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 Not being a medical authority here, I can only tell you what was done for my husband. He had the EUS, the standard diagnosis tool, to visualize the cysts within the pancreas and determine if there was nearby spread of tumor or vessel involvement—in other words to know if he was a candidate for surgery. He actually had two EUSs prior to surgery. At the first one, the physician chose not to do a fine needle aspiration biopsy I believe because with the size and appearance of his cysts it was a given that he needed surgery and she did not want to unnecessarily risk the chance of pancreatitis that attends this invasive procedure. The surgeon afterward decided he did in fact want the additional information of a biopsy so he underwent a second EUS with fine needle aspiration biopsies. Because his malignancy was early and the cyst wasn’t fully enveloped with cancer cells the random punctures no doubt missed it. I understand that if a person has jaundice and hence, suspected obstruction of ducts, then an ERCP Is performed so that a stent could be placed. No such jaundice or situation was present for my husband. Hope this helps. I understand your wish to understand as much as you can, especially so you know what questions you want to ask. It is apparent you wish to be included as an active member of your care team, I hope your physicians understand this. I also suspect with a bit of time, you will reach a level of comfort with the information you have, and you will feel more settled.

REPLY
@susan2018

@mariouk Not being a medical authority here, I can only tell you what was done for my husband. He had the EUS, the standard diagnosis tool, to visualize the cysts within the pancreas and determine if there was nearby spread of tumor or vessel involvement—in other words to know if he was a candidate for surgery. He actually had two EUSs prior to surgery. At the first one, the physician chose not to do a fine needle aspiration biopsy I believe because with the size and appearance of his cysts it was a given that he needed surgery and she did not want to unnecessarily risk the chance of pancreatitis that attends this invasive procedure. The surgeon afterward decided he did in fact want the additional information of a biopsy so he underwent a second EUS with fine needle aspiration biopsies. Because his malignancy was early and the cyst wasn’t fully enveloped with cancer cells the random punctures no doubt missed it. I understand that if a person has jaundice and hence, suspected obstruction of ducts, then an ERCP Is performed so that a stent could be placed. No such jaundice or situation was present for my husband. Hope this helps. I understand your wish to understand as much as you can, especially so you know what questions you want to ask. It is apparent you wish to be included as an active member of your care team, I hope your physicians understand this. I also suspect with a bit of time, you will reach a level of comfort with the information you have, and you will feel more settled.

Jump to this post

Thank you again Susan.

REPLY

Update: I have been referred to a new gastro that specializes on IPMN/Cysts and they have decided to run more scans. EUS/FNA next but no dates either. My first consultation is next Thursday and we will take it from there. I see that as a positive update 🙂

REPLY
@mariouk

Update: I have been referred to a new gastro that specializes on IPMN/Cysts and they have decided to run more scans. EUS/FNA next but no dates either. My first consultation is next Thursday and we will take it from there. I see that as a positive update 🙂

Jump to this post

I'm so glad for the update, @mariouk. Yes, I see that as positive as well. A lot of tests can be done before the need for surgery is determined.

Will you provide an update after you see the new specialist next Thursday?

REPLY

Of course I will 🙂 . Anyway I can be helpful

Another news , my parents spoke to a specialist back in Greece and they have seen cases where the IPMN have shrunk especially if you give your pancreas a bit of a break with your diet ! I will take that as a ‘rumour’ and not that my diet was bad before but now I have cut down all alcohol and unhealthy fat ! Extreme yes but hey have nothing to lose

Be safe out there

REPLY
@mariouk

Of course I will 🙂 . Anyway I can be helpful

Another news , my parents spoke to a specialist back in Greece and they have seen cases where the IPMN have shrunk especially if you give your pancreas a bit of a break with your diet ! I will take that as a ‘rumour’ and not that my diet was bad before but now I have cut down all alcohol and unhealthy fat ! Extreme yes but hey have nothing to lose

Be safe out there

Jump to this post

That is an interesting idea, @mariouk. Eating a more pancreas-healthy diet can certainly not hurt anything and if it does help, all the better!

I look forward to hearing of any other ideas or suggestions that come your way!

REPLY

First of all I hope you are well !

