09 Oct Patient Experience: 15 Days, No Diagnosis
Tuesday afternoon the physician performing my fathers EUS and biopsy came out to talk to us briefly after the procedure.
He clearly stated that he took 8 specimens, the pathologist would not give a preliminary read, but would have results back to us in 24 hours. That was 1330 on Tuesday. So in theory, by 1330 on Wednesday, we should have results.
I called my mother at 1700 hours this evening, wednesday, and much to my dismay, no one had called my parents with results. I told my mother she needed to call the GI Surgeons office.
Mother sent me a message letting me know that she had to leave a voicemail for the GI Surgeon because they were gone for the day. I told her to call the primary care physician. It is the same healthcare system, they are all on Epic, and he should be able to get her the results.
By the time my mother went to call they were gone for the day as well.
To this point all of the physicians have said that if it is pancreatic cancer there is no need to rush, blah blah blah.
However, they have not once taken into consideration if it is metastatic pancreatic cancer. If it is, time is of the essence. The indication from the physicians and the information I gained leads towards the direction that it may be just that, metastatic.
I may not be a physician, but I have lived the cancer world long enough to impact the lives of close to 500,000 patients. I know when things need to be done now, not tomorrow, or when it is convenient to you.
So tomorrow first thing in the morning I will be calling to get the results. If it is confined, we can move on, get a PET, and schedule surgery if all the stars align.
If it is metastatic disease, I believe my father needs to seek an additional opinion at one of the local Academic Medical Centers. I am not sure the community setting sees enough pancreatic cancer to offer multidisciplinary care to appropriately lay out all of his options. In addition, I want to lay out the expectation that we need to minimize my fathers pain as best as possible. My fathers wishes need to be heard and carried out. Little pain, high quality of life, transition from active treatment to active palliation and hospice at appropriate times.
My role is to be the voice of my father and to articulate his wishes to ensure they are carried out. If the medical team cannot connect the dots, then I will have to do that for them.
As a healthcare professional you want to have all of the answers so you can speak with expertise. As a patient all you want is to be part of the conversation. This is not a document, but a chapter in the story of someone’s life. As healthcare professionals we need to remember that we cannot write this story for someone else. We can collaborate, share ideas, lend opinions, provide advice, and we can hope to coauthor this specific chapter….but at the end of the day the pencil needs to picked up and used by the patient.
After all, it is there story to tell.
15 days, and not sure which direction this story will take. Maybe I will tomorrow?
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM
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