Researchers still found 'excellent' survival rates for both primary, secondary disease
One thing I would encourage you with is that NETS are usually slow growing, and can take time to diagnose, so slow and steady is ok - getting the right info and gathering that info over time. I was fortunate because for me it was a year from distressing symptoms (acute abdo pain in particular) until I got diagnosed at 36yrs old. Although I had been flushing since I was 18yrs old.
My tumours have not been...
I have Carcinoid Syndrome but they have not been able to find my tumours yet - diagnosed 2010. But.... in 2012 my Mum had an ulcer removed from her small intestine and they found 9 carcinoid tumours while they were in there, all smaller than 8mm. They were contained within the bowel wall, so only showed up because of the endoscope shining through during the surgery, otherwise they would not have been found...
Hi Jennifer, I haven't been on in a while, have we connected? My Mum and I both have carcinoid.
Lauri from Australia
Hi Timit, I too am a 38 yr old female, and have had carcinoid symptoms since I was ~18yrs old, although for me my main symptom has been flushing, with the other symptoms emerging within the last 10 years, and particularly since I had my "healthy" appendix removed in 2009. My CgA was initially slightly elevated when testing began in 2009, but I discovered this was caused by the reflux meds I was on at the time (...
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...
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.
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
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...
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.
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...
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.
We care about your feedback. Let us know how we can improve your CancerCompass experience.