MRI MRCP - Cyst (IPMN) - Newbie

Thank you for sharing. Great news that you are doing well.

I had an acinar cell tumor in the head of the pancreas and underwent a Whipple procedure. A week after the Whipple when a CT was done, metastatic spread to the liver was suspected.That was two weeks after the initial diagnosistic scan that detected the tumor. When the suspecious areas were large enough to biopsy as a result of the first adjuvant chemo (Gemzar) being ineffective, I was switched to aggressive Tera with Folfirinox. I had 24 cycles of The original formulation alternating with 5-FU+Leucovorin in groups of 6 cycles making a total of 46 cycles. That was followed by a clinical trial of targeted maintenance monotherapy using a PARP-1 inhibitor because of a BRCA gene mutation. The trial drug led to a complete response. I continue taking the PARP inhibitor and will be 8 years on it in October.

The IPMN in a branch duct of the tail was discovered in 2019 by a routine surveillance scan that is performed every six months. It was 0.8 cm when first detected and the last scan in April was 0.7 cm, likely from where the scan slice was made and not actual shrinkage.

You said you also have been diagnosed with pancreatic cancer 10 years ago. What treatment did you receive then? I have IPMNs in the head, one being 2.9 cm and have been diagnosed with a Small NET in the tail.

Thank you for your kindness and concern. I will update when I have had a chance to see the liver specialist who is part of the study for primary biliary cholangitis, primary pancreatic cholangitis. I have just sent off a note to my PCP for a referral to her.
Yes, the process is frustrating as you can imagine. It's difficult to get that feeling, "no one wants to talk to me." But, I see my urologist tomorrow for a post op visit, and she usually has a way to make me feel better about everything. I find that female doctors are more sensitive to patient concerns as opposed to my male doctors.

I can understand your feeling overwhelmed, @frances007. You have been through a lot here lately. That combined with the weight loss must make you feel frustrated by having to look for more medical treatment.

Will you post again if you need encouragement, suggestions or just to update me?

Thank you very much for your reply, it is encouraging.
Regarding the doctor telling me to get a second opinion threw me off as I have not heard of a doctor suggesting the same. Since I cannot get a second opinion from Sutter Hospital anywhere in Sacramento, Davis, Roseville, Auburn or other areas nearby, I will contact the doctor in San Francisco who is doing the study. I am simply exhausted from whatever is going on with me and also having to contact so many people just to get the right treatment. The MCRP was especially stressful as Medtronic had to ship me a new control device because the representative had locked the device when he programmed it after my recent surgery to remove and replace the device which enabled me to finally get the exam. It took a long time for the technicians to contact the representative and get the device programmed for the MCRP so that I could finally have the exam.
I thank you for your interest and comments. The medical system needs to go back to "slow medicine" per my OB/GYN, but she does not see this happening any time soon and that is a sad thing. I will keep you apprised.

Hello @frances007

I'm so glad that you posted an update. Your doctor suggesting a second opinion should be very encouraging to you. Your doctor obviously knows their limits of experience and knowledge. I would not think of this as bothersome but find it very encouraging.

If you are not living in an area where you can get a second opinion, then going to a university medical center or a facility like Mayo Clinic is certainly in your best interests. The fact that you found a doctor in San Francisco who is studying this condition must be heartening. Do you have an appointment scheduled with this doctor?

Yes I will post again after hearing from my doctor this week. I have also located a doctor in San Francisco who is doing a study on those with my condition, and I intend to contact her. What I find most bothersome is that my doctor suggested that I get a second opinion, however no Sutter doctor in my area will provide me with one. I have never heard of a doctor telling a patient to get a second opinion as I thought it was the other way around. In any event, once I hear from the doctor I will provide an update. Mostly I am concerned with my weight loss and overall lack of energy, along with protein deficiency and malnutrition that were revealed during recent labs.

Yesterday I had my MCRP. Sutter Hospital releases the results to the patient before the doctor has reviewed the same. I see that there are no obvious masses, but really do not understand the significance of the results. I also completed some lab work and have inquired about the ongoing platelet count. I thought I was well versed with regard to my condition; however, I have lost 25 lbs since March, continue to have chronic pain in my upper right quadrant as well as ongoing nausea and lack of appetite. I am not constipated, so unsure about that finding.
Thank you
Impression
IMPRESSION:
Mild intra and extrahepatic ductal dilatation is stable with no intraductal filling defects.
Mild dilatation of the main pancreatic duct 5 mm is stable as well with no intraductal lesions.
These ductal dilatation fibula to a stricture at the sphincter of Oddi, for example. No masses are identified.
Multiple tiny hepatic cysts are again seen.
No acute findings.
Moderate constipation suggested.

Narrative
PROCEDURE: MRI CHOLANGIOPANCREATOGRAM, 8/5/2022 2:16 PM
COMPARISON: April 2022 ultrasound abdomen, CT abdomen pelvis February 2021
TECHNIQUE: Multiplanar multiecho sequences performed without contrast using MRCP protocol.
CLINICAL INDICATION: Abdominal pain and abnormal US of the pancreatobiliary system.

FINDINGS:
No worrisome liver lesions are present with multiple tiny hepatic cysts identified. Mildly dilated common bile duct to 1.1 cm without intraductal filling defect and with normal distal tapering again seen. Mild dilatation of the central intrahepatic biliary ductal system is also stable. Main pancreatic duct is mildly dilated as well with maximum caliber of 5 mm. Normal gallbladder. Normal spleen. Normal adrenals. Normal kidneys. Moderate constipation suggested. No adenopathy. No free or focal fluid. Pelvis was not imaged.

Images
Scan
Component Results
There is no component information for this result.

Hello @chasenkw,

I trust that by now you have heard from your doctor and that you have some idea as to what sort of follow-up will be needed to track the IPMN. I have had this diagnosis for a number of years, with little change in the cysts. I have a follow-up MRI every other year at this point.

Will you post again with updates?