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Been diagnosed with a small IPMN pancreatic cyst and don't know what to expect

Posted , 4 users are following.

rosa06975
rosa06975

HI, I had an pancreatic endoscopy today and been told that I have a very small IPMN cyst in the head of the pancreas. In the note they advise monitoring. I have an appointment with the specialist on the 15th March but at the moment I don't know what to expect.

?Anyone that is or has been in the same situation and can give some advise?

0 likes, 10 replies

10 Replies

  • J4cqui16
    J4cqui16 rosa06975

    Edited

    Hi,

    i also had had a pancreatic cyst on the tail of my pancreas.  It was very large, the size of an orange.  I had surgery last May.  They drained it by attaching my small intestine to it so that it drained through my stomach.  the surgery was 6 hours and wasn’t very nice but it did work.  I have chronic pancreatitis now, after having severe acute necrotising pancreatitis 5 years ago, due to gallstones.   I had that cyst for 4-5 years although it didn’t bother me when it was small.  I think that monitoring your cyst is the way they will go and I wouldn’t advise surgery until you have to.  

    Wishing you you all the best.

     

    • rosa06975
      rosa06975 J4cqui16

      Posted

      Thank you Jacqui. Was the pancreatitis the result of the surgery?
    • J4cqui16
      J4cqui16 rosa06975

      Edited

      Hi Rosa. No, the chronic pancreatitis is as a result from the necrotic pancreatitis.  I don’t have all of my pancreas now as the necrotic fluid eats into the pancreas and can also affect other organs, which is why it has a high mortality rate.  I have to take Creon, an enzyme supplement now as my pancreas no longer makes them itself.  Bloody horrible disease huh?! 

       

    • rosa06975
      rosa06975 J4cqui16

      Posted

      Hi Jacqui

      sorry to hear about your issues with pancreatitis, is it indeed a horrible disease and something that I never heard before I was told I have a cyst. I also understand that once you have pancreatitis is no going back to normal as the pancreas never recovers. I am dreading to see the gastro next month and at the same time I just want to know exactly what the problem is and if the cyst has already affected my pancreas.

      I am trying my best to have a pancreas-friendly diet but having a diagnosis and some advise from the gastro will be very helpful.

      Hope you can work things out with creon and reach to me anytime you want to have a chat smile

    • J4cqui16
      J4cqui16 rosa06975

      Posted

      Thanks Rosa.  I think diet is key.  Get some good advise from a specialist dietitian.  I have a small cyst on my liver which they are keeping an eye on. I’ve had other cysts too which have resulted in surgery but these are due to the neurotic fluid so don’t be too alarmed!   Good luck and please let me know how you get on.

      best wishes,

      Jacqui x

  • deborah_8675309
    deborah_8675309 rosa06975

    Posted

    Hi Rosa, I was diagnosed with 2 side branch IPMNs about 2 years ago. The specialist told me I could have them monitored with yearly MRCP or have endoscopic biopsy which is what she recommended that I do. I decided to just have the MRCPs and hope that was a good decision as I am afraid of the biopsy. I would be interested as to what your doctor recommends when you return back in March as well. Good luck and try not to worry,  but I know how you feel and how hard that is to do. 
    • rosa06975
      rosa06975 deborah_8675309

      Posted

      Hi Deborah

      Thank you for replying. In the paperwork I have been given says no main duct dilatation and no mural nodules. May need surveillance.

      In the two years since you have been diagnosed did they tell you to follow any specific diet? Are you happy with the information you have been given?

      I will certainly let you know what the specialist recommends when I see him next month.

    • deborah_8675309
      deborah_8675309 rosa06975

      Posted

      I have never been diagnosed. I awoke one night with pain on my right side and the next day when I was getting up from my couch I felt severe pain on my right side like something tore, so I went to my GP who ordered an ultrasound, then CT then MRI and that’s how they found the cysts they have never done any blood work or other tests on me to determine if I had or have pancreatitis. I have been worried about the IPMNs because I think they can be or turn into cancer. I’m not opposed to having the endoscopic ultrasound but it’s the biopsy part that scares me, it’s not easy to know the right thing to do. 
    • rosa06975
      rosa06975 deborah_8675309

      Posted

      Hi Deborah,

      The endoscopy will give the specialist a much better idea of the state of the cyst and your pancreas in general. When I had mine in this week the doctor told me that if they thought it was necessary they will do a biopsy. In my case they didn't think it was necessary.

      I am also quite reluctant to have the biopsy as I understand that you can get an infection but the doctor ensured me that this only happens in the 1 - 2% of the cases.

      I don't know what kind of sedation they gave me this time but I don't remember anything and at least it will give the specialist enough information to give me a proper diagnosis and, I hope, tell me what to do and what to expect from now on.

      Also, I do believe that you can ask the doctor not to do a biopsy if that is your preference.

    • deborah_8675309
      deborah_8675309 rosa06975

      Posted

      Thank you, Rosa. I will talk to the specialist about the ultrasound only and no biopsy , they never discussed that option with me. I hope everything goes well with your next appointment. 
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