Small trial suggests the scans might help, but experts aren't so sure
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by LauriG - January 23 at 1:24 PM
On Oct 04, 2014 4:10 AM Hangingthere wrote: My husband has had diarrhea. It was only for 2 weeks, though. He was probably going to the bathroom about 8 times a day, also. My husband had a few accidents as well. My husband's pain is due to his appendix cancer that was NOT removed. With the cancer having already spread, the doctors didn't want to do surgery which could open up a whole new can of worms. The surgeon said that operating would not change the prognosis.
On Oct 04, 2014 4:10 AM Hangingthere wrote:
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 by a specialist that talks about this.
by LauriG - January 23 at 12:56 PM
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 she had 9 carcinoid tumours, all smaller than 8mm, and all fully contained within the wall of the small bowel. They were only visible because of the light of the endoscope shining through the bowel wall, otherwise they would never have known they were there. And she had one lymph node met. So they are very good at hiding!
by LauriG - March 23, 2014
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....
by LauriG - October 14, 2013
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.....
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, 2013
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 (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, 2013
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!
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!
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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