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Pancreatic hypodensity on CT

Posted by pattyclaire @pattyclaire, May 8, 2023

I’m a 57 yr old woman with a history of GERD that led to a gastric bypass 2 yrs ago as a cure for symptoms and esophageal erosion. I went to the ER for diarrhea and rectal bleeding and they found a 1cm hypodensity on the head of my pancreas, a few tiny ones on my liver and 1 on my spleen that were too small to characterize. Also, mild biliary duct dilatation. I have had unintentional weight loss, random vomiting, and pretty constant degrees of nausea for over 6 months now. I am convinced I have pancreatic cancer with mets to my liver. I just don’t see how this many things can be just nothing. I have felt generally unwell for nearly a year now. My PCP ordered an MRI and a referral to GI this week. I want to make sure I am getting the right/best tests and treatment. I am a nurse and I know how important the right course of action is for the best possible outcome. I appreciate any advice or guidance anyone can give.

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gardenlady1116 | @gardenlady1116 | May 9, 2023

Sounds like you are on the right track with the GI consult. See what comes of it. If you are not getting answers, a pancreatic center of excellence might be a good resource for further evaluation. Best wishes on your journey to find answers.

REPLY
1 reply
pattyclaire | @pattyclaire | May 9, 2023
In reply to @gardenlady1116 "Sounds like you are on the right track with the GI consult. See what comes of..." + (show)
@gardenlady1116

Sounds like you are on the right track with the GI consult. See what comes of it. If you are not getting answers, a pancreatic center of excellence might be a good resource for further evaluation. Best wishes on your journey to find answers.

Jump to this post

@gardenlady1116 Thank you! There is a center of excellence about an hour from me. I will definitely pursue that, thank you for letting me know!

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jenray | @jenray | May 10, 2023

Yes! Go to a Center of Excellence! My aunt was recently diagnosed. We are learning the hard way that everything would have been faster/easier/better if we had started with people who knew their way around a pancreas first. She had a botched biopsy that has caused all kinds of issues, not the least of which was that it has delayed the start of her chemo.

And not all Centers of Excellence are equal. Some are difficult to work with. Some are delightful. Some will make you jump through all kinds of hoops before allowing you to make an appointment to with a doctor. Some will just fit you in ASAP. Some have multidisciplinary clinics where you can get a lot of eyes on your case in a very short period of time.

REPLY
1 reply
pattyclaire | @pattyclaire | May 11, 2023
In reply to @jenray "Yes! Go to a Center of Excellence! My aunt was recently diagnosed. We are learning the..." + (show)
@jenray

Yes! Go to a Center of Excellence! My aunt was recently diagnosed. We are learning the hard way that everything would have been faster/easier/better if we had started with people who knew their way around a pancreas first. She had a botched biopsy that has caused all kinds of issues, not the least of which was that it has delayed the start of her chemo.

And not all Centers of Excellence are equal. Some are difficult to work with. Some are delightful. Some will make you jump through all kinds of hoops before allowing you to make an appointment to with a doctor. Some will just fit you in ASAP. Some have multidisciplinary clinics where you can get a lot of eyes on your case in a very short period of time.

Jump to this post

So happy y’all found a good one! My PCP ordered an MRI and we are waiting for results. The GI doc today completely dismissed it because it is only 1 cm. He wants me to do another scan in a year. He said if it were the same CT report but it was 2 cm instead of 1 cm he would recommend further investigation. That doesn’t make sense to me. Hopefully the MRI will tell us if it’s a cyst or mass or whatever? Do you think the center for excellence will even see me if it hasn’t been diagnosed as cancer? Maybe it is nothing and I am over-reacting? I just don’t know. How was your MRI botched, if you don’t mind my asking?

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jenray | @jenray | May 11, 2023

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.

REPLY
1 reply
pattyclaire | @pattyclaire | May 11, 2023
In reply to @jenray "The biopsy was botched. They couldn't get a sample. And when they tried, they aggravated her..." + (show)
@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.

Jump to this post

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!

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