1. < Pancreatic Cancer

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 Support Group.

Mario | @mariouk | Mar 31, 2021
In reply to @carlz "Mario, I’m not a doctor but I had I had an IPMN cyst removed from the..." + (show)
@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
1 reply
Mario | @mariouk | Mar 31, 2021

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
carlz | @carlz | Mar 31, 2021
In reply to @mariouk "Hi Carl I have spoken to my doc again about this and he did confirm that..." + (show)
@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
1 reply
Mario | @mariouk | Mar 31, 2021
In reply to @carlz "Thanks Mario. Keep in touch. I’m in the USA. I believe you’re in the UK? If..." + (show)
@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
1 reply
carlz | @carlz | Mar 31, 2021
In reply to @mariouk "Yes I am indeed over "sunny" London! The 3 topics I am following closely are 1...." + (show)
@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
Mario | @mariouk | Jul 6, 2021

I am back 🙂 and I hope you are all WELL !

I had my 6 months results today and it is all over the place. Overall good news that there are NO changes

The surgeon recommended to continue with the same schedule of 6 months MRCPs and if there are any changes to have a whipple. That is when things got a bit off-piste I wanted to know more data that he couldnt provide such as

1. What kind of cyst is it ?

Not sure apart that it is benign and it is not a simple cyst. It is either IPMN or a tumor. Very very small chance of SCN.

2. Can we miss cancer if we wait?

As per any doc he will never say 100% and I do appreciate that. He said yes we can miss cancer but the changes normally are very visible.

3. Why was my CEA so low?

No comment

4. What kind of surgery ?

He suggested Whipple , I then challenge him with distal and he finally said Central. That really annoyed me as I wanted him to drive the decision not me .

With a lot of back and forth and maybe me been a bit rude , we agreed to do another EUS/FNA in sept as the cytology was missed last time.

Thats my 5 cents update. Here if I can help any other IPMN patients

Mario

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 6, 2021
In reply to @mariouk "I am back :) and I hope you are all WELL ! I had my 6..." + (show)
@mariouk

I am back 🙂 and I hope you are all WELL !

I had my 6 months results today and it is all over the place. Overall good news that there are NO changes

The surgeon recommended to continue with the same schedule of 6 months MRCPs and if there are any changes to have a whipple. That is when things got a bit off-piste I wanted to know more data that he couldnt provide such as

1. What kind of cyst is it ?

Not sure apart that it is benign and it is not a simple cyst. It is either IPMN or a tumor. Very very small chance of SCN.

2. Can we miss cancer if we wait?

As per any doc he will never say 100% and I do appreciate that. He said yes we can miss cancer but the changes normally are very visible.

3. Why was my CEA so low?

No comment

4. What kind of surgery ?

He suggested Whipple , I then challenge him with distal and he finally said Central. That really annoyed me as I wanted him to drive the decision not me .

With a lot of back and forth and maybe me been a bit rude , we agreed to do another EUS/FNA in sept as the cytology was missed last time.

Thats my 5 cents update. Here if I can help any other IPMN patients

Mario

Jump to this post

I really appreciate the update @mariouk. It is good when things remain basically "unchanged." I can understand your frustration in not being able to get answers to your questions. It is difficult to be dealing with a potentially serious problem and not get clear-cut answers. Truth be told, sometimes there aren't clear-cut answers.

I'm not understanding one part of your post. You said that the doctor talked of a Whipple and you suggested "distal" and he said "Central." What does Central refer to?

REPLY
Mario | @mariouk | Jul 6, 2021

Hi Teresa been a while hope you are well. Central is an uncommon pancreatic resection that only removes the body of the pancreas . It’s not common due the effort taken to reconstruct the tail of the pancreas and somehow stitch the whole thing together . It gives patients a better long term prognosis but surgeons don’t like it due to the extra risks with the reconstruction. Some surgeons call it the middle resection

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 6, 2021
In reply to @mariouk "Hi Teresa been a while hope you are well. Central is an uncommon pancreatic resection that..." + (show)
@mariouk

Hi Teresa been a while hope you are well. Central is an uncommon pancreatic resection that only removes the body of the pancreas . It’s not common due the effort taken to reconstruct the tail of the pancreas and somehow stitch the whole thing together . It gives patients a better long term prognosis but surgeons don’t like it due to the extra risks with the reconstruction. Some surgeons call it the middle resection

Jump to this post

I appreciate the explanation, @mariouk. From what I understand your next procedure will be in September and it will be a EUS/FNA.

Did this recent follow-up include an MRI and blood work?

REPLY
Mario | @mariouk | Jul 7, 2021

I had an MRI last week but no blood tests . As well the surgeon did recommend that we proceed with only MRI from now on but I challenged him to have an EUS/FNA instead , which he was not happy about . But as they missed the cytology I want that done

REPLY
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