Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

@hopeful33250
Good to hear your pancreatic cyst story. Yes, once you have cancer you can’t help but worry that anything new is more cancer. Hoping my pancreatic cyst will be as harmless and inactive as yours. I’ve had several liver cysts pop up in the past couple years too so I’m hoping the MRI will get a better look at those. Thanks for sharing.

Zebra, various cancers are not the thing you want to be collecting. I bet you'd rather be collecting stamps or tea cups or something.

I merged your 2 discussions into one that is now visible in both the NETs support group as well as the Pancreatic Cancer support group. That was you benefit from input from members in both support groups but only have one discussion to follow.

What are next steps for you? Have you had the MRI?

Thank you, Colleen. I have not scheduled the MRI yet. My oncologist did say I can delay a little so I may wait half way to my next CT scans so I can see if there is any change in size. Depending on MRI results, we may just continue to monitor with scans or they may suggest a EUS. If the latter, I know I wouldn't schedule an invasive procedure until after the holidays so I'm thinking I might as well wait to do the MRI in December or January. Pros and cons because I know I'll keep thinking about it until I have it done. They are not super worried about it because a branch cyst in the pancreas head is more likely not cancer than cancer, but I've been the exception to the rule soooo many times and have had various doctors be wrong about my case so many times. It's easier to play the odds and not worry when it's not you, right? Based on my personal medical history, I know I'm more likely to fall into the exception category. You never want to hear that you're an interesting medical case or an outlier and I've heard that way too often. Thanks for asking. 🙂

Hi Californiazebra,

Earlier this year my wife had a CT scan in connection with some kidney issues. It showed "small hypodensities in the pancreas… the largest one in the body of the pancreas near midline measured 9 mm" the radiologist's report went on to say "… It could represent a small side branch duct IPMN. The radiologist said it could be more accurately characterized with an MRI & magnetic resonance cholangiopancreatography (MRI/MRCP). The MRI/MRCP found that the small nonspecific pancreatic cystic lesions within the pancreatic body were non-specific but likely reflected small side branch IPMNs which were benign. The radiologist stated such benign lesions "… can rarely undergo malignant transformation and for this reason MRI follow up as recommended in one year to ensure stability." After that report my wife's primary care physician ordered a repeat MRI/MRCP in one year and then every other year there after for a total of five years to make sure there is no growth. Below is a link to a helpful article we found on the NHI National Library of Medicine website.

I wish you the best of luck in managing your cancer.

Tom

Hi Tom,

Thank you for sharing your wife’s story. I will be having an MRI/MRCP. I’m hoping it won’t show anything of great concern and we can just follow my case with scans like your wife. Her story is encouraging. The link is also a very informative article. Thank you for sharing that as well.

Incidental findings can be so frustrating. It’s like taking your car in for an oil change and being told 5 other things need replaced.

Praying for positive outcomes for your wife as well.

@jacee780, how are you doing? Did you have the biopsy in the meantime? How did it go?

Hi Zebra,
Glad to hear you're having the MRI/MRCP type scan. Hope it comes back benign. I can certainly relate to the anxiety about incidental findings. I read that patients now have a word for it; scanxiety. My NETs were discovered when I had a CT scan for an intestinal obstruction. Then later when I had further scans for my NETs they found a significantly calcified aortic artery. Wishing you no more incidental findings!
All the best to you.
Tom

Tom, that’s frustrating about your incidental findings too. I hope both conditions were successfully treated. I remember in 2008 I went in for bronchitis. A chest X-ray led to a CT scan that showed 50+ nodules across both lungs. Surprise! NETS & DIPNECH.

I have an anechoic lesion on the pancreas body suspected to be an IPMN-side branch that has been stable in characteristics for several years. However, I have increasingly been bothered by abdominal pain and back pain with intolerance to fat. I was seen at Mayo a year ago and after an MRI was told my cyst looked benign. My local gastroenterologist has said that my EUS doesn’t indicate that the cyst could be the source of the pain. My weight has dropped about a pound a year since 2017 and I recently lost 3 lbs. this morning my fasting blood sugar was 127- usually below 100. Has anyone else had a very small cysts become malignant? I am trying to set up F//U with Mayo now.