Update from the new gastro :

None of my scans indicate any cancer risks and they are as certain as they can be able that at the moment.

Why are you recommending EUS/FNA?

There are 3 reasons why:

1. We are still not sure what kind of cyst those are ? There is still a small chance that those are simple cysts. A CEA test will confirn the type of cyst (nothing else)
2. If they are an IPMN we want to check the liquid and understand if the cyst will most likely remain benign (low risk) or if it of a higher risk
3. Check for nodules inside the cyst . The MRI has shown none but we want to have a better look

Other information that he shared:

IPMN are very common these days but it is sitll a very new medical finding. A lot of unknowns still and lack of history. My IPMN could have been there for decades and unfortunately we will never be able to find that. The overall risk of IPMN turning to maligant is 1 in 300 so the risks overall are small. Another thing to be aware is that IPMN cancer is different from the known pancreatic cancer and it has a much better prognosis. They are not directly related but in some rare situations IPMN cancer can lead to pancreatic duct cancer. IPMN Cancer can be caught easily and "cured" by surgery very efficiently but surgery is the last resort (more on that below).

The fact that I do have numerous cysts does not raise my possibility of cancer as each cyst has its own history and future. As well he will not remove fluid from any cyst that is less than 2cm as the volume is not high enough to undertaking any testing. So we will only drain the large 4cm cyst.

I am not seen as a risk patient at the moment so my EUS/FNA will not be booked in for 2 – 6 weeks and COVID is not helping here.

Been Mario I jumped the gun and asked about surgery. He was taken back by my question and he wasnt comfortable talking about it but I did push him as it is my right to know.

Very very risky operation and always the last resort ! I knew it was risky and major but his face completely scared the crap out of me. And he was wearing a mask !!!!
Diabetes 3c is not even close to Diabetic Type 1. It is much more agressive and deadly (Why did I ask 🙂 ) .. The risks to my life after total removal increase dramatically and while yes I "can" live another 20 – 30 years it wont be an easy life at all, if I make it that far.

That is why doctors around the world dont operate on each IPMN or cyst find , it is too risky and no benefits.

He did want to stop the conversaton there but I wouldnt have it so I asked him to refer me to a surgeon ,which he will do but again his recommendation is against it as we are not going down that path yet at all . You guys might understand better but its not as easy for someone to take it step by step , or maybe I am wrong please tell me.I am an engineer by trade so my brain is trained to think of all angles and steps proactively. Overall again very "good" news and glad that someone gave me some stats such as there is 0.3% of a chance for an IPMN to turn and if it does we can still catch it. Not good about the surgery and the life after especially as I hoped with all the diabetic technological advancements it wont be as highy risky. For those that are diabetic , please allow me to say that I never stated that it is easy life been a diabetic but I am comparing to cancer ! Apologies if I have offended any one as that was not my intent.

As well I did receive a 2nd opinion from a top surgeon back in Greece. His response was exactly the same as the gastro specialist with the main difference was he was much more confortable about the surgery .His answer was again last resort but if we have to do so : "You will be in hospital for 10 days or so and then go home and manage your diabetes " 🙂 Greek people they are so relaxed , I wonder why I didnt pick up on that gene …

Sorry for the long update and the humor (laughing is the best medicine) and happy to answer any queries you might have.

Mario

REPLY
@mariouk

First of all I hope you are well !

Update from the new gastro :

None of my scans indicate any cancer risks and they are as certain as they can be able that at the moment.

Why are you recommending EUS/FNA?

There are 3 reasons why:

1. We are still not sure what kind of cyst those are ? There is still a small chance that those are simple cysts. A CEA test will confirn the type of cyst (nothing else)
2. If they are an IPMN we want to check the liquid and understand if the cyst will most likely remain benign (low risk) or if it of a higher risk
3. Check for nodules inside the cyst . The MRI has shown none but we want to have a better look

Other information that he shared:

IPMN are very common these days but it is sitll a very new medical finding. A lot of unknowns still and lack of history. My IPMN could have been there for decades and unfortunately we will never be able to find that. The overall risk of IPMN turning to maligant is 1 in 300 so the risks overall are small. Another thing to be aware is that IPMN cancer is different from the known pancreatic cancer and it has a much better prognosis. They are not directly related but in some rare situations IPMN cancer can lead to pancreatic duct cancer. IPMN Cancer can be caught easily and "cured" by surgery very efficiently but surgery is the last resort (more on that below).

