... removed all at one time. My question is: with several biopsys that confirmed my diagnosis wouldn't the better resolution of a CT scan be a better way to watch for tumor growth or change?
I am sure that this is not the first patient your Oncologist has treated for this problem. On this one you need to trust your doctor otherwise you need to change doctors now.
I am sure if you talk to him/her about your course of treatment you will feel much better.
May you get well soon.
A carcinoid tumor has a different "chemical uptake" than most tumors - it does not produce Glucose as one example - hence most CT scans, conventional methods of imaging don't work. The PET CAN Octreoscan has a different isotype (chemical ingredeient that "makes the Carcinoid glow") and it shows up the best. It is considered the "gold standard" in Carcinoid testing. I'm sure you know from having this disease it's extremely rare and has all sorts of "quirks" about it. I have had it for 10+ years. However, I do have 2 spots in my hilar region of my bronchial tubes - coinciendentally, in that region a CT Scan actually shows the tumors the best. I would find an expert to go to - go to Carcinoid.org, find your state and they list the Drs who are "experts" in this odd neuro-endocrine disease. Most Onco's say "We read about them in school, but we've never seen one" NOT there fault - there are so few of us.
We are considered an "orphan disease". An expert is mandatory for this condition - can't push it enough on you. I've spent 10+ years playing with this disease - go to the top! Any questions, please feel free to email me. I'd start with the Octreo-Scan though, in a heart beat!!!
At last, someone who has the same disorder as my Mother. She was not offered surgery to the liver as 40% covered.Only option was to remove Primary Site in Small Bowel. This stemmed from initial diagnosis of IBS followed by a liver biopsy. A CT Scan was only offered when her symptoms worsened and we were then told there was a Primary Site! Not enough known about this type of carcenoid. Would appreciate input from anyone with knowledge or experience of this. A specific Support Group maybe?
Hi occtreatide bone scan ... I think the occtreatide sticks to carcinoid tumors and shows up very well. MRI are the scans my doc uses but these type of tumors grow so slowly it's months between scans. I also have a blood test that shows up ... can't remember ... doh... cromogratin levels ? They're the go.
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