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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@yliddy

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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That’s encouraging that surgery was done. My husband had a mass on pancreas 1-1/2 yrs ago but we were told to leave it and monitor by mri. 9 months after last MRI mass in pancreas has grown to 6CM .Also spleen ,& spots on liver they say 99.9% cancer
Had a EUS biopsy 2 weeks ago. Came back not usable. Having a liver biopsy done this Friday. Finally convinced to do blood work 19/9 tumour markers are 120,000! We seem to be going in big circles. We have appointment with oncology at cancer clinic next week I have contacted myself a Hepato/Pancreato/ Biliary surgery group as we want to know if surgery is possible with chemo. The group is triaging his case Our GP did not want to refer but I insisted GP says treat with chemo and if we can’t get a biopsy pallitive Does this seem right?

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I’m so sorry. Yes the surgeon at Sloan was convinced it was benign or precancerous. Didn’t even bother with biopsy which I was fine with. I’m waiting now for the medical oncologist to call. I just want to get chemo started asap I’m not sure where your husband is treating but have you received a second opinion?

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I would definitely get the second opinion. I’m waiting on my CEA19 blood testing as we didn’t get that previously. Is your husband in pain? And where is the cyst, tail?

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i have gotten second opinion of a very respected neurosurgeon who has removed 7000 brain tumors.

At first, he recommended surgery immediately. However, once he understood my particular situation he agreed to 6 month wait and doing another MRI.

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@elisabeth007

i have gotten second opinion of a very respected neurosurgeon who has removed 7000 brain tumors.

At first, he recommended surgery immediately. However, once he understood my particular situation he agreed to 6 month wait and doing another MRI.

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excuse me. i am confused and overwhelmed. i suddenly have both a meningioma (tumor ON brain) and pancreatic cysts with a diagnosis of local pancreatic oncology surgeon: “malignant pancreatic neoplasms”. I am getting a second opinion at the Mayo jacksonville pancreatic clinic in a few weeks

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@yliddy

I would definitely get the second opinion. I’m waiting on my CEA19 blood testing as we didn’t get that previously. Is your husband in pain? And where is the cyst, tail?

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Not pain just uncomfortable bloating Yes it’s in the tail. It’s just so hard to navigate through medical here in Canada Trying everything

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i too have uncomfortable bloating and lots of flatulence. Even with great health insurance in the states, it’s overwhelming to navigate

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@yliddy

I’m so sorry. Yes the surgeon at Sloan was convinced it was benign or precancerous. Didn’t even bother with biopsy which I was fine with. I’m waiting now for the medical oncologist to call. I just want to get chemo started asap I’m not sure where your husband is treating but have you received a second opinion?

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i’m surprised that sloan kettering didn’t have a protocol requiring a biopsy. wishing you all the best!

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@shelleyderish

That’s encouraging that surgery was done. My husband had a mass on pancreas 1-1/2 yrs ago but we were told to leave it and monitor by mri. 9 months after last MRI mass in pancreas has grown to 6CM .Also spleen ,& spots on liver they say 99.9% cancer
Had a EUS biopsy 2 weeks ago. Came back not usable. Having a liver biopsy done this Friday. Finally convinced to do blood work 19/9 tumour markers are 120,000! We seem to be going in big circles. We have appointment with oncology at cancer clinic next week I have contacted myself a Hepato/Pancreato/ Biliary surgery group as we want to know if surgery is possible with chemo. The group is triaging his case Our GP did not want to refer but I insisted GP says treat with chemo and if we can’t get a biopsy pallitive Does this seem right?

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i somehow don’t think the GP has the expertise to be making such a serious decision that is usually based upon highly specialized expertise. And then there is the question is the ins company willing to cover the cost of chemo w/o a biopsy?

You might want to know

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@elisabeth007

i’m surprised that sloan kettering didn’t have a protocol requiring a biopsy. wishing you all the best!

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The surgeon felt a biopsy wouldn’t dissuade either way, it was coming out. Honestly it all pointed to a precancerous cyst. Sometimes this happens. I have nothing but respect for my surgeon.

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