6 non invasive IPMN

FormerMember over 4 years ago

2 replies
22 subscribers
1629 views

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 upride down! !

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

Cut the story short, in 11th 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 MDT. For the past 6 weeks I have been living scared and worry that I won’t see my little girl grow up. Today I broke down after the call from the MDT 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 largest 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 would be that as I am a “young “ fit individual the best solution 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 to calm down this situation.

I am even more scared now as removing my pancreas might mean that the quality of life will drop so will my life expectancy ! 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 !!! Sorry trying to stay positive !

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

Yes having cancer is the worse scenario and I am very grateful I don't but this unfortunately I can’t be grateful enough to only think positively. I want to continue running , having fun and grow really old and grumpy with my amazing wife ! 2020 you seems to amaze me !

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

kevatvinegarhill over 4 years ago

Hi Mario

When I was first diagnosed with pc I too googled but then thought why should I do this when I can get advice direct from the experts. my allocated cancer nurse was always available. I agree with Martin that google whilst useful for many things medical information is not one of them

during my treatment I received copies of letters from the cancer unit to my gp and very often those letters contained medical terminology that I didn't understand so I trusted my consultant to tell me in plain English what was going on.

i had part of my pancreas removed and i questioned the surgeons as to how it would affect my way of life. a natural concern. Frankly it hasn't. Because of the amount of weight i lost the recovery period has been long but not arduous and slowly but surely my strength and some of the weight has recovered. the main benefit has been that i have given up alcohol , a small amount of scotch is what i permit myself purely for medicinal purposes you understand. this was not a diktat from the doctors but after the operation and during chemo alcohol[ beer ] just tasted awful so i gave up

the whole process of the operation plus 6 months of chemo wasn't unpleasant and now about a year after chemo finished i am feeling very well. i have been fortunate and whilst i do not discount future problems it is not something i worry about as i know i am in very good hands

The situation we suffers find ourselves in can be very traumatic but from my point of view i don't think why me i just look forward and wlll face an obstacles head on. it can be difficult to be positive but cancer is no longer a taboo subject and it really did help me to get through it all. One final point have you tried contacting a Maggies Centre which deal with individuals in our position. I can thoroughly recommend them. And finally, finally on this forum you are never alone. It helps to talk as someone once said.

Very best wishes

Kevin

FormerMember over 4 years ago in reply to kevatvinegarhill

Hi Kevin and I hope you are well! Thank you so so much for sharing !

Today I am in the fighting mood ! I am indeed lucky as I have been "unofficially" told I dont have cancer but I am a high risk of maybe getting it one day ! Unfortunately asking the experts has been a very bad experience for me due to covid. I have to email my gastro and he is the only person that I can contact . He has mentioned my case has been referred to what it seems an amazing General Surgeon , I cant contact him and to be fair dont need to until their provide me with the final options. I am angry as they wont confirm if I have cancer and I have asked them for all my reports and scans (they wanted to charge me for my scans but they didnt at the end). It was all private btw not NHS.

So as I have nobody to speak to I reaching out to the Internet but I have now learned to read success stories and read the surgery rate as 97% success vs 3% mortality ! Of course I do prefer that there was no mortality but 97% is not bad ! Again I need that data from the surgeon not the Internet !

I did reach out to the nurses at the pancreatic cancer forums and Rachel was amazing but I was in a really bad state yesterday that I was not thinking clearly.

I am now reaching out to ppl that I know that are diabetic to find how life is and in regards alcohol I dont really mind as I was never a big drinker and mostly wine or cider. I will miss the freedom but they are worse issues to deal with !

Maybe very unfair question but I do not understand why the total pancreas removal and whipple have such bad life long prognosis. Again selfish as my gastro keeps saying that he has some patients that have lived for years but nothing else.

Everywhere I read my case is rare and like my wife says I wanted to be special ;) ... As I have IPMNs all over but 3 of them in the tail as 3mm so I was hoping that I can challenge the surgeon if we were to go down the surgery why cant we do a whipple versus full removal. I know they wull say as that will leave 3 behind and that is a risk. But it must be a smaller risk and we can monitor it accordingly ! I am zooming away on my keyboard , he he he.

I have reached out to more doctors here and internationally to get a 2d, 3rd and so on opinions. For example why havent they done an EUS yet ?

Kevin and Martin (previous post), many thanks and I will reach out to Maggies Centre once I have more data from the gastro/surgeon

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