u/CallHerGee

Hey all, I don't know how to link my previous post about my mom (will try to do it in the comments), but last week after they found a mass on her pancreas and she had 10/10 pain, the hospital we went to told us we were "wasting our time" by having taken her to the ER and doing any tests. They gave us some pain medication and sent us home.

After days of advocating on the phone for her to different places who kept turning us down or scheduling appointments months out, I finally took her to a different hospital who has been FANTASTIC.

They found a blood clot in her lung that the other hospital missed, and did a CT right away on her mass, which they now think is a neuroendocrine tumor of the pancreas 3.4x2.8cm. While that isn't exactly "good news", I will absolutely take any progress towards answers and fixing her pain that I can! They will be doing a EUS for biopsy tomorrow or the next day, but since they have her on blood thinners for the clot, it's a precarious situation I guess.

But the point of the post is, we are getting answers. Thank you to everyone here who gave me advice last week when the other hospital sent us away. Edit to add that we are now at least 3-4 weeks ahead of what they would have scheduled for us. We never would be where we are now if I hadn't been given some suggestions of how to best advocate for her and her needs! Sending out prayers to everyone here.

Hi there, I'm not even sure if this is the right place to post since there's no diagnosis as of yet, so I guess delete this if it isn't correct...

While she was admitted to the hospital, they found a 2.1cm x 2.6cm x 2.6cm "solid appearing mass" at the head of my mom's pancreas. She was hospitalized as she has been having excruciating 10/10 burning nerve pain in her back flank for over a month now. They did an ultrasound, MRI, CT, and did not see anything that could be causing the pain (they did find gallstones but that is incidental). They said that they couldn't do the MRCP or endoscopic ultrasound in the hospital because their job is just to "stabilize her and then she can see outpatient". We were even told we 'wasted our time' going to ER despite her being in true 10/10 pain to the point she can't move or sleep.

They told us to follow up with GI to have a MRCP test done for her pancreatic mass ASAP, but even though they escalated it to "urgent" and sent it to the provider herself, the earliest they could get her in is a month away. I have been trying to work with her primary doctor's office to get her somewhere else sooner, but three times now they have either forgotten to do a referral or have ordered incorrect labs/scans, so they are no help at all.

I was a medical professional for a number of years when I was younger, so I understand that the system is stretched thin in regards to providers and what they can do, etc. But this seems ridiculous, that someone with a mass that they have deemed "urgent" would be brushed off like this when the pain is so intense that she physically cannot sleep or move from her bed in a sitting position.

I guess my point is, did anyone else have a long road to their diagnosis and have to jump through hoops to try and get anyone to take them seriously even after a tumor was found?

Thanks for listening, and wishing everyone here wellness.