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DiscussionAnyone have a small pancreatic IPMN cyst that turned out to be cancer?
Neuroendocrine Tumors (NETs) | Last Active: Nov 27, 2023 | Replies (24)Comment receiving replies
Replies to "I have an anechoic lesion on the pancreas body suspected to be an IPMN-side branch that..."
CBD-6.5 mm
My paternal uncle died at age 75 from pancreatic cancer( I don’t have details). I am 75. I am not aware of any familial mutations, but I will look into testing. I have ordered the Ca 19-9 personally and
the most recent was normal. Another person suggested doing the Invitae Germline DNA which I think is a liquid DNA and I plan to do this myself if Dr’s don’t order. I was at Mayo a year ago and an MRCP was done. I was advised it had no irregular features and continued to be small and that they didn’t consider it to be potentially malignant. My gastroenterologist has ordered an MRCP, HgA1C, CA19-9 and the usual panel which will be done this week. My stomach has been ruled out as the etiology of my symptoms. I am a retired dietitian and have been limiting my fat for 9 months and have begun using some enzymes in August. My symptoms have continued to increase anyway with increasing back pain. I will have to continue to be proactive considering the discrepancy between my physical symptoms and clinical presentation. I apologize if this is too much information. Early detection is so important but a fleeting option it seems. Sending strength, determination, and healing your way as you manage your PDAC🙏. If you are willing to say, are you a patient at Mayo? I saw Dr. Levy at Mayo who unfortunately died several months after I was there in 10/22.
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.