PNET on tail of pancreas with numerous bilobar hepatic metastases
After eight years (yes, eight years/ ten doctors) of chasing ULQ abdominal and back pain, I recently received a diagnosis of an ill-defined, well differentiated, low-grade 3.1 cm neuroendocrine pancreatic tail mass with multiple (20+) sub centimeter liver metastases. I am totally in shock as I have been treated for years for every imaginable ailment you could imagine. Perfect blood results, just a healthy, active 67 yr. old woman with chronic intermittent back and abdominal pain. Several splenic arterial aneurysms (1 large partially thrombosed and 3 small calcified)) were discovered four years ago and coiled. Removing the spleen not suggested at the time. Although I had high hopes, the aneurysms seemed to not be the source of the pain and indeed the pain continued and actually became worse and more frequent. The metallic coils in my spleen obscure that region of the hilum in all scans plus the large amount of necrotic spleen and lymph nodes in that area only added to my anxiety but I was reassured this was normal after an aneurysm. We continued going down rabbit trails chasing IBS, splenic flexure syndrome and even slipping rib syndrome.
Now my diagnosis is that I've probably had this PNET for YEARS, but we are going to watch and wait and see how fast it's growing. I have been told surgery is not an option - I believe due to the metastases in the liver I have recently started octreotide bi-weekly in hopes it will help control any further progression and possibly reduce the tumor. Abdominal pain and swelling with never-ending dull back pain are really my only symptoms. I have been offered nerve blocks.
I'm at my wit's end because, of course, I now trust no one- including myself- to make the best decision for my future care. I am under the care of a NET specialist however it seems there are many different approaches and since I'm totally distrustful from past experience, does anyone have experience with obtaining second and third opinions? Has anyone changed doctors/standard of care after seeing a second specialist?
The more I educate myself, the more confused I become. Any suggestions?
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Thank you. I will. 💜💜