Six non Invasive IPMNs

Posted by Mario @mariouk, Oct 21 6:55am

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)

Hi @mariouk, welcome to Mayo Clinic Connect. I can imagine that you're desperate, frightened and easily emotional with this new diagnosis. Thank goodness that investigations were done as a result of the acid reflux and the IPMNs (Intraductal papillary mucinous neoplasms) found.

I'd like to introduce you to fellow members @susan2018 @jeanne5009 @hopeful33250 @bonitav who have experience with IPMNs. While we wait for them to join this discussion, you may be interested in this conversation:
– Pancreatic Cancer arising from IPMN pancreatic cyst https://connect.mayoclinic.org/discussion/pancreatic-cancer-arising-from-ipmn-pancreatic-cyst/

In this discussion @kjrita @luckyone4321 @marvinjsturing and others talk about
– Total Pancreatectomy https://connect.mayoclinic.org/discussion/total-pancreatectomy/

Mario, you're asking all the right questions and good ones to ask the surgeon. I'm confident members can enlighten you with their experiences. Gathering from both expertise and experience is useful for decision making. When is your appointment to find out your options? Are second opinions common in the UK?

REPLY

@mariouk I am answering as the wife of a patient who had IPMN cysts and Whipple surgery at Mayo Rochester MN a year ago. Despite the sudden shock you have had, I’d like you to feel somewhat reassured, I see so much that is hopeful in your situation. Despite the diagnosis of IPMNs, apart from size and number, you appear to have no other worrisome indicators. My husband’s primary cyst was in the head of his pancreas, about the size of yours, but aside from size,had the additional concerns of nodules, wall thickening and duct dilation. Despite having an EUS and biopsies which became back negative for cancer, after surgery it was revealed there was indeed adenocarcinoma within the cyst. All Surgical margins and lymph nodes were clear. My husbands situation was an incidental finding when having tests for something else, as yours is, and for that we can feel so very lucky. I suspect you are getting recommendation for surgery because of size and extent of your IPMNs, and the real possibility of transformation into malignancy. Because pancreatic cancer is so insidious, so difficult to treat and with an unhappy prognosis, catching it early is a fortunate thing. Many times IPMNs are monitored for changes, but yours is already large. You will soon find out what is recommended in your case. My husband did not need to have a total removal of his pancreas because of the location of the IPMNs in the head—he does have about half of his left. It does not produce enough pancreatic enzymes so he does take Creon, but is still producing insulin so that he doesn’t need that, at least not now. I hope people who have had total removal can reassure you, my guess is the prognosis statistics you cite include all those who also end up with a diagnosis of adenocarcinima, which in fact Is a dismal prospect particularly when it has spread to lymph nodes and beyond. The main thing we know here is that the success of a surgery without complications Is largely dependent on having a surgeon and a hospital that does a large volume of Whipples. I don’t know your situation there. Mayo and Johns Hopkins are well known here in the USA. My husband’s surgeon was Dr Mark Truty. My husband is 74 and eleven months before his Whipple he had open heart bypass surgery and yet, he came through fine. It is not an easy surgery for surgeon or patient, but as you can see from my husband’s case, certainly possible. Even though all evidence of cancer was removed in my husband’s surgery, because of the insidiousness of Pancreatic Cancer he underwent 6 months of rugged chemotherapy beginning two months after surgery. In the US pre-surgery chemo is often administered as well if malignancy is present or to debulk a tumor off blood vessels in order for the patient to qualify for surgery. Now a year later he is regaining strength and has no evidence of disease. Brittle diabetics, those who produce no insulin, as someone without a pancreas would of course experience a major change in life circumstances. But treatment of diabetes with implanted pumps etc is so much improved nowadays that even that is hopeful. The one thing all my husband’s providers said is to be careful about online research. What we find there is often not current, statistics are outdated and don’t reflect the state of care today or the prognosis you should expect. Sending you very best wishes for your future care and healthy life to come. Hug your daugter!

