Six non Invasive IPMNs

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)

@mariouk

Hey @hopeful33250 (Teresa)..

I really need to stop updating you so late at night as I am too tired and make no sense.

The doctors will continue treating me as an IPMN patient as they can’t be 100% certain what my cysts are. By treating me as an IPMN patient we are playing the safe game. I am having an MRCP because thats the general recommendation to my size cyst (scans every 6 months) alternating between MRCP and EUS/FNA.

In regards the CEA , mine was not collected through blood but it was collected through pancreatic fluid. After my badly written msg last night , I searched the Internet and it seems that they are two types of CEA which have led to the confusion.

In a nutshell I was hoping others had their CEA measured using FNA and not through bloods so we can compare values 🙂

I will , like always, keep you updated and please do tag me if I can help others with IPMN but there is a good chance I will be quiet for a while, until the next scan, nothing personal 😉

Mario

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Mario, I’m not a doctor but I had I had an IPMN cyst removed from the tail of my pancreas in January. Before that I had an EUS/FNA. CEA measurements indicate If your cyst has mucin in it or not. It doesn’t tell you whether or not you have cancer. A high CEA from the cyst itself means the cyst has mucin in it. A low CEA means your dealing with another type of cyst. It really doesn’t matter the CEA number. I believe if it’s over 192 then it’s considered elevated. Mine was in the thousands but I didn’t have cancer. I had high grade dysplasia. I think you might be confusing to CEA levels in the actual cyst verses CA 19-9 which i believe is a blood test to search for pancreatic cancer

REPLY
@carlz

Hello. I had a distal pancreatectomy in January I had a side branch IPMN with high grade Dysplasia in a tail of my pancreas. No cancer was found. I also had my spleen removed. I am 54 years old. My next MRCP is in January or February 2022. I’m concerned because I feel there is something more the doctors could be doing now but they don’t know what to do. What I mean is the remnant pancreas the head and body are at risk for another IPMN or cancer. Also I understand the average time that another IPMN will appear is 24 months to 10 years. I’m scared. I had thyroid cancer when I was 23 they removed my thyroid, lymph nodes and some connective tissue but then they followed up with me drinking radioactive iodine for anything microscopic in my body and they saved my life. They save my life again removing the IPMN cyst, but Is there any research going on or a specific doctor I could contact that once an IPMN is removed, they could give something to you to kill anything microscopic? Since IPMN is a field defect and A precursor to cancer are there any doctors working on trials or experiments I could be a part of?

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Hello @carlz and welcome to Mayo Clinic Connect. Your concern about IPMN is understandable. I've also been diagnosed with IPMN and I have had a EUS and follow-up MRIs for a number of years. Having had a history of carcinoid cancer of the upper digestive tract, I do understand your concern. Do you have a lot of symptoms that are bothersome to you now?

You said in your post, "No cancer was found." That was certainly good news! Regarding following up sooner than your next MRCP in 2022, you might contact your doctor's office (through the patient portal or through a phone call) and see if you could have blood work done to check on the pancreas functioning. Perhaps that would give you some peace of mind.

In the meantime, here is some information about IPMNs from Mayo Clinic's website, https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/more-data-needed-to-guide-pancreatic-cyst-management/mac-20430487.

If you feel a need for a second opinion, I encourage you to do so. It is important for us all to be our own advocates in the matter of our health care. Have you considered making an appointment at a Mayo Clinic facility? There are three in the U .S. One in Minnesota, Florida, and Arizona. Here is information regarding making an appointment, https://www.mayoclinic.org/appointments?mc_id=us&utm_source=connect&utm_medium=l&utm_content=discussion&utm_campaign=mayoclinic&geo=national&placementsite=enterprise&cauid=101653.

I hope that you can resolve the uncertainly you feel about follow-up treatment. Will you keep in touch and post again?

