Benign or Malignant IPMN? What to do next?

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.

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?

@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

@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?

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.

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.

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?

This post has given me some hope. An 8mm dilated duct was found in to a CT scan for a kidney stone in 2013 but I was never told. Seen again, when I was told, in June 2022 after a bout if diverticulitis. Consulting physicians in 2022 felt it was a benign condition as I had had it for 9 years. Decided to see a surgical oncologist to be sure. I have an IPMN at the head of the pancreas. Sought 2 second opinions, one said consider a prophylactic Whipple, the other said not necessarily. Right now I am sticking with bi-annual MRCP's and ERCP's where biopsies have been normal. In good health otherwise. Still hoping to find statistics on those followed with IPMN'S. And obviously not everyone is the same.

I had an IPMN in the tail of the pancreas found in summer of 2021. It was 2 cm. The EUS determined it was benign. So it surveilled again in June 2022. It was 2.1 cm and the main duct was dilated. I had a distal pancreatectomy at the time, and there was cancer found in the resected tissue. But no spread. I was stage 1b. I had 12 rounds of Folferinox and CT scan showed a spot on my liver not previously noticed. Looks like cancer again. Biopsy in a couple of days. CA 9-19 spiked to 650. Doctor had hoped that Folferinox would cure, but now the hope is to control. Like you say, everyone is different and I don't know if any of my experience is helpful, but this form of cancer seems particularly sneaky and hard to stop, even in a case like mine where it started out optimistic. Wish you the best.