I have no medical background, and am struggling to comprehend the mountain of papers your post inspired me to (try to) read.

The Fukuoka Guidelines https://www.endoscopy-campus.com/en/classifications/impn-fukuoka-classification-guidelines/ are commonly used in diagnosis and treatment of IPMNs. A noteworthy quote from that link says:
(Read the full link to see criteria for "Fukuoka-positive," "high risk" and "worrisome features.")

"An approach based on these guidelines has shown that the risk of overtreating “harmless” IPMNs due to unjustified surgery, and at the same time the development of malignant tumors out of apparently “harmless” IPMNs, is extremely low. A study including more than 1,100 patients with IPMNs showed that the rate of malignancy developing within 5 years in Fukuoka-negative IPMNs was less than 2%. In the presence of “worrisome features,” the carcinoma risk in unoperated IPMNs is approximately 4%, whereas in Fukuoka-positive patients, pancreatic carcinoma was demonstrated within 5 years in 49% [4].

When patients with an IPMN are being monitored, attention must always be given to the fact that pancreatic malignancies may also occur more frequently outside of and independently of the cystic lesions [5]. Surveillance should therefore always include the entire pancreas."

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Another interesting paper ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6399082/ ) notes that blood types A/B/AB are more likely than Type-O to have IPMNs, "but Type-O blood group carriers had a higher odds of having high-grade dysplasia in their IPMN. These results indicate blood group status may have different effects on the risk and progression of IPMNs."

Although general logic seems to infer that higher-grade IPMNs may be more likely to turn cancerous, the paper doesn't say that. It does say, "Factors associated with an IPMN with associated adenocarcinoma were then assessed (Table 4). By univariate analysis, age ≥ 50 years, BMI ≥ 25, multiple cysts, cyst size ≥ 2 cm, and preoperative diabetes mellitus were all associated with IPMN-associated carcinoma. When incorporated into a multivariate regression model, only BMI ≥ 25, cyst size ≥ 2 cm and diabetes mellitus were independent risk factors for IPMN-associated adenocarcinoma (Table 5)."

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This recent (2021) paper "Early screening and diagnosis strategies of pancreatic cancer: a comprehensive review" https://onlinelibrary.wiley.com/doi/10.1002/cac2.12204# is indeed pretty comprehensive. Among a plethora of more modern techniques, it discusses combining basic biomarker tests to improve sensitivity and specificity:

"In addition to CA19-9, other tumor markers, such as CEA, CA125, and CA242, are also used together to diagnose pancreatic cancer. CA19-9 seems to be associated with the highest sensitivity around 80% but has no advantages regarding specificity, which appears to be the highest for CA242, at approximately 90% [14, 15]. Notably, the sensitivity and specificity of detecting serum CA19-9, CEA, CA125, and CA242 together were 90.4% and 93.8%, clearly higher than any single marker [15]. Consequently, patients with suspected pancreatic cancer still need to be tested for at least these four tumor markers."

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This interesting paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4113008/ states:
"A recent study suggests that there may be a large window of opportunity for detection of pancreatic cancer while the disease is in its earliest and treatable stages. In this study, genomic sequencing was performed on cancer cells acquired at autopsy in seven pancreatic cancer patients.28 Based on the differential accumulation of mutations in primary and metastatic lesions, the authors estimated an average of 11.7 years elapsed from tumor initiation to overt cancer development and an average of 6.8 years elapsed between the development of overt cancer and the development of metastatic disease."

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So, I would say it's good that you're getting the follow-ups and hope you continue doing so with vigilance. Even if the red flags aren't waving yet, the yellow caution flags seem to be out.

Questions related to your risk would be:
1) Familial history of any cancers, particularly pancreatic, in 1st or 2nd degree relatives?
2) Any known mutations (BRCA, PALB2, ATM) in your family genetics? (Get tested if you haven't!)
3) Are you getting your CA19-9 tested often enough to know YOUR normal level and spot a trend if it changes?
4) Can you request a liquid biopsy? (DNA-based blood test)
5) How big is your anechoic lesion / very small cyst?

Your weight loss, blood sugar, and fat intolerance are all legitimate concerns (and symptoms I experienced before my PDAC diagnosis), but I have no idea to what degree.