REPLY
@susan2018

@mariouk I am answering as the wife of a patient who had IPMN cysts and Whipple surgery at Mayo Rochester MN a year ago. Despite the sudden shock you have had, I’d like you to feel somewhat reassured, I see so much that is hopeful in your situation. Despite the diagnosis of IPMNs, apart from size and number, you appear to have no other worrisome indicators. My husband’s primary cyst was in the head of his pancreas, about the size of yours, but aside from size,had the additional concerns of nodules, wall thickening and duct dilation. Despite having an EUS and biopsies which became back negative for cancer, after surgery it was revealed there was indeed adenocarcinoma within the cyst. All Surgical margins and lymph nodes were clear. My husbands situation was an incidental finding when having tests for something else, as yours is, and for that we can feel so very lucky. I suspect you are getting recommendation for surgery because of size and extent of your IPMNs, and the real possibility of transformation into malignancy. Because pancreatic cancer is so insidious, so difficult to treat and with an unhappy prognosis, catching it early is a fortunate thing. Many times IPMNs are monitored for changes, but yours is already large. You will soon find out what is recommended in your case. My husband did not need to have a total removal of his pancreas because of the location of the IPMNs in the head—he does have about half of his left. It does not produce enough pancreatic enzymes so he does take Creon, but is still producing insulin so that he doesn’t need that, at least not now. I hope people who have had total removal can reassure you, my guess is the prognosis statistics you cite include all those who also end up with a diagnosis of adenocarcinima, which in fact Is a dismal prospect particularly when it has spread to lymph nodes and beyond. The main thing we know here is that the success of a surgery without complications Is largely dependent on having a surgeon and a hospital that does a large volume of Whipples. I don’t know your situation there. Mayo and Johns Hopkins are well known here in the USA. My husband’s surgeon was Dr Mark Truty. My husband is 74 and eleven months before his Whipple he had open heart bypass surgery and yet, he came through fine. It is not an easy surgery for surgeon or patient, but as you can see from my husband’s case, certainly possible. Even though all evidence of cancer was removed in my husband’s surgery, because of the insidiousness of Pancreatic Cancer he underwent 6 months of rugged chemotherapy beginning two months after surgery. In the US pre-surgery chemo is often administered as well if malignancy is present or to debulk a tumor off blood vessels in order for the patient to qualify for surgery. Now a year later he is regaining strength and has no evidence of disease. Brittle diabetics, those who produce no insulin, as someone without a pancreas would of course experience a major change in life circumstances. But treatment of diabetes with implanted pumps etc is so much improved nowadays that even that is hopeful. The one thing all my husband’s providers said is to be careful about online research. What we find there is often not current, statistics are outdated and don’t reflect the state of care today or the prognosis you should expect. Sending you very best wishes for your future care and healthy life to come. Hug your daugter!

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Hey all and thanks ! After writing to you something ticked on inside me and I am the old Mario full of energy and now positivity ! Instead of reading studies , which are good when they are up to date and make sense I decided to read at the successful stories of actual patients ! As well I change my view of mortality vs success rate in the UK total which I did start with this post. I do appreciate and envy the success rate of Mayo and John Hopkins hospital which is around 99.02% but as I have learned with my situation 97% is extremely good ! I am still very very scared of the operation and if they find cancer which I think any human would be 🙂

What I then decided to do is contact a work colleague that I do recall been very proud of his insulin pump and I had a very long chat with him and he reassured me that life as a diabetic is not as bad as it used to be especially if you have self control and appreciate your position! Diabetic over cancer sorry I will take diabetic anytime 🙂 . He really opened my eyes and I will miss the freedom but again I will have unlimited hugs which are priceless.

My main concern now is if it is cancer and it has been misdiagnosed but from what I am reading you might have to get the pancreas out to be 100% !

Thank you so much for the time taking to reply and I hope @susan2018 your hubby is well 🙂

I do appreciate I will have a good days and bad days but today I spend a lot of time laughing and even played with my little priceless monkey when she was not stuck in front of the tv ! Maybe I am lucky that it was found this way and I hope that my news next week will keep me positive ! It’s going to be a very long journey but that will make me a better person and sometime I took life for granted (I always loved life but now I appreciate it).

Looking forward to getting to meet more of you and maybe help others

Pls ignore typos as I am trying to put monkey to bed 🙂

REPLY

Hello @mariouk,

I appreciate Colleen (@colleenyoung) tagging me on this conversation. I've had pancreatic cysts for several years now. Mine were found incidentally as well during an exam for something else. Originally, I had EUS but no biopsies were done as nothing looked problematic. Now have an MRI (which is the best test for tracking these cysts) on a somewhat regular basis. In the years when I don't have the MRI, I always request blood tests to track any potential problems with the functioning of the pancreas (Lipase). So far all is good.

How are your blood tests looking? Will you keep in touch and let me know how your treatment progresses?

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Hey @hopeful33250 many thanks for the reply . All my blood tests came back normal . The CA19-9 was normal levels ! I don’t know how to read the blood results as it seems that there isn’t a definite answer to if you have the c word or not !!

Btw great news that you are well and safe

I am curious on where the cysts were as mine seems to all be BD (again nobody will confirm anything which makes my mind dream / hope / fear)

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@mariouk

Hey @hopeful33250 many thanks for the reply . All my blood tests came back normal . The CA19-9 was normal levels ! I don’t know how to read the blood results as it seems that there isn’t a definite answer to if you have the c word or not !!

Btw great news that you are well and safe

I am curious on where the cysts were as mine seems to all be BD (again nobody will confirm anything which makes my mind dream / hope / fear)

Jump to this post

I am glad to hear that your blood work was normal, @mariouk. Did that include Lipase?

I can certainly understand your concerns. Do you have an upcoming appointment with a surgeon?

