laurig

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!

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.

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

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 (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.

Blessings, Lauri.

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.

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:

http://itr8.com/hosted/ccf/mtsinai09/presentation_links.htm

Hope it's helpful to you.

God Bless, Lauri.

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 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?

Blessings, Lauri

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 Gallium 68 PET scans, and nothing has shown up. And yet the injections make a dramatic difference to my symptoms. But the injections are not just for symptoms. Several studies have shown that Octreotide (Sandostatin is the brand) can cause stabilization of tumour growth, and in some even caused tumours to shrink. It also prevents further cardiac damage from any excess serotonin released for if your tumours are secreting at times you are not being tested (they can secrete sporadically - and they can be secreting even if you do not have any observable syndrome symptoms).

I can fully understand your anxiety and depression, it is such a scary and confusing time. Just know that this is not like normal cancer. It is usually very slow growing, and even when it has spread extensively it can still be managed very well. The statistics they have on the internet regarding life expectancy are no longer relevant because there are so many things they can do. One thing that I found encouraging was the lecture by Dr Pommier at the 2009 NET Conference in Mt Sinai. It is at the following link:

itr8.com /hosted/ccf/mtsinai09/presentation_links.htm

At www.carcinoid.org website you will find a list of carcinoid specialists which would be a good idea to look at - perhaps your oncologist could refer you to one of them, or else consult with them.

There is another online support group called ACOR Carcinoid Cancer Support Group which not only has a section for patients, but also has a blog that doctors can join to seek info from a specialist.

Please don't lose heart and don't feel alone.

You are in my thoughts and prayers, Lauri.

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 caused by the bad diarrhoea). You should be able to access it through the carcinoid cancer website. If not let me know and I will see if I can find it.

Blessings, Lauri.

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, and it went back to normal when I stopped my reflux meds. My urine 5-HIAA has always been normal. My blood serotonin fluctuates between mid-normal and a little bit high. I was started on Sandostatin injections in 2010, and they were a lifesaver for me. At Easter time this year my Mum was found to have 9 carcinoids in her small intestine, all smaller than 8mm. She had no symptoms and they were found by accident when removing an ulcer. Now (I only found out today) my brother (39yrs old) has to have a 2cm tumour removed from his small intestine.

Make sure that your husband keeps a symptom diary on a calendar, recording how often and how badly he flushes, any changes in bowel movements, when he has nausea etc. This is very helpful for when seeing a doctor. Also, I found it was really important to have photographs of my flushes to show my doctors.

If you send me a private reply with your e-mail address I can send you some info that might be helpful when talking to your doctor.

Blessings, Lauri.