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Anyone have/had BD-IPMN?
CT showed it as a hypodensity then MRCP showed it is a 1 cm BD-IPMN. I had to push for the MRI/MRCP because the gastroenterologist completely dismissed it as “nothing” and wanted to follow up with “another CT in a year” even though my symptoms are abd pain, nausea, and weight loss. So now MRCP shows it is a IPMN. I was referred to a different GI doc but I am afraid he will also not take it seriously due to it being small, only 1 cm. In my gut I believe I have PC. I just want a GI doc to take it seriously and get the diagnosis. Has anyone had a IPMN that was benign or malignant on biopsy? Also, can’t 1 cm still be PC? I imagine it is unusual to catch it so small but shouldn’t we still be aggressive for diagnosis even though it is < 2 cm? These docs make me feel like I’m over-reacting and it is so frustrating. I know I won’t be satisfied until I have it biopsied. Am I over-reacting?
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Hello,
Yes, I was diagnosed with an 8mm possible IPMN in the uncinate process a couple of months ago without ductal dilation or concerning features from the CT scan. I am having an MRCP in July to see where things are at.
I am concerned because I have so many GI issues, but everything I read, and the GI doc thinks my GI symptoms and IPMN are not related. I guess I'm also worried because I had 2 abdominal CT scans about 16 months ago and they didn't see an IPMN. It said my pancreas was normal. This makes me think it is growing quickly. I also read so much conflicting information online about IPMN's. Some say it's a 30% chance a side branch will turn into cancer in my life and other studies say my risk is 1-2%. It's hard to know what to believe or how to prepare for this. At 54, I wonder if I should stop putting money into my retirement.
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1 Reaction@tls, thinking of you as you recover from surgery.
@craigjulian, have you considered getting a second opinion? How are you doing?
Hi,
Yes, I've had 3 opinions, and all think my IPMN is a very low risk for developing into cancer and my GI symptoms are not related to the IPMN.
So, I guess I will go with what the doctors are saying and live with the GI issues.
I have had all kinds of imaging, blood work, EGD, colonoscopy, stool, and all are normal except this IPMN, and I do have hepatic steatosis- fatty liver- which I had a liver fiber scan and I'm stage 1 liver fibrosis. Again, nothing that would cause my GI symptoms.
I guess I have functional dyspepsia- IBS???
I've decided to start mental health therapy just to deal with my symptoms since nothing more can be done, and I don't have any official diagnosis.
I'm just kind of done.
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1 ReactionI have a 1cm BD-IPMN. Just saw a doctor at Mayo who tried to reassure me that only 2% will become malignant. Not consistent with what I've read, but he has ordered an EUS ( my 2nd) and will do another MRI in one year. I would have surgery tomorrow if they would operate, but the guidelines suggest watch and wait. I won't ever be totally comfortable with this approach.
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1 ReactionI, too, am in surveillance now a year into it with having one EUS and three images, MRICP. There are 2 IPMN largest 1.2cm. I found them when had a CT with horrible stomach issues, seems I’m told not related as well. We continued investigating, and did all the testing for gluten, PEI, fecal, blood, and nothing stood out. Booked a nutritionist and did the FODMAP diet. Seems I’m sensitive to dairy now. Issues resolved by taking nutritional supplements, eating and taking probiotics never eating past 6pm (GERD), and no onions, garlic and intermittent 14-16 hours fasting. My doctor thinks it all happened from antibiotics. I’m totally fine now. I just have this horrible scanxiety to deal with as my MRI is due now in a year after initial ones 6mos apart. They seem to be stable. I also went for second opinion to a pancreatic gastro at Mayo in Rochester. Awesome experience! He assured me a low probability of cancer but have to monitor and know the signs of worrisome features. I sent my scan to him for second reviews too.
I’m on with my life now and walking, traveling and just saying a prayer of thanks as I see how fortunate I am to have found it early and not late. I see this as a blessing. I guess that’s my coping skill. Know that you’re not alone!🙏
PS I did lose 10 pounds and kept it off during all this so that was good!
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4 ReactionsI got the same reassurance from my GI doctor at NW in Chicago- don't worry about this, it's a very small chance this will ever turn into cancer.
However, all the stats, studies, and information I read online say my risk is a lot higher than 2% in my lifetime. I have read many studies that show a much higher risk. SO, I don't know who to believe or trust.
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1 ReactionI agree. There is a ton of solid medical literature that refutes this 2% chance. It's a lot higher.
Add me to this category as well…June 2023 they found a cyst on my pancreas. Mayo Rochester / Jacksonville have been monitoring mine with MRI Contract scans every 6 months (now every 1 year). Currently I am asymptomatic.
Both my Mayo team and 2 PCPs say the same,..that the majority do not turn cancerous. At my FIRST Mayo visit, the doctor knew I was
nervous and worried,…he put his hand on my knee and looked me in the eye and said, “Mike, don’t worry, you’re at Mayo”…
That went along way!…
Yes I have the same scanxiety each time. I daily say the ‘Surrender Prayer’ (you can find with an Internet search) to remind me that Jesus will take care of everything and not to worry. He loves you and whatever the outcome it is for your best. It helps knowing Gods will is in control.
My prayers and thoughts are with you. Please do the same.
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