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.

@loklcw

Hi all,

I’m 27M and pretty anxious about what I’ve experienced earlier. Due to a slight upper abdominal pain, I went to visit my GP and had several blood tests and MRI with contrast done. My CA19-9, CEA and pancreatic enzymes all came out normal.
CA19-9: 2.3
CEA: 1.96

But the MRI with contrast result came out saying it detected a non-enhancing lesion seen on my pancreas tail, around 0.8cm. Suggested IPMN, or other pancreatic neoplasm.

Than I went to visit 2 hepatobiliary surgery doctor, both suggest me to do a PET-CT scan. 2 days later my PET-Ct report came out:

A pancreatic tail 8mm hypodense lesion shows homogeneous fat density and sharp border without F-FDG avidity on both early and delayed imaging, metabolic assessment indicates a benign pancreatic lesion such as pancreatic lipoma. And my doctor told me it is benign and just need a followed up annually with MRI.

Due to my anxiety, I went to visit 2 other hepatobiliary surgery specialists, and both said it most Likely benign, and need to be follow up annually. Although all 4 doctors recommend no surgery since it’ll be overtreatment, but than one of the 4 doctors said a very tiny white dot is seen on the cyst, which could be mural nodule. This has driven me back to the huge anxiety again. I can’t stop myself on thinking about what if it’ll became cancerous later on (Although all doctors said surgery will be totally fine if it gets bigger in a year and won’t affect my survival rate).

Please give me advice on what to do next.

Jump to this post

@loklcw. Lori @loribmt provided really good information and discussions on Mayo Clinic Connect where other members have discussed their IPMN on the pancreas. I'm hopeful that reading these and the consults you had with 4 hepatobiliary specialists will provide you some peace of mind. And Ginger @gingerw echoed what Lori wrote.

It is very frightening to get the results you did when you initially went to see your GP for slight pain. I think we all worry that when we go to the doctor for slight pain it will turn out to be something awful. In your case, it seems to be a benign condition that will be checked on very carefully on a regular basis. If it turns in to something else (and I know you're afraid it will be pancreatic cancer), the doctors will catch it in plenty of time because you will go back for regular checkups.

Do you still have the slight abdominal pain? Do you have someone you can talk to for support like a spouse, a family member or a close friend?

REPLY
@loribmt

Hi @loklcw First, take a deep breath and let it out slowly. Anxiety over test results can send us into panic mode instantly. We never want to think our body is letting us down.
At 27, the likelihood of you having pancreatic cancer is minimal. Statistically the majority of people who develop that cancer are over the age of 45, with most being well into their 60s.
Having had 4 hepatobiliary specialists review the MRI, blood test results and tell you it’s most likely benign should put you in a fairly high level of comfort that this is nothing to worry about.
With annual MRIs they’ll be able to keep an eye on this fatty cyst to make sure it doesn’t change. You may go through life with this little blemish on your pancreas without every having it change. And it puts you way ahead of the game if it does. Most pancreatic cancers are discovered secondary to other issues. If, and it’s a big IF, you have anything untoward happening there, it can be caught ahead of time and taken care of.

I found some discussions in our Connect forum with other people who have the discovery of IPMN on their pancreas. You might find some of the conversations informative as they share their experiences with the same diagnosis. One of my fellow mentors, Teresa @hopeful33250 has also had an IPMN and writes about it in this reply to @carlz in the discussion group, under 6 Non invasive IPMNs
https://connect.mayoclinic.org/comment/325595/
6 non invasive IPMN
~~
https://connect.mayoclinic.org/discussion/six-non-invasive-ipmns/
Living with ‘what ifs’ is a quality of life stealer. I think the newness of this discovery will start to fade into the background a little each day as you move forward, realizing you’re a healthy young male and have your life ahead of you to live to its fullest.

How are your original symptoms that lead you to this discovery in the first place? Have your abdominal pains subsided? Did any of the doctors feel this fatty tissue was the cause?

Jump to this post

Hi Lori,

Thank you so much for your detailed reply, it really did help me out a lot. I know it’s anxiety which driving me crazy now, which stops me from thinking logically.

