One patient with glioblastoma still alive nine years later
Hi - haven't been on for ages and just saw your post Hanginginthere.
There are carcinoid specialists who would disagree with the decision not to operate - they have found that, unlike other cancers, removing some if the tumours, even if it is not possible to get it all, will greatly improve symptoms and life expectancy. If you would like more info let me know and I can direct you to an online presentation ...
Have not been on for a very long time so only just read your posts. I got diagnosed with syndrome in 2010, but they have not been able to locate my primary despite me having had 6 Gal 68 Dotatate PET scans in that time (meant to be the best at finding them). However in 2012 my Mum was having surgery to remove an ulcer from her small intestine and while in there the doctors discovered by chance that sh...
Hi, just wanted to check if you had anyone reply to your post? I am in Australia and am aware of people having successful pregnancies, but don't know if I would have useful info to offer in particular....
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
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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