... 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?
Octreoscan - I have Carcinoid Tumor, have had liver, 2xsmall bowel resection and gall bladder?
- Posted:
- 25 Feb 2010 by timesplin
- Topics:
- octreoscan, carcinoid syndrome, carcinoid tumor
Details:
Responses (3)
itsmetoo225 Feb 2010
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.
30 Jul 2010
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.
29 Mar 2011
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?
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Thankyou for the information you have posted about yourself. My Mum was only diagnosed 12 months ago but her liver is inoperable as covers 40%. She had Primary Site removed from Small Bowel 7 months later. You are right, you have to push to get answers and treatments. I am frightened about her life expectancy and 10 years would be a wonderful prospect for her but who knows. If you have any ideas on other treatments or specialists I could contact, I would very much appreciate that. Good luck and Best Wishes to You.