Benign or Malignant IPMN? What to do next?

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)

Interested in more discussions like this? Go to the Pancreatic Cancer group.

@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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@mariouk

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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Hello @mariouk

I was wondering how you are doing. Have you had any other MRIs yet? How are you feeling?

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@hopeful33250

Hello @mariouk

I was wondering how you are doing. Have you had any other MRIs yet? How are you feeling?

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Hi all

Interesting enough I did not get a notification about the update.

I am really well thank you and I do hope others are as well.

Overall not much of an update but I have been classified as the lowest of the low risk due to all my tests.

I have a MRCP in July that it came back with zero changes and I did request for another EUS\FNA due to the fact the FNA was not completed last time.

The FNA results were very basic but overall all my results were really positive apart from the size. Interesting enough in the UK they do not test the cysts genes/dna as when I was asked to share KRAS and GNAS I was told nope.

Anyway I have been now told to come back annually for a MRCP and take it from there. One very interesting comment from my surgeon was that he said the next 5 years will be critical as that timeline will define the next steps. Interesting indeed and all I can do is enjoy life to the max , keep healthy and positive and barely think of the IPMNs as let’s face it not much I can do.

Thank you for asking

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That is just great to hear, @mariouk! I'm glad that you have reason to be positive and move on with life. That is always a good thing.

I appreciate your update.

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Hi all,

I’m 27M and pretty anxious about what I’ve experienced earlier. Due to a slight upper abdominal pain, I went to visit my GP and had several blood tests and MRI with contrast done. My CA19-9, CEA and pancreatic enzymes all came out normal.
CA19-9: 2.3
CEA: 1.96

But the MRI with contrast result came out saying it detected a non-enhancing lesion seen on my pancreas tail, around 0.8cm. Suggested IPMN, or other pancreatic neoplasm.

Than I went to visit 2 hepatobiliary surgery doctor, both suggest me to do a PET-CT scan. 2 days later my PET-Ct report came out:

A pancreatic tail 8mm hypodense lesion shows homogeneous fat density and sharp border without F-FDG avidity on both early and delayed imaging, metabolic assessment indicates a benign pancreatic lesion such as pancreatic lipoma. And my doctor told me it is benign and just need a followed up annually with MRI.

Due to my anxiety, I went to visit 2 other hepatobiliary surgery specialists, and both said it most Likely benign, and need to be follow up annually. Although all 4 doctors recommend no surgery since it’ll be overtreatment, but than one of the 4 doctors said a very tiny white dot is seen on the cyst, which could be mural nodule. This has driven me back to the huge anxiety again. I can’t stop myself on thinking about what if it’ll became cancerous later on (Although all doctors said surgery will be totally fine if it gets bigger in a year and won’t affect my survival rate).

Please give me advice on what to do next.

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@loklcw

Hi all,

I’m 27M and pretty anxious about what I’ve experienced earlier. Due to a slight upper abdominal pain, I went to visit my GP and had several blood tests and MRI with contrast done. My CA19-9, CEA and pancreatic enzymes all came out normal.
CA19-9: 2.3
CEA: 1.96

But the MRI with contrast result came out saying it detected a non-enhancing lesion seen on my pancreas tail, around 0.8cm. Suggested IPMN, or other pancreatic neoplasm.

Than I went to visit 2 hepatobiliary surgery doctor, both suggest me to do a PET-CT scan. 2 days later my PET-Ct report came out:

A pancreatic tail 8mm hypodense lesion shows homogeneous fat density and sharp border without F-FDG avidity on both early and delayed imaging, metabolic assessment indicates a benign pancreatic lesion such as pancreatic lipoma. And my doctor told me it is benign and just need a followed up annually with MRI.

Due to my anxiety, I went to visit 2 other hepatobiliary surgery specialists, and both said it most Likely benign, and need to be follow up annually. Although all 4 doctors recommend no surgery since it’ll be overtreatment, but than one of the 4 doctors said a very tiny white dot is seen on the cyst, which could be mural nodule. This has driven me back to the huge anxiety again. I can’t stop myself on thinking about what if it’ll became cancerous later on (Although all doctors said surgery will be totally fine if it gets bigger in a year and won’t affect my survival rate).

Please give me advice on what to do next.

Jump to this post

Attached photo will be my MRI contrast showing the cyst.

REPLY
@loklcw

Hi all,

I’m 27M and pretty anxious about what I’ve experienced earlier. Due to a slight upper abdominal pain, I went to visit my GP and had several blood tests and MRI with contrast done. My CA19-9, CEA and pancreatic enzymes all came out normal.
CA19-9: 2.3
CEA: 1.96

But the MRI with contrast result came out saying it detected a non-enhancing lesion seen on my pancreas tail, around 0.8cm. Suggested IPMN, or other pancreatic neoplasm.

Than I went to visit 2 hepatobiliary surgery doctor, both suggest me to do a PET-CT scan. 2 days later my PET-Ct report came out:

A pancreatic tail 8mm hypodense lesion shows homogeneous fat density and sharp border without F-FDG avidity on both early and delayed imaging, metabolic assessment indicates a benign pancreatic lesion such as pancreatic lipoma. And my doctor told me it is benign and just need a followed up annually with MRI.

Due to my anxiety, I went to visit 2 other hepatobiliary surgery specialists, and both said it most Likely benign, and need to be follow up annually. Although all 4 doctors recommend no surgery since it’ll be overtreatment, but than one of the 4 doctors said a very tiny white dot is seen on the cyst, which could be mural nodule. This has driven me back to the huge anxiety again. I can’t stop myself on thinking about what if it’ll became cancerous later on (Although all doctors said surgery will be totally fine if it gets bigger in a year and won’t affect my survival rate).

