Possibly an intraductal papillary mucinous neoplasm (IPMN)

Hello @craigjulian - It can be a little unnerving trying to figure out what test results mean. Hopefully you can talk with your doctor soon. Here's some information on the topic:
-- Intraductal Papillary Mucinous Neoplasm (IPMN): What It Is
https://my.clevelandclinic.org/health/diseases/23176-intraductal-papillary-mucinous-neoplasm-ipmn
Do you have an appointment scheduled to talk with your doctor or care team?

Thanks for the information. I made an appointment with a gastroenterologist next Friday. Hopefully he can tell me what I should do. I started to believe all my GI issues- dyspepsia, nausea, bloating, and belching is anxiety and mental health because all my testing including past CT scans were normal- outside of hepatic steatosis for 15 years.
Thanks again for responding to my post.

I am a 74 year old woman who has a recent MCN/IPMN diagnosis with highly atypical cells. Not cancer.
My oncological surgeon has advised Distal pancreatectomy with splenectomy. I have no gallbladder and have existing digestive issues.
I’d love to hear from anyone who has had this surgery and how your initial recovery went and any long term effects post-operatively of living with a partial pancreas and no spleen.

I would think that a second opinion from a major neuroendocrine multidisciplinary medical center is never wrong. I also had a distal pancreatectomy with splenectomy in Feb 2017. I had a small cancer on the tail and have just had a recurrence. I think at 81 that is wonderful, I have appreciated the nine years. I have been on Creon to help with pancreatic enzyme insufficiency. For now I am on a monthly Lanreotide injection. Good Luck.

Thank you for your comment and best of luck to you also.

Hi @poppett - You may notice that I moved your post and combined it with this existing discussion on IPMN, because I thought it might be beneficial for you to be introduced to members who have discussed the same:

- Possibly an intraductal papillary mucinous neoplasm (IPMN) https://connect.mayoclinic.org/discussion/ipmn

If you are replying by email, click on VIEW & REPLY so that you can read through some of the earlier messages and meet some of the other members talking about their or their or their loved ones' experiences.

Fellow members such as @johnbishop @craigjulian @hopeful33250 may have some input for you on your recent MCN/IPMN diagnosis with highly atypical cells (not cancer). They also may have thoughts about the recommended distal pancreatectomy with splenectomy, including recovery from this surgery and any long-term effects.

poppett - do you have any particular concerns at this point about the diagnosis or about the proposed surgery?

Hello @poppett,

I can understand you wanting to connect with others who have this diagnosis. It can be frightening to have something wrong with the pancreas. I have had an IPMN diagnosis for many years now; however, there has never been any reference to "highly atypical cells."

Before consenting to this surgical procedure, I assume you are getting a second opinion. A second opinion is always wise prior to major surgery such as this. I would suggest that this second opinion be at a Pancreas Center of Excellence. Mayo Clinic could be considered. Here is a link to appointment information for the three Mayo Clinic locations (http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, I would recommend contacting the Pancreas Foundation for a second opinion recommendation: https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/

You mention having existing digestive issues. Could you describe these issues?

@hopeful33250
Thank you for your response.
I had a cholecystectomy years ago and have had some digestive problems since. Losing part of the pancreas will only worsen this.
I frequently have an irritable bowel alternating between constipation and diarrhea.
Doctors have told me I have Irritable bowel syndrome.
Needless to say I am very concerned about my quality of life after such an invasive surgery. Also losing my spleen as well will make me immunocompromised.
I live in Canada so an appointment with the Mayo Clinic would not be covered by our Health Insurance.
I will contact the pancreas foundation. Thank you for these suggestions.

@johnbishop
Thank you for your reply.
I have no symptoms at all but the pathology shows pre-malignant highly atypical cells and I was referred to an oncological hepatobiliary surgeon who has recommended a distal pancreatectomy with splenectomy. No cancer cells were found. I am talking to my surgeon in a couple of weeks to inquire about spleen preserving surgery. I’m aware that removal of the spleen is considered oncologically safe.
I’m not enthusiastic about going blindly forward.

@lisalucier
Thank you for your reply.
I have a great number of concerns regarding the aftermath of having the surgery. I’m already dealing with having no gallbladder and am concerned about diabetes, digestive issues and malabsorption.
Without a spleen I will be immunocompromised.
I am fairly well and active at 74. I’m worried about my general health after the surgery.