REPLY
@carlz

Hello. I had a distal pancreatectomy in January I had a side branch IPMN with high grade Dysplasia in a tail of my pancreas. No cancer was found. I also had my spleen removed. I am 54 years old. My next MRCP is in January or February 2022. I’m concerned because I feel there is something more the doctors could be doing now but they don’t know what to do. What I mean is the remnant pancreas the head and body are at risk for another IPMN or cancer. Also I understand the average time that another IPMN will appear is 24 months to 10 years. I’m scared. I had thyroid cancer when I was 23 they removed my thyroid, lymph nodes and some connective tissue but then they followed up with me drinking radioactive iodine for anything microscopic in my body and they saved my life. They save my life again removing the IPMN cyst, but Is there any research going on or a specific doctor I could contact that once an IPMN is removed, they could give something to you to kill anything microscopic? Since IPMN is a field defect and A precursor to cancer are there any doctors working on trials or experiments I could be a part of?

Jump to this post

Hi @carlz first of all I am sorry for what you are going through and I do very well understand the fears as I am the author of the post. To help you, I would like to politely challenge you if thats ok 🙂 . As well I do apologize in advance if my 1 point has offended anyone.

1. IPMN are NOT definite pre-cancer indicator at all. They are indeed cysts that can carry a risk but they are not cancer or mean they will turn into cancer. If that was the case, pancreatic cancer would have been the most common cancer and by far the largest death cancer cause. Because PC is one of the less common cancers, is why unfortunately it does have such a low survival rate as there has been less focus, financial investment, etc.
2. I could be mistaken but there isnt any certainly that indicated that IPMNs come back. I am member of a Facebook group that focus on IPMNs only and 99% of the members there havent had new IPMNs appear (over 1000 members)
3. Precursors are indeed a weakness regarding IPMNs and if I may say you are a good example as the docs took a calculated risk to undertake the surgery and now they know it was not cancer. It sucks that we can land and communicate with robots in Mars but we dont have a definite 100% indicator if a specific IPMN can turn or not. It sucks !

Again great news that you didnt have cancer and you most likely never do from an IPMN. You are young and you are under great medical care and you have options. You are an inspiration to people like myself as you have had the operation and you are doing well! I am trusting my medical team that they changed their view from lets remove your whole pancreas to you are now a very low risk. Will I ever know for sure if that was a stupid or an clever decision I dont know and I hope I will never find out?

The mojo of the Facebook group is that "You will die with an IPMN in you but not from the IPMN"

REPLY
@mariouk

Hi @carlz first of all I am sorry for what you are going through and I do very well understand the fears as I am the author of the post. To help you, I would like to politely challenge you if thats ok 🙂 . As well I do apologize in advance if my 1 point has offended anyone.

1. IPMN are NOT definite pre-cancer indicator at all. They are indeed cysts that can carry a risk but they are not cancer or mean they will turn into cancer. If that was the case, pancreatic cancer would have been the most common cancer and by far the largest death cancer cause. Because PC is one of the less common cancers, is why unfortunately it does have such a low survival rate as there has been less focus, financial investment, etc.
2. I could be mistaken but there isnt any certainly that indicated that IPMNs come back. I am member of a Facebook group that focus on IPMNs only and 99% of the members there havent had new IPMNs appear (over 1000 members)
3. Precursors are indeed a weakness regarding IPMNs and if I may say you are a good example as the docs took a calculated risk to undertake the surgery and now they know it was not cancer. It sucks that we can land and communicate with robots in Mars but we dont have a definite 100% indicator if a specific IPMN can turn or not. It sucks !

Again great news that you didnt have cancer and you most likely never do from an IPMN. You are young and you are under great medical care and you have options. You are an inspiration to people like myself as you have had the operation and you are doing well! I am trusting my medical team that they changed their view from lets remove your whole pancreas to you are now a very low risk. Will I ever know for sure if that was a stupid or an clever decision I dont know and I hope I will never find out?

