Numerous IPMN

First of all I hope you are all well and this is my first post here ! More of a vent then anything so please accept my apologies.
 

I do appreciate that maybe I am largely jumping the gun here but as most others just looking for some one other than family to talk to bounce. And yes my doctor is the best person to answer those questions :) 

 

 

I am a 43 years old male that while running in June had some acid reflux. After back and forth with the gp , I was referred to an gastro doctor as we thought I had a mild GERD case.

 

11/09 : During an ultrasound they found a 3cm cyst around my pancreas (not inside) and nothing wrong with my stomach.

I was asked to do further tests , starting with a ct scan.

 

22/09 I had the ct scan which confirmed that the cyst was in the pancreas body and again it was full with fluid. I was told that I shouldn't be concerned. For better results I was asked to do an MRI and MRCP scan 
 

11/10 I got my MRI scans back and suddenly now I have 4 cysts and I was informed that I have IPMN and my case has been referred to the MDT board , so more waiting .

 

Due to COVID it is so hard to engage with the doctor , which has been super amazing overall but over the phone and email he informed that there is no sign of cancer but there is a minority of IPMN that do change over years to malignant.

 

The doctor has been excellent and he said I don’t need to worry but as you can appreciate over the past 5 weeks my brain has been playing crazy games. My wife is asking me to relax but unfortunately my life (and many others) are turned over !
 

While indeed most IPMN start benign it seems that the 10 years prognosis does not look very good with some studies say 97% chance that they will turn into malignant! If that is the case then it seems to me all IPMN are indeed malignant one way or another and not the minority.
 

I asked where the cysts are and the doc said that the main duct was not affected but won’t share exact location until after the MDT meeting! Again he said that no signs of cancer were found and the MDT meeting will decide if I will be released to 6 months frequency monitoring or have further tests such as EUS/FNA.

 

I have searched many forums and I can't find people that have had the same experience as myself.

 

 

Honestly it has gone from a basic acid reflux which I was joking around with my wife prior the ultrasound to anxiety and sadness with every new scan. I am indeed lucky as I was told no signs of cancer but I was also told that there was only 1 cyst to start with and now they are 4 with some been IPMNs. 
 

As well I have no clue if I still have one 3cm cyst within the group or the group of cysts make it up to 3cm , which might be a bit of better news.  Doc said that he is not sure that all of my cysts are IPMN and it is not common to have 4 IPMN cysts. Is there any chance that they are pseudo cysts after all and an EUS will give me some better good news? I know that the denial stage as IPMN and pseudo cysts are so different!
 

I never been a big drinker , 3-5 units of red wine per week max and overall healthy with a very small overweight problems. I have been running an average of 3 times per week and apart from the acid reflux that has now almost disappeared I have no other symptoms. 


What shall I be asking the doctor?


Do the majority of IPMN stay benign for ever or do they eventually turn malignant ? 
 

The waiting game is difficult but how shall I prepare my life for the changes? I havent touched any alchohol since the day of the ultrasound and my diet ,  no that is was bad , has further improved. I have lost weight but I still do run and with the diet I do expect the kilos to drop , but it seems that it is now slowing down. 
 

 

I was very scared of the MDT idea but thinking about it is an excellent initiative as it best to have numerous brains helping you. 
 

Apologies as there is no structure to this post and again was looking for somebody to bounce and talk to . There are people in this topic that might need more help than myself and I wish you are all safe and healthy

  • Hello Mariov

    Welcome to the forum although I'm sorry to hear about the situation that you find yourself in. I think that lots of our members here will be able to understand how difficult this period of uncertainty is. The unknown is often difficult and it can lead to lots of anxious thoughts and feelings. 

    I wonder if you might find it helpful to have a chat with one of our nurses ahead of your next appointment with the Consultant. They may be able to help you make sense of some of the questions and concerns that you have and identify what it is that you want to ask the team about your care plan going forwards. 
    If you'd like to speak to them they are available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I hope that you don't have to wait too long for the feedback from the MDT and that they are able to offer you some reassurance. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • Mayn't thanks for the support . I just had some more bitter sweets for the doctor that slowly slowly are demovitating me.

     

     The good news : it seems like a BD-cysts with no worrisome features yet. MDT is taking place on Monday so news will be imminent. As well doctor has no concerns and I did ask him 2 times . 

     

    the bad news : it's a 4cm cysts and the doctor refused to give me a 10 years prognosis ! Nothing positive or negative . He did state that the size of a concern. 

    Mario

  • Hello again Mariov

    I do understand that you just want someone to tell you it will all be OK. I think that anyone who faces a diagnosis of cancer or a condition that may lead to cancer feels the same. It's not selfish to just want things to be OK. 

    Although often easier said than done, try to take each day as it comes, keep busy and not look too far ahead as this will only lead to you feeling more anxious. 

    Hopefully the MDT on Monday will bring some good news and reassurance. 
    Best wishes, 
    Jenn
    Cancer Chat moderator