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Pancreas Cancer

MIL was posted 02/25/2019 11:44 pm by Anonymous
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Sun downing doesn't last.....all day. This doc is wrong.

Can you call her primary care doctor or her Oncologist to come see her? Do you know them at all and do they know her well enough that they can appreciate her changes?

This surgeon sounds ..... short-sighted at best, and dangerous at worst.

Can you try talking to ANY other Doctor that comes to see her and tell them your concerns about her behavioral changes to see if they are more responsive? Surgeons will sometimes listen to other doctors! What does the GI say when he comes to see her, or is he there so rarely that he doesn't want to get involved? Ask the GI Doctor if there are any abnormal blood tests etc... that could explain why she is so apathetic and confused?

She doesn't have PSP. That is a chronic dementia type disorder with some symptoms of Parkinson's disease and other issues. It evolves over years....not during a weeks/months post-operative stay. I would not try to self diagnose her with rare disorders as this will make the surgeon disregard you even more.

I would ask to speak to the patient advocate or omsbudsperson. Every hospital has one. Be very calm, and very succinct. But be firm. Tell them that you understand that the surgery was serious, the recovery very hard, and the cancer scary, but there has been no reasonable assessment why she is delirious all day! Tell them you are very concerned about her quality of life, which is not good. Keep using that phrase....quality of life...that should make them sit up.

And as a last try I would ask for the Palliatve care team to come see her. They will listen to you. Tell them that she has not given up hope on treatment, but that you would appreciate help in improving her quality of life. Why is she so confused? Can we make sure that someone who is an expert in this comes to see her so that we aren't missing anything? it could be anything from depression to metabolic abnormalities to low grade seizures to etc.....

I hate to ask this, but are you female? So the MIL is you husband's mother? Where is your husband? I am a female and even though I have a lot of medical knowledge, male doctors especially ignore/disrespect me. Sometimes they will respond better to a different (male) voice. Sad, but true.

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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
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