Dilation on pancreas- what should have been done?

I agree. This seems wrong! I have been bad-amazed at how passive medical providers can be in the face of such an aggressive cancer.

I couldn't tell you if it meets the legal criteria for malpractice, but in 20/20 hindsight, I think we all know the answers are "Yes, they definitely could have done more," and "Yes, they probably should have done more."

Did they also do a biopsy during the EUS, and find no cancerous tissue? That might be one reason they didn't dig deeper. Another might be if you didn't have a family history with cancers (especially pancreatic or related) or know of any mutations correlated with an increased risk of cancer. They do have different recommended standards of investigation for high-risk patients versus normal-risk patients, and it's possible they should have included your mom in the high-risk category but didn't know it.

In my case, they were "on it" a little quicker because MRI had already shown a mass returning where the previous cancer (pancreas head) had been removed. Despite taking 4 tissue samples during the EUS, they found no malignant cells, concluded it was likely chronic pancreatitis worth following up on via more blood tests and MRI in 6 weeks. That 6 week delay was all it took to discover it was not only a cancer recurrence but had also already metastasized.

So, my lesson learned regarding pancreas issues of any sort is to not mess around, don't waste time, get to a pancreatic center of excellence as soon as possible, push for second opinions and every reasonable test under the sun so you have data from different sources to help support or exclude a conclusion.

For everyone, __while__ you're healthy:

1) Know your risk! Check for family history of blood relatives with any type of cancer, not just pancreatic. Some cancers run in the family. There are similar or identical triggers for different types of cancer (e.g., my grandmother had breast cancer, and we later learned that my father and I both had an inherited ATM gene mutation, possibly from grandma, which increased our risk of pancreatic cancer.) Proactive doctors will typically start screening patients for that type of cancer when you're 5-10 years younger than the age at which your blood relative developed cancer.

2) Know your risk! Get a germline blood test like Invitae to see if there are any mutations you inherited from ancestors. Reports from tests like this usually break down what types of cancer(s) you're more susceptible to based on the mutation(s) detected. This knowledge can also help steer your treatment if you are later diagnosed with a cancer, and having the result ahead of time can save 2-3 weeks of waiting for the data.

For pancreas concerns in general (especially people with a family history):

3) Ask your primary care doc to order CEA and CA19-9 tests at every yearly physical. Some don't like to do this if there are no symptoms, and others say the data is too unreliable to use as a diagnosis. BUT... if you know your normal values over the course of several years, it's easy to spot when a result is abnormal FOR YOU. Those tests are very cheap ($25 each at the labs I use), so there's very little reason to not do them at least yearly, and especially at any medical visit (ER/Urgent Care) where your pancreas might be related to the reason for the visit.

4) Consider asking for other pancreas-related tests at your yearly physical: Amylase, Lipase, C-Peptide, and A1C are also "decent" indicators of your overall pancreas function. Again, not necessarily conclusive diagnostic tools for a pancreas disorder, but knowing your normal values helps establish a trend and identify abnormal deviations that should be looked into further. A1C is a marker of diabetes in particular, and researchers are discovering more correlations between late-onset diabetes and other pancreas disease like cancer. In my case, they were both discovered together. So... know your normals!

5) Consider a DNA-based liquid biopsy test like the Galleri test from Grail if you can afford it. It's about $1000 self-pay, not covered by insurance, not FDA approved, and not always be sensitive enough to detect cancer early. It is known to produce some false negatives (as it did with my pancreatic cancer recurrence), and more rarely false positives. But you can have the test done with a prescription at your request after consulting with one of Grail's specialists by phone. It could be done as part of your yearly checkup, or however often you want to pay for it, but if you're having any issue that could even remotely be suspicious for cancer, I would do it. Don't assume a negative means you don't have cancer (unless other data also supports it), but a positive (false or real) supports your case in asking docs to investigate further. This can help speed things along, especially getting into a specialist.

When there's a real and pressing issue:

6) Ask the docs for more supporting data. Don't just let them dismiss you based on one test plus their intuition and broad population statistics. Like with my case and the false-negative EUS biopsy... Be a very persistent self advocate for the other blood tests (CA19-9, CEA, Guardant 360, amylase, lipase, A1C, C-peptide, full liver panel, etc.)

7) Don't trust a simple external abdominal ultrasound. My first symptoms were abnormal liver enzymes, so my PCP ordered an abdominal ultrasound. Nothing stuck out as glaringly wrong other than some fatty liver, but the pancreas is not well viewed in this type of ultrasound. My liver enzymes were the result of the main pancreatic duct being blocked by the original tumor. It took several months before the other symptoms (weight loss, urine & stool changes, finally jaundice and itching) were obvious enough to order the MRI which spotted my suspicious mass. It was just a general abdominal MRI, not a pancreas-specific MRCP, but it was enough to justify the first EUS/ERCP/biopsy which officially confirmed the original tumor.

Basically: ask them to assume the worst and rule it out, rather than watchful waiting or "take two aspiring and call me in the morning." Pancreatic cancer spreads too fast and is too hard to treat once it has spread. There is really no time or excuse to push it off.

I will preface this by saying I'm not any kind of medical or legal professional, just a pancan patient.

This is an interesting discussion because of what happened to my brother back in 2006. He had always been healthy and was a competitive amateur ice dancer, but at the beginning of the year he developed a backache. It got worse and worse, to the point that he and his fiancee were digging for information and possibilities to figure out what was wrong. He even underwent some sort of procedure on his stomach, thinking that was the issue, but it didn't solve the problem. He got to the point where he was in such pain that he was labeled as drug-seeking, and nobody gave him anything. He didn't get any help until suddenly the cancer metastasized into his testicles, grossly enlarging them. By then, it was too late, and he died 3 1/2 months later. In retrospect, I figure he had the ATM mutation, which I have as well. Anyway, I have always wondered whether his wife (they married before his death) ever pursued a malpractice case. She never said, and I've never asked, but it seems like his case would have been a candidate for it.

Re the OP's situation, the questions for me are whether a biopsy was done during the EUS and why no bloodwork was ever pulled. In my case, the bloodwork came back elevated, which triggered the EUS, where we got the diagnosis. Tumor markers typically aren't used as definitive diagnostic tools, but abnormal findings can spark further investigation. There are some lawyers who are also MDs or other medical professionals and who do personal injury work, and it may be that a consult with one of them would be helpful. That wouldn't restore the mom's health, of course, but it could help answer the questions you raise.

@dregan828, how is your mom doing? What treatment is being offered? How are you doing?