Please give me advice on what to do next.

Jump to this post

IPMN in Pancreatic tail

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@loklcw

Hi all,

I’m 27M and pretty anxious about what I’ve experienced earlier. Due to a slight upper abdominal pain, I went to visit my GP and had several blood tests and MRI with contrast done. My CA19-9, CEA and pancreatic enzymes all came out normal.
CA19-9: 2.3
CEA: 1.96

But the MRI with contrast result came out saying it detected a non-enhancing lesion seen on my pancreas tail, around 0.8cm. Suggested IPMN, or other pancreatic neoplasm.

Than I went to visit 2 hepatobiliary surgery doctor, both suggest me to do a PET-CT scan. 2 days later my PET-Ct report came out:

A pancreatic tail 8mm hypodense lesion shows homogeneous fat density and sharp border without F-FDG avidity on both early and delayed imaging, metabolic assessment indicates a benign pancreatic lesion such as pancreatic lipoma. And my doctor told me it is benign and just need a followed up annually with MRI.

Due to my anxiety, I went to visit 2 other hepatobiliary surgery specialists, and both said it most Likely benign, and need to be follow up annually. Although all 4 doctors recommend no surgery since it’ll be overtreatment, but than one of the 4 doctors said a very tiny white dot is seen on the cyst, which could be mural nodule. This has driven me back to the huge anxiety again. I can’t stop myself on thinking about what if it’ll became cancerous later on (Although all doctors said surgery will be totally fine if it gets bigger in a year and won’t affect my survival rate).

Please give me advice on what to do next.

Jump to this post

Hi @loklcw First, take a deep breath and let it out slowly. Anxiety over test results can send us into panic mode instantly. We never want to think our body is letting us down.
At 27, the likelihood of you having pancreatic cancer is minimal. Statistically the majority of people who develop that cancer are over the age of 45, with most being well into their 60s.
Having had 4 hepatobiliary specialists review the MRI, blood test results and tell you it’s most likely benign should put you in a fairly high level of comfort that this is nothing to worry about.
With annual MRIs they’ll be able to keep an eye on this fatty cyst to make sure it doesn’t change. You may go through life with this little blemish on your pancreas without every having it change. And it puts you way ahead of the game if it does. Most pancreatic cancers are discovered secondary to other issues. If, and it’s a big IF, you have anything untoward happening there, it can be caught ahead of time and taken care of.

I found some discussions in our Connect forum with other people who have the discovery of IPMN on their pancreas. You might find some of the conversations informative as they share their experiences with the same diagnosis. One of my fellow mentors, Teresa @hopeful33250 has also had an IPMN and writes about it in this reply to @carlz in the discussion group, under 6 Non invasive IPMNs
https://connect.mayoclinic.org/comment/325595/
6 non invasive IPMN
~~
https://connect.mayoclinic.org/discussion/six-non-invasive-ipmns/
Living with ‘what ifs’ is a quality of life stealer. I think the newness of this discovery will start to fade into the background a little each day as you move forward, realizing you’re a healthy young male and have your life ahead of you to live to its fullest.

How are your original symptoms that lead you to this discovery in the first place? Have your abdominal pains subsided? Did any of the doctors feel this fatty tissue was the cause?

REPLY
@loklcw

Hi all,

I’m 27M and pretty anxious about what I’ve experienced earlier. Due to a slight upper abdominal pain, I went to visit my GP and had several blood tests and MRI with contrast done. My CA19-9, CEA and pancreatic enzymes all came out normal.
CA19-9: 2.3
CEA: 1.96

But the MRI with contrast result came out saying it detected a non-enhancing lesion seen on my pancreas tail, around 0.8cm. Suggested IPMN, or other pancreatic neoplasm.

Than I went to visit 2 hepatobiliary surgery doctor, both suggest me to do a PET-CT scan. 2 days later my PET-Ct report came out:

A pancreatic tail 8mm hypodense lesion shows homogeneous fat density and sharp border without F-FDG avidity on both early and delayed imaging, metabolic assessment indicates a benign pancreatic lesion such as pancreatic lipoma. And my doctor told me it is benign and just need a followed up annually with MRI.

Due to my anxiety, I went to visit 2 other hepatobiliary surgery specialists, and both said it most Likely benign, and need to be follow up annually. Although all 4 doctors recommend no surgery since it’ll be overtreatment, but than one of the 4 doctors said a very tiny white dot is seen on the cyst, which could be mural nodule. This has driven me back to the huge anxiety again. I can’t stop myself on thinking about what if it’ll became cancerous later on (Although all doctors said surgery will be totally fine if it gets bigger in a year and won’t affect my survival rate).

Please give me advice on what to do next.

Jump to this post

@loklcw Welcome to Mayo Clinic Connect. I hope your weekend has not been filled with the anxiety you speak of! It's pretty difficult to relax when you feel there are things out of your control, going on with your body, isn't it?

What @loribmt has mentioned, is accurate. If you are aware of a family history of cancer, specifically gastrointestinal cancers, I can understand your concern. But knowing that four hepatobiliary surgery doctors are all recommending annual MRIs should ease your mind. Usually a pancreatic cancer is found as an adjunct to other health issues being investigated, so you are definitely ahead of the curve there.

We can't take away anxiety if you choose to hold on to it, but I hope you will see that there is less reason to keep it in the forefront.
Ginger

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