MRI MRCP - Cyst (IPMN) - Newbie

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.

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?

A side branch IPMN commonly abbreviated BD-IPMN for branch duct tend to be the benign form of this cystic neoplasm. They rarely become malignant whereas the main duct IPMN (MD-IPMN) has a higher tendency to go from pre-malignant to a malignant form. There is a protocol that is used for surveillance of IPMN’s. Generally IPMN’s are surveilled and watched for growth that could lead to ductal dilation, changes in shape or content and size. BD-IPMN’s are monitored and if the diameter reaches 3 cm regardless if benign, surgical intervention is used to prevent severe bouts of acute pancreatitis and the prevention of chronic pancreatitis which could result further into pancreatic cancer. MD-IPMN’s and one’s located where it is communicating closely between a branch duct and the main duct are more likely to have surgical intervention when they reach 1 cm because of their likelihood to transform into malignancy.

The next step for you is to meet with a surgical oncologist that specializes in IPMN’s and pancreas surgery. A surveillance schedule/frequency will be determined where a pancreas protocol CT or MRI is used to do the monitoring. In the majority of patients, IPMN’s remain stable and never cause problems. I was diagnosed with a likely BD-IPMN in the tail several years ago and it has remained at just under 8mm and causes no symptoms. My surveillance is done by an MRI pancreas protocol every 6 months since I had been diagnosed with pancreatic cancer over 10 years ago. So I get routine surveillance scans every six months to detect signs of reoccurrence and the IPMN status has been incorporated into the scan.

There is a National clinical study recruiting patients with IPMN’s. There are numerous sites around the USA in nearly every State and you may be interested in participating in the study. The following link describes the scope of the study, eligibility criteria and locations-
https://ecog-acrin.org/clinical-trials/ea2185-pancreas-cancer-prevention/

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.

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.

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?

I saw my PCP last week and a referral to a liver specialist has been made. I am encouraged that I will finally see a doctor who specializes in my condition. Currently, I am having a very difficult time eating. I have no appetite, but understand this is a symptom of my disease. I have always been slender, but now look rather anatomical as I have lost so much weight. Lately I have noticed that those in my apartment complex who I would run into and talk to on my daily walks now avoid me, and feel hurt by their reaction to me. I have always been self conscious about my appearance, always ensuring I am well groomed, my clothes are pressed and things of that nature. Now I am more aware of the amount of weight I have lost and people's avoidance of me is bothersome. Perhaps the nutritionist I will be making an appointment with will provide me with what types of food will help me most. While I try to maintain a positive outlook about my disease, I now find myself feeling rather fatalistic because there appears to be no treatment for my health condition at this point in time.

@frances007

So sorry that you said, " I now find myself feeling rather fatalistic because there appears to be no treatment for my health condition at this point in time." Please know that the liver specialist as well as the registered dietician are experts at this type of problem and may be able to put you on the right track to a more healthy lifestyle and appearance. In the meantime, try not to be let down by others who you feel are avoiding you.

Are you in a situation where you can develop friendships outside of your apartment complex? Perhaps a church or other community center that has programs for senior citizens?

Thank you for your kind words.
I am very involved in my community, and in June of this year joined the Assistance League, a national organization that has resale shops around the country. They have many programs to support women and children. I volunteer for 4 hours each week and have met many nice people; however, many seem to notice and want to discuss with me the amount of weight I have lost. I am polite, attractive and always look put together, just giving you a sense of who I am. If I look better, I feel better. A neighbor recently invited me to attend church with her, which I did. It was a very nice experience, I met many wonderful people and will probably go back again, even though I am pretty much an agnostic. I need to follow up with the dietician. I also need to schedule a 3-D mammogram, but have held off because I am embarrassed about the way I look. I will take a friend with me. I have a good support system, and am learning to let go of those who are avoiding me. As you know, it is a process.