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)

@hopeful33250

So pleased for your update, @mariouk! That is very good news. Just one question: what is an MDT?

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It’s multidisciplinary team meeting that make critical hospital decisions

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@mariouk

Update :

Had my EUS/FNA this morning and got very good news.

The largest cyst is not 42mm but 38mm and that was a big positive surprise.

Zero worrisome features at all ! The doc believes that those IPMNs don’t look not aggressive but the biopsy will tell us more.

Next steps are the biopsy results , MDT and then decide. I am still waiting for an date to discuss in general what are the surgical options with the surgeon and I was told he will contact me after the biopsy .

Today was a great day 🙂

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Full of typos again !

They do it look aggressive was the right terminology. Let’s wait for the results but I am enjoying the moment.

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Hey all , sorry for the silence as I am still waiting for the consultant to be free to see me ,4 weeks after EUS/FNA. The appointment is this Saturday so I will share the results .

I did briefly spoke to the surgeon as well and while he didn’t want to disclose much without the biopsy results (he didn’t have them either) , he said that the surgery is not off the table regardless of the biopsy result due to the fact that the cyst is larger than 3cm. These health professionals do confuse me . One moment it is no surgery as size doesn’t matter , next the fluid is not mucous but can still be IPMN ,how is that possible as IPMN means mucous cyst and now back to surgery ! Good news the surgery is safe he said but it carries complications but safe ! I think the surgeon was really trying to get off the phone with me so he was saying anything to get me off , lol 😆

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@mariouk I'm glad to hear that you should have some answers after your appointment on Saturday. I look forward to hearing from you!

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Update :

It was all good news!

CEA Level : 22
Very smooth cyst walls
All my cysts are empty inside
Zero main duct dilation
And they look like they are gastric side branch IPMN that carry the lowest risk

Next steps:

Scans every 6 months for the first year and then we will review cadence (maybe once a year)

Thank you all for your support and don’t worry I am not going anywhere 🙂

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@mariouk

Update :

It was all good news!

CEA Level : 22
Very smooth cyst walls
All my cysts are empty inside
Zero main duct dilation
And they look like they are gastric side branch IPMN that carry the lowest risk

Next steps:

Scans every 6 months for the first year and then we will review cadence (maybe once a year)

Thank you all for your support and don’t worry I am not going anywhere 🙂

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@mariouk
Such good, good news! I'm glad that you are not going anywhere as well.
May I include you in any conversations with others who have IPMN?

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@hopeful33250

@mariouk
Such good, good news! I'm glad that you are not going anywhere as well.
May I include you in any conversations with others who have IPMN?

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Of course you can and it will be my pleasure to help @hopeful33250 / Teresa

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Update: Randomly my consultant called me and it seems that the hospital missed that cytology test but due to my CEA levels been so low , the MDT council believe that my cysts might not be mucinous .. The decision is now for me to have an MRCP in a different hospital that offers more protocols in June (6 months gap) and then another EUS/FNA 6 months after that. Depending on finding I might be then scanned every year …

The consultant said that my cea levels were very low (26.9) and benign but at the same time said that cea isn’t a cancer tumour marker ! My amylase levels were confusing him too as those are atypical for IPMN (63).

Any suggestions on what is CEA really ( dr google has been all over the place) and if indeed a low CEA means that my cysts are not mucinous , then what are they ? I know you wouldn’t know just having a fun vent

Consultant thinks now that my pancreas might have a disease that generates simple cysts but as they can’t prove either belief we will proceed down the path of IPMN monitoring, which to be honest it’s not a bad result at all. I prefer been monitored than not 🙂

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@mariouk

Update: Randomly my consultant called me and it seems that the hospital missed that cytology test but due to my CEA levels been so low , the MDT council believe that my cysts might not be mucinous .. The decision is now for me to have an MRCP in a different hospital that offers more protocols in June (6 months gap) and then another EUS/FNA 6 months after that. Depending on finding I might be then scanned every year …

The consultant said that my cea levels were very low (26.9) and benign but at the same time said that cea isn’t a cancer tumour marker ! My amylase levels were confusing him too as those are atypical for IPMN (63).

Any suggestions on what is CEA really ( dr google has been all over the place) and if indeed a low CEA means that my cysts are not mucinous , then what are they ? I know you wouldn’t know just having a fun vent

Consultant thinks now that my pancreas might have a disease that generates simple cysts but as they can’t prove either belief we will proceed down the path of IPMN monitoring, which to be honest it’s not a bad result at all. I prefer been monitored than not 🙂

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I appreciate this rather interesting update, @mariouk. I checked on a U. S. website that gives information on lab tests. Here is the link where you can find information about the CEA test, https://labtestsonline.org/tests/carcinoembryonic-antigen-cea.

So, let me be sure I understand. You need to decide on having an MRCP in order to more clearly define that pancreatic cyst disorder. Is that correct?

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Hey @hopeful33250 (Teresa)..

I really need to stop updating you so late at night as I am too tired and make no sense.

The doctors will continue treating me as an IPMN patient as they can’t be 100% certain what my cysts are. By treating me as an IPMN patient we are playing the safe game. I am having an MRCP because thats the general recommendation to my size cyst (scans every 6 months) alternating between MRCP and EUS/FNA.

In regards the CEA , mine was not collected through blood but it was collected through pancreatic fluid. After my badly written msg last night , I searched the Internet and it seems that they are two types of CEA which have led to the confusion.

In a nutshell I was hoping others had their CEA measured using FNA and not through bloods so we can compare values 🙂

I will , like always, keep you updated and please do tag me if I can help others with IPMN but there is a good chance I will be quiet for a while, until the next scan, nothing personal 😉

Mario

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@mariouk

Hey @hopeful33250 (Teresa)..

I really need to stop updating you so late at night as I am too tired and make no sense.

The doctors will continue treating me as an IPMN patient as they can’t be 100% certain what my cysts are. By treating me as an IPMN patient we are playing the safe game. I am having an MRCP because thats the general recommendation to my size cyst (scans every 6 months) alternating between MRCP and EUS/FNA.

In regards the CEA , mine was not collected through blood but it was collected through pancreatic fluid. After my badly written msg last night , I searched the Internet and it seems that they are two types of CEA which have led to the confusion.

In a nutshell I was hoping others had their CEA measured using FNA and not through bloods so we can compare values 🙂

I will , like always, keep you updated and please do tag me if I can help others with IPMN but there is a good chance I will be quiet for a while, until the next scan, nothing personal 😉

Mario

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Thanks for the added information, @mariouk, I hope that others may be able to help you with your question about CEA measurements.

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Hello. I had a distal pancreatectomy in January I had a side branch IPMN with high grade Dysplasia in a tail of my pancreas. No cancer was found. I also had my spleen removed. I am 54 years old. My next MRCP is in January or February 2022. I’m concerned because I feel there is something more the doctors could be doing now but they don’t know what to do. What I mean is the remnant pancreas the head and body are at risk for another IPMN or cancer. Also I understand the average time that another IPMN will appear is 24 months to 10 years. I’m scared. I had thyroid cancer when I was 23 they removed my thyroid, lymph nodes and some connective tissue but then they followed up with me drinking radioactive iodine for anything microscopic in my body and they saved my life. They save my life again removing the IPMN cyst, but Is there any research going on or a specific doctor I could contact that once an IPMN is removed, they could give something to you to kill anything microscopic? Since IPMN is a field defect and A precursor to cancer are there any doctors working on trials or experiments I could be a part of?

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