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Neuroendocrine Tumors (NETs) | Last Active: 20 hours ago | Replies (14)
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@gangcarotid1 my primary is in my pancreas and spread primarily to my liver. I also have it in my bones mostly in the pelvic area, but it also has appeared from my tibia to my skull including my femur, hip, spine, and ribs. My original diagnosis in 8/22 included all of the above. Subsequent scans show that the cancer stays in my pancreas, liver, and pelvic bones. It comes and goes in my bones elsewhere in my body. How have you been doing since your surgery?
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@tomrennie
Just returned from my checkup at Mayo Rochester. Pretty good news. They could find no sign of what they'd suspected as a frontal skull (inner table) meningioma. And the paraganglioma i had removed from my carotid artery in July was benign, shows no signs of metastasis, and because it has never secreted any hormones, I don't need to return for checkups at Neurosurgery. I do have my vagus nerve (the head and neck surgeon who was part of the carotid tumor team called it The Brat) said it showed as undamaged after the operation, but now I've developed hoarseness, throat pain on both sides of my neck, and an intermittent piercing ear pain, which they are blaming on The Brat and said it could take as long as a year to resolve. With the perceived globus sensation im having (has felt like they misplaced a wad of gauze in there during surgery) they did a scoping of my throat and looked WAY into my ear, which all look good.
They asked me to send an update thru the MyChart portal in 8 wks as to how the symptoms are by then.
I also had CTs of chest, abdomen, pelvis; had 2 malignant tumors removed from left kidney in Oct last yr; 3 mos later they found a nodule on a lung. At 6 mos all was unchanged, no cancer recurrence and lung nodule unchanged. And labs have continued to be excellent (cuz I'm eating for my labs) so I am on an every 6 mo check w the kidneys instead of every 3. The right kidney has a 1.3 cm cyst on it, but it is looking more solid and suspicious for neoplasm. With no pain and excellent labs they still said April for next check. So, am happy.
And you?