Anyone start with pancreatic cysts that were thought to be malignant?

Posted by elisabeth007 @elisabeth007, Jun 1 4:26pm

please tell me about it and how the diagnosis was handled. Thanks

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May I ask what testing was done to find the cysts?

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Two MRIS w and w/o contrast. Second was ordered by a pancreatic oncology surgeon with a special protocol (triple phase?) Because i’ve had anesthesia complications endoscopic ultrasound has been postponed. I’m getting another MRI in a couple weeks at Mayo and will also be seeing a GI Dr at Mayo for an evaluation

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Pancreatic cancer surgeon wrote it on MRI RX. When i asked why he alleged that was the only diagnosis he knew. My ins does not generally require Pre-authorization for MRI’s. However, i don’t know if malignant neoplasms was listed to ensure insurance coverage.

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Oh gosh. I’m sure the waiting has to be terrible. Hope you do fine with the anesthesia at the endoscopy if they order that again and get some better answers.
You must’ve been having GI symptoms to get this process started. How are you feeling?

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i am not feeling particularly ill. What started the process is that i had a severe flare up of thyroid auto-immune disease and apparently developed autoimmune hepatitis as a rare reaction to Tapazole, the
most frequently used “hyperthyroid drug”. I am followed annually by a geneticist GI physician at a nearby academic teaching hospital. I have a genetic mutation that places me at heightened risk for breast, ovarian and pancreatic cancer. That Dr ordered a baseline pancreatic MRI that i had 12/6/23.

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i elect to live w uncertainty and have frequent MRI’s because i don’t want to accept my heightened risk of an anesthesiology reaction unless absolutely necessary. I don’t want to worsen my quality of life “searching for answers” I have learned to adapt to my autoimmune profile and err on the side of avoiding autoimmune reactions

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@choosejoy

Oh gosh. I’m sure the waiting has to be terrible. Hope you do fine with the anesthesia at the endoscopy if they order that again and get some better answers.
You must’ve been having GI symptoms to get this process started. How are you feeling?

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Thanks for your concern. i try to focus on positive things and stay out of fear mentality

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New patient -- I just completed a distal pancreatectomy and spleenectomy along with removal of my gall bladder. The initial diagnosis was a cyst on the tail of my pancreas which was only found on MRI following an ultrasound for my gallstones. Had my GI doctor not ordered the MRI, who knows. So, following MRI, had a CT scan with and without contrast. 5.5 cm pancreatic cyst on the tail. Completed surgery on 5/29/24. Biopsy showed one lymph node out of 23 as positive so I will need chemo. All of the tests; and my surgeon is one of the best out of Memorial Sloan Kettering in NY, he was almost 100% sure it was going to be benign or pre-cancerous. So next week I will get the appointment with the medical oncologist for chemo. Most of these cysts will come back benign or pre-cancerous, but at least I am stage 1 which is amazing.

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Thanks for sharing. Hope you heal well. my pancreatic oncology surgeon is so inclined to think my cysts are malignant that he notes my diagnosis as Malignant pancreatic neoplasms. I have a gene mutation that increases my risk for cancer so i want to handle the situation prudently. i’m
getting a second opinion later this month at the pancreatic clinic of Mayo in FL

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@elisabeth007

Thanks for sharing. Hope you heal well. my pancreatic oncology surgeon is so inclined to think my cysts are malignant that he notes my diagnosis as Malignant pancreatic neoplasms. I have a gene mutation that increases my risk for cancer so i want to handle the situation prudently. i’m
getting a second opinion later this month at the pancreatic clinic of Mayo in FL

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Which gene mutation do you have?

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