MRI MRCP - Cyst (IPMN) - Newbie

I apologize for not looking at who you are or what you have been through earlier. I just responded without thinking. I’m sure you have much more information on this than I could possibly have.

Refer to Figure 2 in the 2017 Fukuoka Guidelines link. It is a flow chart that summarizes recommended surveillance frequencies and intervention by size and characteristics.

I had a 2cm MD-IPMN from scan in 2021. Scan in 2022 showed cyst was 2.1 cm, but duct was showing signs of dilatation. So, I had distal pancreatectomy done this year. Pathology labeled me as stage 1b.

Hi, I have a 1.4 cm BD-IPMN and both my main pancreatic duct (6mm) and my common bile duct (15mm) are dilated. I recently was diagnosed with EPI. My doctor hasn’t suggested doing anything other than another EUS but I’m pretty concerned about it based on everything I have read.

How many months ago did you have your surgery? How are you feeling now? I read only a little bit about different procedures based on where the IPMNs are located. They removed part of your pancreas and your spleen?

I had my distal pancreatectomy on July 29, 2022. The tail end of the pancreas was removed along with the spleen. I was in the hospital for five days. I fully recovered from the surgery with no major complications. When the IPMN was noticed in 2021, I had an EUS performed that revealed benign, no alarming results. So, surgeon decided to scan again in a year, at which time the increase in dilatation was very noticeable. Pathology report after surgery suspected the IPMN might have been involved in the adenocarcinoma found. But, I was lucky that margins were clean, no spread. They removed 16 lymph nodes, all clean. With my stage 1 b diagnosis, I am undergoing chemo. I'm halfway through treatment, and it's not pleasant, but slogging through. I hope this information is helpful to you.

@frances007

I was wondering how you are doing. Do you have any answers or treatment plan?

Thank you for your question. Nothing has changed. A referral was sent multiple times to UC Davis for me to see a liver specialist there after I insisted on being sent there for further treatment. As luck would have it, two months have passed and UC Davis keeps telling me that they do not have the referral from Sutter Medical Foundation. In the meantime my doctor is running a variety of lab tests after I had a conversation with my former rheumatologist who I had remained friends with after her retirement, and who was sure that many of my issues were autoimmune in nature. Some tests have been returned which show a diagnosis of hypogammaglobulinmia. I see my doctor today and will find out more about this. I think he is waiting on one more test to finalize this diagnosis. In any event, I am pretty much in the same situation, and quite frankly, starting to lose interest in any future care for my medical problem. Not giving up, but perhaps giving in because getting any kind of solid diagnosis, or being seen by a liver specialist has become frustrating to say the least. I continue to have the most positive attitude that I can, and am remaining as active as I can as opposed to curling up in a ball and laying around all day. That's just not in my make up.

I appreciate your update, @frances007! I am sorry to hear that there is confusion about your doctor's referral being received by UC Davis. That must be very frustrating.

I am glad to hear that you are pursuing other avenues for autoimmune disorders. How wonderful that your rheumatologist is keeping in touch with you and offering suggestions.

I so admire your attitude. Will you post again when you have more information from your test results? I'm also wondering what kind of symptoms are you experiencing now? Any changes?

Thank you for your kindness.
My friend, a former rheumatologist, has made some suggestions to me in terms of what labs she would like to see. One of the labs she wants ordered is B6, which I have asked for. She also wants me to review my labs going back 2 years, specifically looking at bilirubin levels and providing this information to her. She said she keeps her license current, volunteers for Sacramento County and cannot take any payment for her help. I will think of some way to repay her for her kindness, perhaps a painting.
My symptoms consist of terrible itching, chronic diarrhea, no appetite and pain in my upper abdomen. I will be having a CT scan in 2 weeks for the pain I have had for quite some time in my left upper abdomen, toward the center. Probably epigastric issues. I am going to call Pacific Medical Center in San Francisco to confirm whether or not the hepatologists at Sutter who rotate to Sacramento only see those who need liver transplants, as my friend did not think that was true. She explained that all of the specialists rotate to Sacramento, so one may not see the same doctor each time. If in fact, a Sutter hepatologist could treat me, that might be of benefit. Especially considering what I was told this past week by my doctor. All hospitals are having problems and are far behind in seeing patients in specialty departments. I suppose I have waited this long, what would another few months be worth? My weight seems to be holding around 94 lbs, so I am not losing weight. I continue to walk and lift small weights each day so I do not lose muscle mass.
I have a new therapist and she seems to be more "real" than the former one who did not want to work with me. I have found during my navigation of my disease that I am feeling more empowered, a feeling that was always so foreign to me. I have let many of my "friends" go, especially those who could not or would not have anything to do with me once I became "chronically ill." There were some people in my life who lacked the same value system that I have, such as humanity, kindness and compassion to all, and after much thought I realized I had to let go of these people if I wanted to live a more satisfying life. I understand some people just can't handle having a friend who may not be 100 percent; however, the odd thing is that my personality has not changed, I am not asking anyone for help or things like that. Perhaps these people were afraid I would ask for help. This is not to say that sometimes I do need help with something, but usually it's something easy like helping move my furniture or something mundane. In many ways I feel stronger even though my physical being may be weakened. I wonder if this is a common issue with others who suffer from a chronic illness.

Hello again, @frances007,

I'm always delighted to read your posts and hear how you are proactively tackling this problem. You've acquired some great helping relationships and they are definitely providing you with some direction. We all need those types of friendships!

I read that you are asking for a B6 lab, which was recommended by the rheumatologist. I'm guessing that there must be some question about absorption of vitamins? Do you know if this is the reason?

Yes, sometimes our friendships do change as our life situation does. Chronic illness can take a toll on the relationships that exist in our life. I have a feeling that you will find others to relate to and who can also support you during this time (and those whom you can support as well). Your new therapist seems to be one of those individuals.
As you've mentioned that you are an artist, are you aware that on Connect there is a discussion group on Art and Healing? In this discussion group, members post about their experiences using art as a healing tool.

You might especially enjoy seeing some posts by @jenniferhunter. Here is a link to two of her posts, https://connect.mayoclinic.org/comment/704654/ and
https://connect.mayoclinic.org/comment/608270/
There is also a post by @harriethodgson1 with her doodle art, https://connect.mayoclinic.org/comment/692015/
I would personally love to see a photo of one of your watercolors!

I look forward to hearing from you again. Will you continue to post about your search for an answer and any helpful results from the tests?