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I don’t know if I will get to talk to the surgeon ! It’s all a bit weird atm as my gastro seems to be the middle man! Maybe this week once the MDT has made the decision I will know or talk to the surgeon

I was told this is the surgeon that has been referred to my case but don’t know if that means he will call me :

royalmarsden.nhs.uk/our-consultants-units-and-wards/consultant-directory/mr-aamir-z-khan

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I have got my scans and my blood results now (SO curious so many picture make zero sense lol) ..

CA19-9 = 4
Lymphocytes = 2.2
Platelets (Plt) = 193
Neutrophils = 3.6
Monocytes = 0.4
Eosinophils = 0.2
Basophils = 0.0
Total Bilirubin = 18
ALP = 38
ALT = 20
GGT = 17
Albumin = 48
Total Protein = 75
Globulin = 27
CRP = 1.1
Amylase = 71

I cant see any tests for Lipase ? Shall I ask for another blood test 🙂

REPLY

Hello @mariouk,

Here is some information from a lab test website that explains what a lipase test is used for. Please read through the entire explanation. Here is the link,
https://labtestsonline.org/tests/lipase
This article also explains the Amylase test (which you have had) which seems similar.

Here is another article from WebMD that explains what a lipase test shows:
https://www.webmd.com/digestive-disorders/what-is-a-lipase-test#1-2
Perhaps your doctor thinks that the other tests give him a good view of your overall pancreatic functioning.

As you know, Mayo Connect cannot make diagnoses nor offer medical advice. We just share experiences and offer support. However, if you want to be certain, I would suggest that you contact your doctor's office and ask if the lipase test would be useful in your situation.

If you decided to check into it, I'd be interested in knowing what you find out.

REPLY
@susan2018

@mariouk I am answering as the wife of a patient who had IPMN cysts and Whipple surgery at Mayo Rochester MN a year ago. Despite the sudden shock you have had, I’d like you to feel somewhat reassured, I see so much that is hopeful in your situation. Despite the diagnosis of IPMNs, apart from size and number, you appear to have no other worrisome indicators. My husband’s primary cyst was in the head of his pancreas, about the size of yours, but aside from size,had the additional concerns of nodules, wall thickening and duct dilation. Despite having an EUS and biopsies which became back negative for cancer, after surgery it was revealed there was indeed adenocarcinoma within the cyst. All Surgical margins and lymph nodes were clear. My husbands situation was an incidental finding when having tests for something else, as yours is, and for that we can feel so very lucky. I suspect you are getting recommendation for surgery because of size and extent of your IPMNs, and the real possibility of transformation into malignancy. Because pancreatic cancer is so insidious, so difficult to treat and with an unhappy prognosis, catching it early is a fortunate thing. Many times IPMNs are monitored for changes, but yours is already large. You will soon find out what is recommended in your case. My husband did not need to have a total removal of his pancreas because of the location of the IPMNs in the head—he does have about half of his left. It does not produce enough pancreatic enzymes so he does take Creon, but is still producing insulin so that he doesn’t need that, at least not now. I hope people who have had total removal can reassure you, my guess is the prognosis statistics you cite include all those who also end up with a diagnosis of adenocarcinima, which in fact Is a dismal prospect particularly when it has spread to lymph nodes and beyond. The main thing we know here is that the success of a surgery without complications Is largely dependent on having a surgeon and a hospital that does a large volume of Whipples. I don’t know your situation there. Mayo and Johns Hopkins are well known here in the USA. My husband’s surgeon was Dr Mark Truty. My husband is 74 and eleven months before his Whipple he had open heart bypass surgery and yet, he came through fine. It is not an easy surgery for surgeon or patient, but as you can see from my husband’s case, certainly possible. Even though all evidence of cancer was removed in my husband’s surgery, because of the insidiousness of Pancreatic Cancer he underwent 6 months of rugged chemotherapy beginning two months after surgery. In the US pre-surgery chemo is often administered as well if malignancy is present or to debulk a tumor off blood vessels in order for the patient to qualify for surgery. Now a year later he is regaining strength and has no evidence of disease. Brittle diabetics, those who produce no insulin, as someone without a pancreas would of course experience a major change in life circumstances. But treatment of diabetes with implanted pumps etc is so much improved nowadays that even that is hopeful. The one thing all my husband’s providers said is to be careful about online research. What we find there is often not current, statistics are outdated and don’t reflect the state of care today or the prognosis you should expect. Sending you very best wishes for your future care and healthy life to come. Hug your daugter!

Jump to this post

@susan2018 If I may say I am curious what were the lessons learn and how the tests missed the cancer? While I am waiting for the decision and I have accepted the chance of an operation I am kind of person that needs data , I am an IT consultant so I will be first pushing for a EUS/FNA and I will push for an ERCP but if that is not a certainly then maybe I shouldnt play with fire . Did your hubby do an ERCP as I believe (could be wrong) that one checks for the duct cancer?

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@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.

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Thank you again Susan.

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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 🙂

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@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 🙂

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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?

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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

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