Six non Invasive IPMNs

Posted by Mario @mariouk, Oct 21, 2020

Hey all and as per my name I am Mario.

I hope you "well" and safe..

Why somebody from the UK be at these forums? Help , inspiration , second opinion. Maybe I can offer you some help? As well I have heard about the amazing Mayo clinic reputation and if I have to I will travel to the US for help! Sorry its all very selfish I know :(. But the main reason is that I was told my case is very unique and the doctors are very confused and that is not providing me any confidence. I do appreciate this is a forum but maybe others have experienced similar cases in the US and a reputable hospital as Mayo! I am very lucky as my case has now been referred to Royal Marsden Hospital which is one of the best cancer only hospitals in the world.

Situation:

I am an active 43 years old male, very limited alcohol use (3-4 units of wine) and quit smoking over 20 years ago. According to my VO2 i have the heart of a 24 🙂

In June 15th while I was out running , I had a mild case of acid reflux that made me stop. Cut the long story short , after ultrasound, CT and MRCP scans I have been advised that I have 6 IPMNS . They believe that they are all non invasive and zero signs of nodules. I have no main duct dilation and my CA19-9 levels are normal. Apart from the acid reflux no other symptoms.

My case was escalated to an MDT and I was informed on Monday that my case has now been further escalated to the London Surgeon MDT !!!

Here are my findings

FINDINGS:

Multiparametric imaging including DWI and post IV contrast enhanced sequences
performed.
Comparison made with a recent CT of 22 September 2020.
The dominant cyst lies in a midline body of the pancreas and measures 42 x 32 mm. This is
smoothly outlined, unilocular and does not appear to contain any enhancing septi no nodules
within it. This is abutting the underlying main pancreatic duct.
There are at least 5 more well defined cystic pancreatic lesions which measure 14 mm, 8 mm in
the body and neck with a cluster of small and cysts in the distal body/tail which measure 5
mm, 5 mm and 3 mm respectively.None of the cysts appear to have any enhancing septi or
nodules within them.
The smaller ones previous communication of the side branches.
The main pancreatic duct is not dilated.
No evidence of biliary dilatation or obstruction seen.
10 mm simple liver cyst is seen, no other discrete liver lesion or biliary obstruction.
No upper abdominal lymphadenopathy or free fluid.
The gallbladder is thin-walled and distended and no obvious gallstones have been visualised.

I was told by my gastro that I most likely given the option of going ahead with a total pancreas removal just to eliminate the risk of one day turning in cancer.

Again I am sorry been selfish but I am so so confused and I have so many questions that I am not getting from my gastro as he is playing the middle man!

The main questions are of course are the following:

1. Survival rates of total pancreatectomy surgery (seems to be around 97% in the UK)
2. Why are the total pancreatectomy 5+ years prognosis so poor? Is it the diabetes that kills you or is it the cancer if it has progressed
3. Why jump the gun and cut the thing off when they had no EUS/FNA tests
4. Why not aggressive monitoring ?
5. I would love to meet ppl that had complete pancreatectomy what is life like?

I have not been able to sleep for 3 days now and I am barely eating. Every time I see my daughter I almost break down and cry and now so so unfairly I am avoiding her .. She is only 6 years old and she is looking for hugs from daddy all time. Maybe I am lucky compared to many others .. I am scared like many others and again while nobody here will give me medical advise it does not hurt to hear your stories and maybe start thinking more positively. Again I am very open to talk to a medical professional for a 2nd option and sorry if my way was wrong. Desperation !

PS. While I live in the UK, I am Greek with some Australian 😉

Mario (the stranger from the UK)

@mariouk

Hi Teresa been a while hope you are well. Central is an uncommon pancreatic resection that only removes the body of the pancreas . It’s not common due the effort taken to reconstruct the tail of the pancreas and somehow stitch the whole thing together . It gives patients a better long term prognosis but surgeons don’t like it due to the extra risks with the reconstruction. Some surgeons call it the middle resection

Jump to this post

I appreciate the explanation, @mariouk. From what I understand your next procedure will be in September and it will be a EUS/FNA.

Did this recent follow-up include an MRI and blood work?

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I had an MRI last week but no blood tests . As well the surgeon did recommend that we proceed with only MRI from now on but I challenged him to have an EUS/FNA instead , which he was not happy about . But as they missed the cytology I want that done

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@mariouk As I recall you have had one EUS, is that correct? ,

I did as well. I did not have any cytology work done at that time because the doctor thought it was obviously an IPMN with no cause for concern about any cancer due to the size and location.

Since then, I've just followed up with MRIs every other year. I'm not sure what the protocol in the UK is, though.

I have the feeling that you want the FNA as assurance that no cancer is present. Am I correct?

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That’s correct as I was supposed to have a cytology report but the lab made a mistake and didn’t complete one. While the whole medical team, due to my very low CEA, think I am a low risk, I personally need a bit more reassurances which I do appreciate that the cytology might not give 100%.

The decision now is MRI every 6 months which I am very happy with but I want the cytology report as they are still not 100% what kind of cyst it is.

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