Early study found it had high accuracy, but experts say it won't replace colonoscopy anytime soon
Hi Kelly, me again (just replied to one of your other posts)! Tachycardia was one of my early symptoms too. They could not find a cause so put it down to a virus. But then when the doctor saw the tachycardia on my chart and put it together with the flushing he could see, and the fact that I was there with acute abdominal pain he started the checks for carcinoid. Mine were unpredictable in terms of when they would h...
Hi Kelly, Crazy as it may sound I would love exploratory surgery! I feel like, surely with all of my symptoms and the fact I can say where I am feeling pain they would have to be able to see it if they went in there! But no one is willing to consider that option yet. I have been having the gallium-68 scan every year for the past 3 years and it has not found anything yet. However it has shown something in my Mum. A...
Hi Supernerogirl - I forgot to mention in my private reply to you that it might be worthwhile getting a copy of the latest diagnostic manual. You can download it for free. It is called: Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management You will want to get the 5th Edition Blessings, Lauri
Hi Ryan, Firstly - I would not want to wait 3 months for the eye to be investigated further! Carcinoids/NETS can show up anywhere in the body, not just the gastro tract - they have even been found in the sinus, and the middle ear. I, too, am 38, and at the time I became acutely ill in 2009 I was the healthiest and fittest I had been in years. I have carcinoid syndrome and am on Sandostatin, but no tumours (Australi...
Hi Don, I have carcinoid syndrome but my tumours have not yet been found. It is difficult when it is such a hard disease to diagnose and treat, and there seem to be conflicting messages from doctors. I live in Australia and was fortunate to find a specialist willing to start me on treatment so I am also on Sandostatin. Funnily enough my mother has since been diagnosed after they found her tumours incidentily. Somet...
Hi Phillip, There are a few considerations to take into account with CgA. One is whether you are taking any PPI medication (commonly used reflux medications). This can raise your CgA levels. My first CgA test came back as 29, but when I stopped my PPI meds and re-tested it was 14. The second is that most comments I read, including from a carcinoid specialist, are that the important thing is the pattern, not the in...
Hi Carsond, we may have corresponded before, I am not sure, but are you on injections of Sandostatin / Octreotide? Hope you are feeling better. Blessings, Lauri.
Hi, My name is Lauri and I live in Australia. I do have the syndrome but so far no tumours have been located. My syndrome is helped by Sandostatin injections. We also know I have it because my mother had multiple carcinoids found in her small intestine. I am writing to you because you do not need your tumours to show up on scans for the Sandostatin to be effective. I have had Octreoscan and I have also had 2 Galliu...
Hi Justagirl, Each person needs to make a choice themselves, but from what I have read previously, what you eat should not effect the growth of the tumours, but can effect the results of blood / urine tests. The wife of one of the carcinoid specialists is a dietician, and she has recommended a particular diet (which I think takes into account the issue of weightloss / poor nutrition of carcinoid sufferers...
Hi qedward, What are the doctors going to do now? Just because nothing has been found does not mean nothing should be done. I have the symptoms of carcinoid syndrome which are treated well with injections of Sandostatin, but even though I have had colonoscopies, endoscopies, a capsule endoscopy, MRIs, CTs, Octreotide Scan, and 2 Gallium 68 PET scans no tumours have been found. My CgA was only a tiny bit high, ...
I have Carcinoid Syndrome but no tumours located. I am being successfully treated with Sandostatin LAR. I am very thankful to God for the many miracles that resulted in my diagnosis.
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