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Pancreatic hypodensity on CT

Pancreatic Cancer | Last Active: May 11, 2023 | Replies (6)

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@jenray

The biopsy was botched. They couldn't get a sample. And when they tried, they aggravated her pancreas so much that she wound up with inflammation, blockage, and jaundice. Her bilirubin, which had been normal, shot up. And then they had to re-aggravate everything again by doing a second biopsy nd installing a drain.

Anyway, the requirements for the Center of Excellent really depend on the Center of Excellence. They all have different standards (and some of them have different standards on different days).

So I put in calls to MD Anderson, Columbia Presbyterian, Johns Hopkins, Memorial Sloan Kettering, Hackensack Meridian, and University of Chicago (and this is based on where my aunt has support systems).

Columbia Presbyterian was the absolute best. They bent over backwards to get me a fast appointment. They were happy to have whatever paperwork I had. They required nothing. And they were just as nice in person. In fact, that's where my aunt has decided to get treatment.

Memorial Sloan Kettering and Johns Hopkins wanted some paperwork first.
Hackensack Meridian and U of Chicago seemed really easy to work with, but I wound up not pursuing them (for reasons that had nothing to do with them).

MD Anderson was very difficult to navigate. Every time I thought I'd provided them with everything they needed, they asked for something new. The last straw for me was when they said they'd need to see pathology slides before I could make an appointment. I needed the pathology slides elsewhere, so I didn't send them. And then they called and said they didn't need the pathology slides. By that point, I was feeling like they were simply too much trouble and that we were lucky enough to have other good options.

But I'm going to also suggest you look into pancreatic cyst clinics. I don't know where you are located, but I know that Columbia, Mayo, U of Chicago, Johns Hopkins, and a number of other places have programs that are built around deciding if what you have in your pancreas is worth worrying about or not. And if you do want a biopsy, most of these places will do a biopsy for you as well.

But the pancreas is a weird little organ. It really requires a specialist.

Anyway, sending you all the love. I hope what you have turns out to be nothing.

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Replies to "The biopsy was botched. They couldn't get a sample. And when they tried, they aggravated her..."

Thank you so much for sharing all of that, it is SO helpful!!! I hope it turns out to be nothing also but I feel like I have to keep pushing and advocate for myself o find out what it is. Thanks again for the support!