Pancreatic cyst - terrified

[Amodernhistory]

Hoping for any experiences. I had an MRCP MRI a few weeks ago looking for gall stone in common bile duct due to dilation of that duct. No results yet but today had a letter which starts ‘Hopefully you know you have been diagnosed with a IPMN cyst in pancreatic branch duct and were discussed at MDT’ and ends ‘we’d like to put you on surveillance programme for regular scans’. The letter says this is not pancreatic cancer but some cysts turn into cancer.

Well. I did not know, and there’s no one around to call over weekend for the (rest of the) MRI results. I still don’t know if my intermittent pain is gallstone, but there must be something else wrong too if my case went to MDT? Or is it possible all these cysts go to MDT to see who gets surveillance and who gets worse and who gets nothing? Half convinced more bad news on the way, but surely they wouldn’t suggest monitoring this new found cyst in 6 months/a year if the gallbladder problem/ common bile duct dilation was itself cancer?

any experiences at all would be helpful. Google (I know) suggests anything from an increasingly common incidental finding due to advanced imagery, to scary stats for developing pancreatic cancer. I’m veering between thinking well it’s good to know and wishing I didn’t know. Because I don’t know anything and so have decided to stop skimming studies I don’t understand. Help - has anyone got a pancreatic cyst?

No advice but wishing you well OP. Being monitored is surely a good thing as if it were to develop it would be caught early.

No need to be terrified. They just have you under surveillance as they have said. So if there are any changes, then they can act quickly. You can now improve your diet and do all the things necessary to change your lifestyle to help reduce the chances of any cyst turning into cancer. I am under the same regime, with scans every six months, and I am absolutely NOT terrified. In fact, I feel rather comfortable knowing that I am being monitored.

It's good that it will be monitored. No need to be terrified although I know that is easy to say. The fact they are just monitoring it and not going in is a plus!

They found I had an enormous (it was all I could see on the scan photo - pretty much across my chest) pancreatic cyst following an MRI to investigate for gallstones.

I had the MRI on the Thursday and got a hand delivered letter on the Sunday for an appointment the next day...I was very worried! I remember the scan person making the point of asking me if I had an appointment coming up lol 😂

I can't remember the exact order of things now but I think I had an endoscope down my throat when they took a biopsy (it was clear) followed by surgery where they ended up removing my gallbladder and at the same time connected the cyst to my stomach so it could drain away (all keyhole surgery thankfully).

Mine was way too big for monitoring.

These IPNM cysts are tiny and are fairly common incidental findings on scans ordered to investigate other issues. They don’t cause any symptoms and the usual plan is just for follow up scans and if the cyst doesn’t change it doesn’t need any treatment. It won’t be the cause of your pain. Advising on the management of these is pretty specialised so your scans will have been sent to your local specialist MDT for their opinion, that’s standard, and they have written to you directly. The doctor who requested the scan in the first place will need to get back to you about whether you have a gallstone.

This was me 14 (!) years ago. I was being investigated for gall stones and they saw something on my pancreas. There are LOADS of different types of cysts/tumours/lumps. Mine was a (wait for it) pseudo papillary neuro endocrine tumour. They thought it MIGHT be malignant so operated on me a distal pancreatectomy and splenectomy. Once it was out that was it! No chemo no radiation nothing. It will be 15 years on August 8th this year. I also had scans for a few years just in case! Good luck it honestly isn’t necessarily a very bad thing mine was lucky to be found at the time.

I love mumsnet. Thank you all so much - the responses cover a bit of what your best mate might say e.g ‘get a grip’, some authority on why this has happened in terms of sequencing/MDT query, and someone who has lived experience - and is alive.

This site is amazing, love how anytime of day or night there’s a handhold

Yes this is terrifying but please do not worry!

I have two small cysts of exactly this type that were picked up 4 years ago on a routine scan for something else.

As well as the original NHS scan that picked them up, and a follow up NHS MRCP, I saw a pancreas specialist privately who said he sees this a LOT nowadays as these cysts are so often picked up on scans and that -although this can have a devastating emotional effect on people - it is a really good thing - in most cases the cyst will not progress to cancer, but if it does (and it probably won’t), it will be caught early. Someone monitored in the way you will be will never be in the position of being told you have inoperable pancreatic cancer, because you will be monitored - and the likelihood is the cysts will never do anything at all anyway.

He also told me that even if they did start to grow, they would not cause pain. So any discomfort you are feeling is not a sinister sign related to the cyst.

I would suggest if you are worried you might see a specialist privately to discuss your fears, but the monitoring scans should be done consistently through the NHS. Depending on your area, you may need to push for this, and chase it through your gp.

Do not worry about this over the weekend! Reality is lots of people probably have these; they’re just not picked up.

(My original scan was for a hip fracture when the cat tripped me up & I fell downstairs. It has occurred to me that my bad cat may have saved my life - because these cysts were found & I am monitored now. Thank you 🐈! )

Ps if you have that NHS ‘my pancreas’ app I would delete it right now, and rely on specialist advice instead that is given by someone who has actually seen your scan! Honestly that app just caused me immense worry - because so much of what it describes is very frightening and very very sad, and not at all applicable to the position I have described.

My boss has one of these and has regular scans. This has been going on for about 15 years now! They also found his by accident as they were looking for something in his gallbladder/kidneys!