The mojo of the Facebook group is that "You will die with an IPMN in you but not from the IPMN"

Jump to this post

I agree. My friend had IPMN removed thru Whipple procedure last year. He
had a hernia which is not uncommon afterward. Second surgery needed all
successful no cancer. He is very well now and out on his boat like usual.
It is far better to know for sure….always listen to your body!

REPLY
@carlz

Mario, I’m not a doctor but I had I had an IPMN cyst removed from the tail of my pancreas in January. Before that I had an EUS/FNA. CEA measurements indicate If your cyst has mucin in it or not. It doesn’t tell you whether or not you have cancer. A high CEA from the cyst itself means the cyst has mucin in it. A low CEA means your dealing with another type of cyst. It really doesn’t matter the CEA number. I believe if it’s over 192 then it’s considered elevated. Mine was in the thousands but I didn’t have cancer. I had high grade dysplasia. I think you might be confusing to CEA levels in the actual cyst verses CA 19-9 which i believe is a blood test to search for pancreatic cancer

Jump to this post

Hi Carl

I have spoken to my doc again about this and he did confirm that my CEA levels were measured by the cyst fluid which as you stated indicates if there is mucin or not. He said that as I had so low CEA Cyst Fluid they are not 100% this is an IPMN but they will treat it as such.He did indicate that there is a blood test CEA as well (not CA-19-9) but that is not really used for Pancreatic diagnosis. My CA-19-9 was extremely low as well so I am counting myself lucky compare to others

REPLY

And apologies if I am coming across too direct. I have programmed my brain to be aggressive when it comes to my situation and dont let the IPMN defeat me. I am not sick unless someone tells me otherwise

REPLY
@mariouk

Hi Carl

I have spoken to my doc again about this and he did confirm that my CEA levels were measured by the cyst fluid which as you stated indicates if there is mucin or not. He said that as I had so low CEA Cyst Fluid they are not 100% this is an IPMN but they will treat it as such.He did indicate that there is a blood test CEA as well (not CA-19-9) but that is not really used for Pancreatic diagnosis. My CA-19-9 was extremely low as well so I am counting myself lucky compare to others

Jump to this post

Thanks Mario. Keep in touch. I’m in the USA. I believe you’re in the UK? If you hear of anything ground breaking over there as far as pancreatic, please let me know. Carl

REPLY
@carlz

Thanks Mario. Keep in touch. I’m in the USA. I believe you’re in the UK? If you hear of anything ground breaking over there as far as pancreatic, please let me know. Carl

Jump to this post

Yes I am indeed over "sunny" London! The 3 topics I am following closely are

1. EUS/RFA (ablation of the cysts) . My consultant was against it due to pancreatitis risks
2. New urine test that can detect early PC. I have contacted the university and they informed me unfortunately that it does not cover IPMNs
3. Similar as 2 but new blood test that can early detect up to 30 cancers and PC is one of them

TBH 2 and 3 are not my focus as PC and IPMN are different ball games but 1 is something that I am very very curious about. I know that there are numerous studies/trials taking place in the USA as well in regards EUS/RFA

Feel free to contact me anytime as we are here to help each other and kick IPMN butt

REPLY
@mariouk

Yes I am indeed over "sunny" London! The 3 topics I am following closely are

1. EUS/RFA (ablation of the cysts) . My consultant was against it due to pancreatitis risks
2. New urine test that can detect early PC. I have contacted the university and they informed me unfortunately that it does not cover IPMNs
3. Similar as 2 but new blood test that can early detect up to 30 cancers and PC is one of them

TBH 2 and 3 are not my focus as PC and IPMN are different ball games but 1 is something that I am very very curious about. I know that there are numerous studies/trials taking place in the USA as well in regards EUS/RFA

Feel free to contact me anytime as we are here to help each other and kick IPMN butt

Jump to this post

Sounds great Mario. Thank you!

REPLY
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