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I am 75 and have carcinoid tumors NET in lungs
Neuroendocrine Tumors (NETs) | Last Active: 4 hours ago | Replies (135)Comment receiving replies
@tomrennie I’ve had these tumors show up on scans for the last 11 years and been misdiagnosed until a radiologist at Flagstaff Medical Center alerted my ER Dr of his suspicions. I know first hand that a good radiologist is key to a good diagnosis, and yes we’re only human so mistakes are inevitable. I love that Mayo is fantastic at quickly uploading your test results to the portal, unfortunately I had my erroneous results in my head for 2 weeks until I got clarification from my Dr. I had already gone back and compared it to my prior CT reports and was pretty worried that I had developed a 27mm tumor in 3 months! Occasionally you get information that you’re really not prepared to deal with, biopsy results, lab work etc and you need to grin and bear it until your next appointment.
Replies to "@tomrennie I’ve had these tumors show up on scans for the last 11 years and been..."
@azrosegold I understand. I had a typo on a scan report. I had a liver lesion presented at 8.6cm and not 5.6cm on the report. Fortunately, the oncologist corrected everything the next day at my appointment. Waiting two weeks is a long time. Though easier said than done, I try to not get too up or down until I meet the ologist that ordered the test. If there is more than a day between results and meeting with the ologist, I will send a message on the portal with my concerns. I have received responses back to alleviate my fears.
@azrosegoldjust wondering.... Flagstaff in Florida? I was told in July after a bone scan that the tumor in my chest was growing. I'm sure my mouth fell to the floor. My heart did. I was never told I even had a tumor to be worried about. Now I'M wondering how long it was there. Then on my post-op visit, the surgeon told me I had 3 more. He said not to worry they were small. That was not the point. I wanted to know after having a PET scan with no more tumors found, how they suddenly appeared 2 months later? Just makes you wonder. Then I switched surgeons and was told about DIPNECH, and the shots for it. I am supposing the first surgeon did not know about either. So important to go to a specialist for Carcinoid cancer. Just because they are a "Cancer surgeon" does not mean they are familiar with the protocol for NETs.
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@azrosegold
Sorry to hear that. I know how stressful that can be. I recently had a radiologist make a typo on an MRI MRCP report for my pancreas, he put cm instead of mm. I even asked the NP if that was a typo because cm meant pancreatic cancer (huge) and mm was normal. She kept on with the story even though the GI team knew immediately it didn’t make sense. So I thought I was dying for 6 weeks until the GI told me it was a typo right before the endoscopic ultrasound that had completely normal results. Not okay to let me believe that for so long to cover an error.