Numerous IPMN no cancer

[mazza77]

Hi all,

I wish you are all “well” and staying positive .

I am a 43 years old male that on Sept 11th my world turned around !

For the past year or so I have been trying to lose some weight (slightly overweight) and in June I started experiencing acid reflux in my stomach that caused me to pause running .

Cut the story short in Sept I was referred to have an ultrasound to double check my stomach , which was fine but they found a 3cm cyst around my pancreas (Not in).

After CT it was confirmed that it was inside the pancreas but it was not malignant but I was asked to do an MRCP.

MRCP came back last week and now I have 6 IPMNs (yes 6) all over my pancreas . 4 are small under 1cm but the other 2 are 4.2cmx3.4cm and the other 1.2cm. My Gastroenterologist said he will refer me to the MDP. For the past 6 weeks I have been living scared and worry that I won’t see my little girls grow up. Today I broke down after the call from the MDP and I am barely holding it together.

The MDT couldn’t make a decision as I am having zero worrisome features but they have placed me in a very high bracket due to the last BD-IPMN and they have escalated my case to the London Surgeon MDT to decide what operation (if any) I should have.

The gastro explained that he is not the specialist on that area but most likely the recommendation as I am a “young “ fit individual would be to remove my whole pancreas! I do appreciate for some in this forum I might sound ungrateful and I am so sorry but I don’t understand why they need to do that if there are no risks yet. The gastro said that if I refuse the operation I will be taking a huge gamble and one that I can’t turn back from. I do appreciate that I have become a Google Doctor but BD IPMNs have a low risk level so why can’t they leave them alone !!!! Like I said I am a google doc and not a real one and we all need a bit of humour user this situation .

I am even more scared now as removing my pancreas and everything means (or might mean) that the quality of life will drop ! As well I don’t understand what is the life survival rate will be or if I die on the operating table. There are some things that I can’t control but I am trying to stay fit so I can be ready for an operation if I have to !!!

I would love to listen what changed in your life after the operation to remove your pancreas and I do appreciate that you can’t tell me everything will be ok ! I want to grow old next to my beautiful wife and daughter and we always wanted to travel every corner of the world . I hope I didn’t work my bottom off to not experience retirement

Sorry I am blabbing away and yes I might call a nurse tomorrow but is removal of the pancreas , part of the diet , a bad alternative! Yes cancer is the worse but this unfortunately ended been the 2nd worse

Love to hear for you and get to know you . Please again apologies if I sound selfish and I wish I could add some value to others in this forum !

Love,

Mario

[Flossy]

Hi Mario,

Sorry to hear about your situation, it is understandably frightening. All I can go off is what I have been through with my father, and I hope not to frighten you, but I’ll tell you what he’s been going through. He was diagnosed with innumerable bd ipmns in his pancreas in 2016. They were monitoring them with ct scans every few months. He also had a couple of Mrcps as well. Fast forward to April 19 when he started turning yellow, and he was diagnosed with pancreatic cancer, with path report stating ‘possible malignant transformation of ipmn’. He was fortunate in that he was operable so had a total pancreatectomy. Followed by 6 months of folfirinox. It was unsuccessful however and now has liver and peritoneum Mets. He only said to me yesterday after a dr visit, that he wishes he was given the option to have his pancreas removed while they were still ipmns, as it likely would not be in the position he is in now.

As far as living without a pancreas goes, it’s doable. The main adjustments he had was getting used to remembering to take Creon with every meal, and also the monitoring of blood sugars can be difficult. But again, it’s doable. However, as time has gone on it has become easier for him as he has learnt what may cause his sugars to rise or drop etc. It is not an easy operation by any means, but you are lucky they have been found now and have options.

Honestly, after witnessing what he has been through, we would give anything to turn back time and remove his pancreas when it was only ipmns. Think hard about which choice you make. It is your decision and only you can decide what is best for you, but I’ve seen the other side of it and it’s devastating. I really don’t want to frighten you, but it is an important decision. Be guided by your dr’s, and get other opinions to help you decide.

Best of luck to you ...

[mazza77]

Thank you flossy and I wish all the best for your dad ! My wife and my doc are both on the same page as have the operation and live ! Versus not and one day maybe regret it ! The thing that is bothering me is the the IF ! I do appreciate nobody can predict the future but .... it’s just an IF.

I am very scared but maybe I have misread the whole situation if I have my whole pancreas removed . Maybe with a bit of control I can live to turn a grumpy old man !! Wife says I am already that and I am 43

[mazza77]

May I please ask if the liver Mets came from the pancreas ? I am very new at this and sorry if it is a silly question.

[Flossy]

No worries at all. Yes the liver Mets and peritoneum are from the pancreas unfortunately. He had Folfirinox chemo last year, but it proved to be unsuccessful as his Ca19-9 (tumour marked) started to rise two months after finishing chemo, which then proved to be a recurrence in the kitchen we and pancreatic bed ( where the pancreas was removed from), He is now back on another type of chemo, but it seems to be progressing still.

I know it’s a big IF, but it’s a big enough one for me to treat it now. Funnily enough, while my father was having chemo, I started experiencing upset stomach etc. I saw a gastro who wanted me to have an Mrcp given my fathers history. They found that I was born with a type 1b choledochal cyst in my common bile duct. General rule for these cysts is resection as they are high risk for cancer, and my surgeon said the cancer that arises from these cysts are worse than pancreatic. . So, I had to have an 8 hour surgery called a hepaticojejunostomy with a roux en y reconstruction under my fathers surgeon, 6 months after dad. Needless to say last year was CRAP for us! It is extremely daunting when you are facing a major surgery such as this, and the accompanying lifestyle changes. However, pancreatic cancer is like dealing with the devil, and once that develops you have extremely limited options. I’m 43 also, with 4 children so needed to do what was best for my future with them.

[mazza77]

I am so sorry flossy !

My only fear now as I have done more research is surviving the operation! Yes I am thinking negatively and I can’t sleep ! You have helped me tremendously and I wish I could somehow do the same .

My surgeon will be the best person to tell me that

[Flossy]

No worries at all, it’s a big decision. Also be careful what you read online, as so much of the info on there is outdated. Just do your research on your dr, and hospital. And it’s your right to get a second, or third opinion.

Best of luck with everything.

[mazza77]

I would really love to talk to anyone that have had their whole pancreas removed and what to expect.

As well I called the nurses today and I spoke to Rachel which was lovely . So many unknown and what the future holds . All I can thinking about it death and I can’t stop. I am too scared to even look at my daughter. I need help