It’s actually pretty reassuring that all 4 doctors had told me even IF the cyst grow bigger in future, surgery at that time can absolutely cure it and won’t affect my survival rate. I keep telling myself that it’s a benign lesion now, and I still got plenty of time to monitor and treat it, it’s just my over thinking which freaks me out and giving a panic attack everyday.

All my symptoms are not related to this cyst according to all 4 doctors, since it is too small to cause any symptoms. Beside abdominal pain (which later found out that it is actually muscle pain), I’m also experiencing a mild steatorrhea, but the doctors all said it isn’t pancreas issue, so I’m still quite lost on this.

REPLY
@gingerw

@loklcw Welcome to Mayo Clinic Connect. I hope your weekend has not been filled with the anxiety you speak of! It's pretty difficult to relax when you feel there are things out of your control, going on with your body, isn't it?

What @loribmt has mentioned, is accurate. If you are aware of a family history of cancer, specifically gastrointestinal cancers, I can understand your concern. But knowing that four hepatobiliary surgery doctors are all recommending annual MRIs should ease your mind. Usually a pancreatic cancer is found as an adjunct to other health issues being investigated, so you are definitely ahead of the curve there.

We can't take away anxiety if you choose to hold on to it, but I hope you will see that there is less reason to keep it in the forefront.
Ginger

Jump to this post

Hi Ginger,

Thank you for your reply, I’ll try to calm myself a bit now, I know I might be overreacting. What freaks me out the most is that seeing the survival rate of pancreatic cancer online (I know in my case it is still benign at the moment).

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@naturegirl5

@loklcw. Lori @loribmt provided really good information and discussions on Mayo Clinic Connect where other members have discussed their IPMN on the pancreas. I'm hopeful that reading these and the consults you had with 4 hepatobiliary specialists will provide you some peace of mind. And Ginger @gingerw echoed what Lori wrote.

It is very frightening to get the results you did when you initially went to see your GP for slight pain. I think we all worry that when we go to the doctor for slight pain it will turn out to be something awful. In your case, it seems to be a benign condition that will be checked on very carefully on a regular basis. If it turns in to something else (and I know you're afraid it will be pancreatic cancer), the doctors will catch it in plenty of time because you will go back for regular checkups.

Do you still have the slight abdominal pain? Do you have someone you can talk to for support like a spouse, a family member or a close friend?

Jump to this post

Hi Helen,

Yes you’re right, and that’s what makes me a lot calmer now, since all 4 doctors saying it could be cured if the cyst grown in the future and won’t affect my survival rate.

It’s just sometimes frustrating that I’m only 27, and will need to monitor this cyst annually in the future, this could put me into a lot of stress.

My abdominal pain has now gone and found out it is actually just some muscle pain issues… not sure is this lucky or not, I incidentally found something on my pancreas which has nothing to do with my symptoms, it gives me lots of stress about it, but good thing is it’s benign now and I will be able to be alert and monitor it before it becomes something bad.

REPLY
@loklcw

Hi Lori,

Thank you so much for your detailed reply, it really did help me out a lot. I know it’s anxiety which driving me crazy now, which stops me from thinking logically.

It’s actually pretty reassuring that all 4 doctors had told me even IF the cyst grow bigger in future, surgery at that time can absolutely cure it and won’t affect my survival rate. I keep telling myself that it’s a benign lesion now, and I still got plenty of time to monitor and treat it, it’s just my over thinking which freaks me out and giving a panic attack everyday.

All my symptoms are not related to this cyst according to all 4 doctors, since it is too small to cause any symptoms. Beside abdominal pain (which later found out that it is actually muscle pain), I’m also experiencing a mild steatorrhea, but the doctors all said it isn’t pancreas issue, so I’m still quite lost on this.