The fact that I do have numerous cysts does not raise my possibility of cancer as each cyst has its own history and future. As well he will not remove fluid from any cyst that is less than 2cm as the volume is not high enough to undertaking any testing. So we will only drain the large 4cm cyst.

I am not seen as a risk patient at the moment so my EUS/FNA will not be booked in for 2 – 6 weeks and COVID is not helping here.

Been Mario I jumped the gun and asked about surgery. He was taken back by my question and he wasnt comfortable talking about it but I did push him as it is my right to know.

Very very risky operation and always the last resort ! I knew it was risky and major but his face completely scared the crap out of me. And he was wearing a mask !!!!
Diabetes 3c is not even close to Diabetic Type 1. It is much more agressive and deadly (Why did I ask 🙂 ) .. The risks to my life after total removal increase dramatically and while yes I "can" live another 20 – 30 years it wont be an easy life at all, if I make it that far.

That is why doctors around the world dont operate on each IPMN or cyst find , it is too risky and no benefits.

He did want to stop the conversaton there but I wouldnt have it so I asked him to refer me to a surgeon ,which he will do but again his recommendation is against it as we are not going down that path yet at all . You guys might understand better but its not as easy for someone to take it step by step , or maybe I am wrong please tell me.I am an engineer by trade so my brain is trained to think of all angles and steps proactively. Overall again very "good" news and glad that someone gave me some stats such as there is 0.3% of a chance for an IPMN to turn and if it does we can still catch it. Not good about the surgery and the life after especially as I hoped with all the diabetic technological advancements it wont be as highy risky. For those that are diabetic , please allow me to say that I never stated that it is easy life been a diabetic but I am comparing to cancer ! Apologies if I have offended any one as that was not my intent.

As well I did receive a 2nd opinion from a top surgeon back in Greece. His response was exactly the same as the gastro specialist with the main difference was he was much more confortable about the surgery .His answer was again last resort but if we have to do so : "You will be in hospital for 10 days or so and then go home and manage your diabetes " 🙂 Greek people they are so relaxed , I wonder why I didnt pick up on that gene …

Sorry for the long update and the humor (laughing is the best medicine) and happy to answer any queries you might have.

Mario

Jump to this post

@mariouk Hi Mario,

Please don't apologize for the long post, I'm so glad to hear your news which is certainly more optimistic than before! As a person with IPMN as well, I found the information very informative and helpful. I'm really glad that you do not have to worry about cancer and diabetes right now.

I look forward to hearing from you again as you go through this investigative process. Do you have an appointment scheduled for the EUS/FNA?

REPLY
@hopeful33250

@mariouk Hi Mario,

Please don't apologize for the long post, I'm so glad to hear your news which is certainly more optimistic than before! As a person with IPMN as well, I found the information very informative and helpful. I'm really glad that you do not have to worry about cancer and diabetes right now.

I look forward to hearing from you again as you go through this investigative process. Do you have an appointment scheduled for the EUS/FNA?

Jump to this post

@hopeful33250

Hi Teresa,

Unfortunately no dates yet but it will be anywhere between 2 – 6 weeks … As well I am glad I was able to give back to all that helped me in this forum ..

Ps. I dont recall if I mentioned, I did contact Mayo Clinic in London and they never got back to me :O … Maybe its not the real deal as the world class I have heard about Mayo

REPLY
@mariouk

@hopeful33250

Hi Teresa,

Unfortunately no dates yet but it will be anywhere between 2 – 6 weeks … As well I am glad I was able to give back to all that helped me in this forum ..

Ps. I dont recall if I mentioned, I did contact Mayo Clinic in London and they never got back to me :O … Maybe its not the real deal as the world class I have heard about Mayo

Jump to this post

I'm sorry that Mayo/London did not get back to you. Did you call by phone or use their website?

REPLY
Please sign in or register to post a reply.