Hi following a ct scan for something else ( confirmed on MRI) I have been told I have a likely 3.8 cm side branch (? Main branch) IPMN. Â From the scans it does not have adverse features.
I have been told due to size I need an EUS With FNA.
I can find little information on people's experiences and the likelihood of this being cancerous all my doctors have given different stats!
I have asked for a referral to a specialist pancreatic centre - I have the choice of Dr Khan's team at the Royal Marsden or Professor Heaton's team at Kings College Hospital both in London.
I am not sure where to go does anyone have any experience of such a cyst or these centres.
im sorry you’re getting no replies. I suspect this is because nobody has any answers for you. I know nothing about this though did look it up. It appears the outlook is generally excellent for this condition. Why not try redirecting your message to one of the Macmillan nurses in the site. They are brilliant.
I also have multiple ipmn cysts on branch ducts, largest being 13mm, the consultant in St Vincent's hospital in Dublin says he will do an mri in one year and they are currently not worrisome. Maybe not fir him but they are for me. These cysts were detected when I had a Cat scan for something else. Not sure what to think Really, still processing the information.
I have 6 of those cysts largest is 4.2cm and the next largest is 1.2cm.. all the others are under 8mm . I have been referred to doc Khan and rumours have it that they would recommend a full pancreatic removal . Any updates will really help
Dear Mario I am so sorry to hear what you are going through. I know how terrifying it is and I can truly say it was the worst period of my life.
i would strongly recommend Professor Heaton at Kings College Hospital - but ensure your see him not a junior team member. He is so experienced and kind and you can usually get in for an appointment without too much of a delay - his secretary is very helpful and efficient- you tend to wait a while on the actual day as they are so busy as I think they let everyone come as they know how worried people are and can’t wait weeks.
i had something of a miracle - it was so unclear what was wrong I went down for surgery- they have laparoscopic experts there so it is less invasive- I was set for a partial removal of my pancreas and the whole spleen. When they looked it had disappeared- the whole team came to look as they could not believe it. So no surgery. I was monitored with scans for 2 further years and I had a couple of small ones which came and went. I have now been discharged ( last January) but I can return if I need to.
I wish you well and would strongly recommend Professor Heaton.