Jump to this post

Hey @loklcw, Looking for those pesky ‘what ifs’ in the future are really detrimental. Yes, the outlook online at pancreatic cancer statistics are not favorable but the odds are increasing with new treatments and research.
Most often pancreatic cancer isn’t discovered early enough for treatment.
In your case, the best news is that you don’t have cancer and with annual MRIs if there ever is anything detected it will have been caught very early in the game. So I think it should be pretty reassuring for you at this point. You may exhale now. ☺️

With your mild steatorrhea, have you discussed this with a gastroenterologist? There are a number of tests that can be run to determine if you’re having malabsorption issues in your digestive tract, Crohn's disease, chronic pancreatitis, etc.
Steatorrhea is also symptomatic of Exocrine pancreatic insufficiency. You might want to check out this article from Cleveland Clinic regarding this treatable condition. Don’t go reading too much into these articles though when they mention pancreatic cancer. You can rule that out! 😉 You’ve already been given the all-clear there.
https://my.clevelandclinic.org/health/diseases/21577-exocrine-pancreatic-insufficiency-epi
Another article on EPI from Healthline.
https://www.healthline.com/health/exocrine-pancreatic-insufficiency/signs-and-symptoms
Mayo Clinic’s main website has this information on steatorrhea
https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/identifying-diarrhea-caused-by-bile-acid-malabsorption/mac-20430098
Stress can also bring on diarrhea as well. I’m just curious, was this something new that happened since your MRI discovery?

REPLY
@loklcw

Hi all,

I’m 27M and pretty anxious about what I’ve experienced earlier. Due to a slight upper abdominal pain, I went to visit my GP and had several blood tests and MRI with contrast done. My CA19-9, CEA and pancreatic enzymes all came out normal.
CA19-9: 2.3
CEA: 1.96

But the MRI with contrast result came out saying it detected a non-enhancing lesion seen on my pancreas tail, around 0.8cm. Suggested IPMN, or other pancreatic neoplasm.

Than I went to visit 2 hepatobiliary surgery doctor, both suggest me to do a PET-CT scan. 2 days later my PET-Ct report came out:

A pancreatic tail 8mm hypodense lesion shows homogeneous fat density and sharp border without F-FDG avidity on both early and delayed imaging, metabolic assessment indicates a benign pancreatic lesion such as pancreatic lipoma. And my doctor told me it is benign and just need a followed up annually with MRI.

Due to my anxiety, I went to visit 2 other hepatobiliary surgery specialists, and both said it most Likely benign, and need to be follow up annually. Although all 4 doctors recommend no surgery since it’ll be overtreatment, but than one of the 4 doctors said a very tiny white dot is seen on the cyst, which could be mural nodule. This has driven me back to the huge anxiety again. I can’t stop myself on thinking about what if it’ll became cancerous later on (Although all doctors said surgery will be totally fine if it gets bigger in a year and won’t affect my survival rate).

Please give me advice on what to do next.

Jump to this post

Hello @loklcw

I would like to join the others in welcoming you to Mayo Clinic Connect. I can certainly feel the worry in your words and can certainly relate to that anxiety. After three surgeries for a rare form of cancer in the duodenal bulb, a CT scan for something unrelated showed cysts in the pancreas. I was certainly riding the "what-if" train and it was a rocky ride as you know.

That original CT scan led to an MRI and later a EUS and all the examining doctors said the same thing, IPMN, which is benign. Given my history of carcinoid cancer, however, follow-ups are done on regular basis. For the first few years, it was annually. However, now, after many years of no changes in the size of the cysts, I've graduated with an MRI every two years.

To say that I never worry about the possibility of pancreatic cancer would be telling an untruth. The possibility still crosses my mind. In the years when I don't have the MRI, I've asked my doctor to do blood work to check on the pancreas enzymes as well as the liver enzymes. It certainly helps to keep my mind at ease.

I really understand that when you have a propensity to worry, it can be a hard habit to break, but as @loribmt @gingerw and @naturegirl5 have suggested, do your very best to put this concern in a compartment and trust that you are getting good medical opinions and live your life. I know you are thinking, "easier said than done." So true.

Keep following up as suggested by your medical team. In the meantime, I'd like to invite another member to this discussion, @mariouk, who has also dealt with this same concern.

Are you taking any meds for the symptoms of steatorrhea?

REPLY
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