1. < Pancreatic Cancer

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 Support Group.

skiball | @skiball | Apr 6, 2023
In reply to @skiball "Oh sorry to hear you had developed cancer. Of course my big concern. I go back..." + (show)
@skiball

Oh sorry to hear you had developed cancer. Of course my big concern. I go back and forth constantly. I have these past 9 years of no progression but I know this is not the be all and end all. I really appreciate you sharing your experience. All the best to you going forward and stay in touch as you feel up to it. Bev

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@ken240
Just a couple of questions, what prompted you to have that surgery? And it was after that that they discovered the cancer? Thanks~

REPLY
1 reply
ken240 | @ken240 | Apr 6, 2023
In reply to @skiball "@ken240 Just a couple of questions, what prompted you to have that surgery? And it was..." + (show)
@skiball

@ken240
Just a couple of questions, what prompted you to have that surgery? And it was after that that they discovered the cancer? Thanks~

Jump to this post

It's a bit of a long story, but I had been losing weight without trying in 2020, and I was wondering what was going on. So, I I had an ultrasound performed that actually missed the IPMN on the pancreas, but picked up minor spots on the liver. It was suggested then at that time to have an MRI to take a closer look at the liver. Ironically, the MRI (in 2021) said the liver was fine, but the pancreas had a cyst toward the tail. An EUS determined that the cyst was a benign IPMN. It was decided to surveil for a year, then another MRI. The second MRI showed a little growth (1 mm), the main duct showed marked dilation. I had the distal pancreatectomy and splenectomy in July 2022. An adenocarcinoma was found in the resected portion of the pancreas, but no spread, so was stage 1b at that point and started chemo a month later. Long story that isn't over yet. I hope the info is helpful, but everyone has a different story.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 6, 2023
In reply to @sonic997 "Hi Mario, I just stumbled upon your post from 10/20 and was hoping to see you..." + (show)
@sonic997

Hi Mario,

I just stumbled upon your post from 10/20 and was hoping to see you are well and how you made out?

Best, Lissa Canavan (stranger from NJ)

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I’m tagging @mariouk to ensure he sees your post and kind wishes.

REPLY
1 reply
skiball | @skiball | Apr 6, 2023
In reply to @ken240 "It's a bit of a long story, but I had been losing weight without trying in..." + (show)
@ken240

It's a bit of a long story, but I had been losing weight without trying in 2020, and I was wondering what was going on. So, I I had an ultrasound performed that actually missed the IPMN on the pancreas, but picked up minor spots on the liver. It was suggested then at that time to have an MRI to take a closer look at the liver. Ironically, the MRI (in 2021) said the liver was fine, but the pancreas had a cyst toward the tail. An EUS determined that the cyst was a benign IPMN. It was decided to surveil for a year, then another MRI. The second MRI showed a little growth (1 mm), the main duct showed marked dilation. I had the distal pancreatectomy and splenectomy in July 2022. An adenocarcinoma was found in the resected portion of the pancreas, but no spread, so was stage 1b at that point and started chemo a month later. Long story that isn't over yet. I hope the info is helpful, but everyone has a different story.

Jump to this post

Thank you for your quick response! I find this all so complicated, why one test misses something, picks up another, etc. And that most of us are non-medical people. We really have to be our own advocates, and I am grateful for this site and everyone's experiences. I hope to hear about your progress and that you have a good outcome. Thank you again! Bev

REPLY
Lissa | @sonic997 | Apr 7, 2023
In reply to @colleenyoung "I’m tagging @mariouk to ensure he sees your post and kind wishes." + (show)
@colleenyoung

I’m tagging @mariouk to ensure he sees your post and kind wishes.

Jump to this post

Thank you so very much.
You do such a wonderful admin job. I’m hoping if I have any hope to get through this nightmare to help others

REPLY
Lissa | @sonic997 | Apr 7, 2023
In reply to @ken240 "It's a bit of a long story, but I had been losing weight without trying in..." + (show)
@ken240

It's a bit of a long story, but I had been losing weight without trying in 2020, and I was wondering what was going on. So, I I had an ultrasound performed that actually missed the IPMN on the pancreas, but picked up minor spots on the liver. It was suggested then at that time to have an MRI to take a closer look at the liver. Ironically, the MRI (in 2021) said the liver was fine, but the pancreas had a cyst toward the tail. An EUS determined that the cyst was a benign IPMN. It was decided to surveil for a year, then another MRI. The second MRI showed a little growth (1 mm), the main duct showed marked dilation. I had the distal pancreatectomy and splenectomy in July 2022. An adenocarcinoma was found in the resected portion of the pancreas, but no spread, so was stage 1b at that point and started chemo a month later. Long story that isn't over yet. I hope the info is helpful, but everyone has a different story.

Jump to this post

Thank you for sharing. Makes me feel hopeless and right now I feel desperate for hope.

REPLY
1 reply
ken240 | @ken240 | Apr 7, 2023
In reply to @sonic997 "Thank you for sharing. Makes me feel hopeless and right now I feel desperate for hope." + (show)
@sonic997

Thank you for sharing. Makes me feel hopeless and right now I feel desperate for hope.

Jump to this post

It's a tough situation for sure, but everyone's journey is different and individual. Even within the small community of this comment space, the experiences are varied. Treatments differ, doctors differ, patients differ, so it can be frustrating going through the process because there are some situations where solutions are not black and white, even though, as patients, we are striving for certainty. There are commenters here with success stories and some with difficult outcomes. The only for sure thing, in my opinion, is we are not alone in our struggles, and we try to help each other. Mine is but one single experience. Best wishes.

REPLY
1 reply
Lissa | @sonic997 | Apr 7, 2023
In reply to @ken240 "It's a tough situation for sure, but everyone's journey is different and individual. Even within the..." + (show)
@ken240

It's a tough situation for sure, but everyone's journey is different and individual. Even within the small community of this comment space, the experiences are varied. Treatments differ, doctors differ, patients differ, so it can be frustrating going through the process because there are some situations where solutions are not black and white, even though, as patients, we are striving for certainty. There are commenters here with success stories and some with difficult outcomes. The only for sure thing, in my opinion, is we are not alone in our struggles, and we try to help each other. Mine is but one single experience. Best wishes.

Jump to this post

Thank you Ken for taking the time to write to me. I so appreciate it. I’m going to read about everyone’s experiences as much as possible and I’m hoping I have a future to pay everyone’s kindness forward

REPLY
Mario | @mariouk | Apr 8, 2023

Hey Ken thank you for sharing your story! I hope you make a full recovery and this is the end of the difficult journey and beginning of a better one.

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