if I don't do that then who will? Not easy at all but just look at the what you've achieved by doing just that.

Please come back and let me know how you progress with your new health care team.

Since we're not doctors we are limited in what we say. I have read that cysts over 3 cm and having dilation of the main duct could be considered abnormal. The next test can involve blood, another MRI, or even using ultrasound to take a biopsy. Another option they might offer is to sit and wait while keeping a close eye on things. When do you see your doctor?

I contacted my healthcare provider last week after suffering a severe blow to my head when I fell down, In fact, I fell again last night. Without giving too much information, I was weak because I had to clean my toilet more than 15 times because after every meal, I have diarrhea, despite using lomotil before eating. However, while I was at the ER and telling the doctor about my experience and what I had found on the California Medical Board about my gastroenterologist who has been treating me for dilated liver and pancreatic ducts, she agreed with me that I should never see this doctor again. I am sure she knows more about him than what consumers can see on the "board's" website. Her reaction was very telling at best and her sage advice did not go without careful consideration about what I had been planning to do about my lack of care, lack of respect and an overall feeling of being dismissed by my doctor.
After that discussion I arranged a followup visit with my PCP and advised him that I am filing a grievance against my healthcare system because of the mistreatment I have been receiving from my stomach doctor as well as against a neurologist who misdiagnosed me 10 years ago with dementia without doing any form of testing(that resulted in losing not just my license but also my sense dignity and independence because I had to give up my new car. The diagnosis was later corrected by another neurologist who was stricken by the diagnosis and sent the appropriate information to DMV, but since I had already given up my car and could no longer afford to but a new one, I never renewed my license but will do so now), and that I wanted to be seen at University California Davis by a liver specialist. While I could have chosen Stanford, which has one of the best liver disease care centers in California, Davis made more sense because their hospital is located in the city where I live. I have Mayo Clinic Connect to thank for providing me with information about getting to a university hospital, and also for helping me develop enough confidence to get to the point where I felt comfortable asking for what I need.
After that video visit, I received a call from the Home Health department of my healthcare system and was advised that the following would be sent to my home beginning next week: RN, PT, OT, Dietitian, Nutritionist and social worker, I will also be getting a pressure relief mattress because the interstim device implanted in my back is protruding more than it was before because I have now lost almost 30 pounds since March. I cannot sleep on my back without waking up with pain that requires an ice pack each morning. My normal weight is 120, and I now weigh 92 pounds. No healthcare provider has ever discussed with me this weight loss, other than the stomach doctor telling me to eat all the ice cream I can, which I now cannot because I have become lactose intolerant and non dairy ice cream is too expensive right now.

I am grateful for the support I have received from the Mayo Clinic Connect for many reasons, including, but not limited, to the emotional support, the medical information and the encouragement to seek better care elsewhere. The sense of humanity provided by the Mayo Clinic staff has been tremendous and my experience participating in the Mayo Clinic Connect has been life changing. I have nothing but an enormous sense of gratitude for all those who have emboldened me to begin speaking up and becoming an advocate for myself, something that until now has always been difficult to do. Old habits die hard.

I thank all of you for taking an interest in my health and wish in some way I could better thank you by simply posting this message. You have changed my life and now I know I will get through this horrible affliction and begin a new path back to my healthy lifestyle. You hung in with me when my own medical providers would not.

My insurance company has called the hepatologist to schedule me an appointment, but they first have to triage me prior to setting up an appointment, I will follow up with their office soon if I do not hear back from them. In the meantime, my doctor tells me that I have a sphincter of odi dysfunction between the bile duct and small bowel. It is not functioning as it should, is inflamed, under high pressure and this is the cause of my pain and dilated common bile duct. Furthermore, he tells me my liver is fine, yet I have all these symptoms that lead me to believe that I have cholangitis. Chronic nausea, ongoing diarrhea and little to no appetite. I have now lost 30 pounds since March. I now weigh 92 pounds and my friend tells me my appearance is shocking, hence the reactions I am getting from many I know in the community where I live. My doctor said he could cut the SOD (valve) to see if that helps, but the risks of the procedure carry many risks. I am anemic and feel weak, yet continue to maintain a level of activity that I normally do because I don't want to fall into that trap of sitting around doing nothing. I will get updated labs this week to find out if I need another blood transfusion for the anemia. While my blood counts are low, I guess they are not low enough to warrant an iron supplement, which is problematic because the slow release iron I take causes severe diarrhea.
I feel confused and lost trying to navigate this alone. I chose one liver specialist who is located in San Francisco, but also maintains an office in Sacramento where I live. The doctor tells me that this doctor may not be the right one for me, but cannot lead me to any other doctors who would be more of a benefit to me. I chose this particular doctor because she is involved in many studies associated with PBC and other autoimmune diseases of the liver. I am a complete loss as to how much the medical system has changed, especially at Sutter Hospital who I have been with for 30 years. If the doctor I chose is the wrong one, I have been advised that if there is a better doctor at UC Davis, my insurance might cover my treatment there, but that might be a difficult task with all the issues related to HMO's and things of that nature, I get more support from the Mayo Clinic than I do from those doctors I have known for years. I thank all of you for your understanding and kindness towards me. I just wish I had a more positive outlook about my condition, because my body is telling me something is quite wrong.