Researchers still found 'excellent' survival rates for both primary, secondary disease
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by LauriG - October 14 at 10:20 AM
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 located, my 5HIAA has always been normal, and my other blood tests have fluctuated between high and normal. This caused my local specialist to believe I did not have carcinoid. But to another specialist I took photos of my flushes and a calendar with my symptoms marked on it showing a progression over time, and this helped in my diagnosis. For example, for me, the calendar showed that every few weeks I would have a couple of days where I would have a BM up to 8 times in a day. And yet other days I was just normal. And this was happening more frequently. It also showed that my flushing was increasing in frequency and intensity (I would mark if it was a mild, medium or extreme flush, and how many in a day).
Then, having the blood tests re-done at regular intervals showed that sometimes they were normal and sometimes high. My specialist that diagnosed me knew what is only now being mentioned in the diagnostic manual - that if the tumour/s aren't secreting at the time of the test the result may come back normal.
I am not saying that you definitely have carcinoid, and unfortunately it is a bad disease to have when you have been considered a hypochondriac because the symptoms are so vague and hard to prove.
In your particular case though, I would recommend getting yourself a blood pressure machine so that you can measure your blood pressure and heart rate when you are flushing and give that to your doctor.
Let me know if you would like more info.....
by LauriG - October 14 at 9:57 AM
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 because they were not visible even on capsule endoscopy. And even though the biggest was 8mm, she still had a lymph node test positive.
So... absolutely more investigations should get done.
by LauriG - August 29 at 2:31 PM
Hi Jennifer, I haven't been on in a while, have we connected? My Mum and I both have carcinoid.
Lauri from Australia
by LauriG - August 29 at 2:20 PM
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 (omeprozole). Since being off that my CgA has been normal. Apart from a sometimes elevated blood serotonin level, all of my other blood and urine tests have come back normal, as have all of my scans. I was fortunate to find a doctor who paid heed to the symptoms and trialled me on Sandostatin injections, which made a dramatic difference to my symptoms. He "diagnosed" me in this way in 2009. In 2012 my Mum had abdominal surgery to remove an ulcer and they found 9 carcinoid tumours in her small intestine, so this was confirmation of my diagnosis.
I would definitely recommend that you have further investigations, and also see if someone is willing to start you on treatment. All the best with it. I am happy to answer any questions you may have.
Blessings, Lauri from Australia.
by LauriG - May 18 at 12:12 PM
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 happen. I certainly noticed them more when I was lying down, but that could have been because I was relaxed and not distracted by other things. My first trip to the hospital with it though was when I was at work, and I wasn't lying down there!
by LauriG - May 18 at 11:53 AM
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.
Another Australian with carcinoid had the gallium-68 scan which showed up about 3 tumours and about 4 nodes, but when he had surgery they removed more than 40 tumours.
I know that some would say "don't do it" when it comes to exploratory surgery, but me ... I would go for it!
by LauriG - May 18 at 11:45 AM
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
by LauriG - May 18 at 11:40 AM
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 (Australian spelling) have been found. Some docs disagreed with the diagnosis because of this, but my Mother got diagnosed last year when they found 9 carcinoids (all smaller than 8mm) in her small intestine when doing surgery for something else.
What sort of PET scan did you have? Normal (glucose-based) PETs are usually not effective in finding carcinoids because they are designed for fast-growing cancers. The only PET I have heard of as being effective is the Gallium 68 Dotatate or Dotatoc scan. Having said that, I have been having this scan every 12 months for the past 3 years and nothing has shown up.
I have had every scan and 'oscopy that you can get and they have been unable to find my tumours. Most of my blood tests have been normal and my 5HIAA has always been normal. The only indicator apart from my symptoms was a sometimes elevated blood serotonin. The reason it is only sometimes elevated is probably the same reason you only sometimes have diarrhoea - these tumours can be "cyclical secreters", so you may only be getting the hits of hormone release sometimes, not constantly.
It's strange because having an elevated normetanephrine and headaches sounds more like a Pheochromocytoma, another type of NET, but it doesn't mention diarrhoea as a symptom.
It might be worthwhile getting a copy of the latest diagnostic manual which you can download free off the internet. I can't remember the web address but the title is: "Neuroendocrine Tumors : A Comprehensive Guide to Diagnosis and Management" and they are up to the 5th Edition.
If you want me to send you any other info I have gathered on Carcinoid, just send me your e-mail address in a private reply.
by LauriG - May 18 at 10:38 AM
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.
Something that you may find useful to look at is the recording of the presentation by Dr Rodney Pommier at the 2009 NET Symposium. He does surgery on people that other doctors refuse to touch - although whether this would include your situation I don't know. I found his presentation very informative and helpful regarding a number of aspects of this disease. The address is:
Hope it's helpful to you.
God Bless, Lauri.
by LauriG - January 19, 2013
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 initial result. So if you are retested and the level continues to rise, then that would be an indication of the need for treatment.
Did you have any scans before or after your surgery? Did they take lymph nodes? Did they find any metastases at the time?
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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