Carcinoid Syndrome

Hi, I am 40 years old and a single mum of a fabulous son almost 17, living in Suffolk.
I am currently awaiting 5-HIAA(24 hour urine collection) test results for carcinoid syndrome after being admitted to hospital recently with **"asthma", flushing of the chest, face and neck and palpitations on several occasions. I have suffered with diarrhea for many years (recently diagnosed as Irritable Bowel Syndrome after a full colonoscopy which was clear apart from a few benign polyps) and have been "asthmatic " for 16 years, also diagnosed with depression many years ago but this has been much less severe in recent years.
I am Currently conducting lots of research and discovered that people with carcinoid are often diagnosed with IBS, Asthma and Depression. Fortunately I saw a doctor in hospital who has looked at the big picture and put two and two together. I am trying not to frighten myself and am realizing how lucky I am after reading many stories of other peoples experience of this disease, some not so good but most very hopeful. The waiting game is the worst but I do have an appointment to see my consultant in a few weeks. It's just the wondering that if I do have a carcinoid, where is it? (I know it is not in my intestine due to the full colonoscopy – the surgeon even showed me the inside of my appendix!) Will they be able to find it easily? Has it spread (mestastisis)? What will the prognosis be?
While in hospital I had two chest x-rays, along with blood gases tests and other bloods, all clear, so am "assuming" the possible carcinoid is not there. Initially I was put on a very high dose of steroids which is normal after an attack but have since been taken immediately off them, told to stop ventolin (with surprising positive results) and put on an inhaler called Symbicort which has helped immensely and am not relying on it to relieve wheezing.
I do have a couple of questions bugging me and would appreciate any feedback:
If you have carcinoid syndrome does this mean you definitely have a carcinoid?
Is a neuroendocrine carcinoid the same as a neuroendocrine carcinoma?
Does having the syndrome mean there is metastisis?
As I said, trying to remain calm and hopeful until I have the results but just wanted to say hello and to wish you all the very best with your own journeys and if any of the above information is of any help then I am happy to share it.

** now disovered to have been bronchospasms (a symptom of the syndrome) rather than asthma, the attacks did feel different.

Yes, if you have the syndrome you have Carcinoid and it will have metastastisized, because thats what normally causes all the problems. Cant answer the Carcinoma, but just Google it and you will get the answer.

Where abouts in Suffolok do you live?

Keep your chin up and to add to your research, I had all the IBS problems!!!! but my doc diagnosed Carcinoid very early, so I was lucky.

Take care

Thank you Sally, that's just as I thought, you know how your mind plays tricks on you at these times, but I know my body. I know I haven't been diagnosed but am arming myself with as much info as possible, I would rather turn around and say "oopsie I was wrong" than not have a clue when I see my consultant.

I am in Lowestoft, and yourself?

So how are things with you, how are you feeling and are you receiving any treatment? Would appreciate anything you wish to share and am open to questions myself (I have trawled the internet for hours lol).

Take good care. Amanda.

Although its easy for me to say, but the best thing you can do is await your results and go from there.If you look in to deep you can find results that wont relate to you. You will wind yourself up by reading too much into everything.

Luckily, I am really well at the moment, as you would have read, I have had many years of this disease but I am on Sandastatin and a number of other drugs dealing with various symptoms, so I do rattle a bit - BUT I AM WELL, so think on that positive note. Do ask as many questions as you like.

p.s I live near Newmarket, so not so far away.

Take care
Sally

Thanks again Sally, I understand what you say, one step at a time. I do have good news though:

I have just had great news, my 5-HIAA urine test results for carcinoid syndrome are normal! Apparently my consultant will be writing to me. However, I know this makes me sound like a hypochondriac, but, has anyone heard of or experienced a negative result but then gone on to discover they do have carcinoid syndrome. I have read that a medication I take, fluoxetine, can produce false negative results, to do with serotonin (the thing they are measuring). Of course I will be talking about this with my consultant when I see him on 6 July and I am sure he has taken this into account. It's just that I do seem to have 5 of the syndrome symptoms (diarrhoea, flushing, wheezing, palpitations and Telangiectasia - blood vessels on neck, chest and upper arms)and after several visits to A & E and two stays in hospital this is what a doctor suspected. I am sorry if this makes me sound like an idiot, so many of you are on such awful journeys, but I understand that with this being such a rare disease, it is often not spotted early enough and many go on to suffer dreadfully with surgery and medication. To those I send by fondest thoughts.

So how are you doing today, still rattling he he? Sandostation, is that the drug you have to inject yourself, how do you get on with that?

Hoping today finds you well, take good care and would be good to stay in touch. Amanda xx

I have heard of negative results on the 5HIAA. although they did have carcinoid, i believe I read it on this site somewhere as well, sorry can't remember where or when as my 5HIAA results were off the scale.

Sandostatin is the long acting form of octreotide normally taken every 2 - 4 weeks, a nice big injection in your bum (mine is mighty sore this time, had it Monday) often don't even know I've had it.

Have a good weekend
Sally

Sweet_pea
I have recently been diagnosed has having a carcinoid tumor. I went to my GPs with nothing more than a feeling of bloat, discomfort and heartburn.
I had ultrasound which initially picked up the tumor, then had a gastroscopy to check my stomache (they found an hiatus hernia by chance) then went on to have various CT scan and octreotide scans.
My hormone marker blood tests were normal, not sure about the 24 hour unrine test, however I have been told that there is no spread so thats a huge relief. I dont have syndrome thankfully, but all this came as such a shock to me.
The tumor is in whats called the mesentery area near my colon but can be removed surgically. I have to have a small section of my bowel removed too as they think this is where it all started.
I know they say this is a rare and none aggressive form of cancer but my feelings and emotions are still all over the place.
Did you have any CT scans yet?
Please keep in touch, maybe we could exchange e mails?

Take care
Sue

Hello Sue, sorry not replied to you as you sound worried, just been on holiday and only got back last night.
I can understand why you are all over the place, the word cancer hits us really hard and know one can tell us the future.
You should be having CT scans and ongoing tests, but it sounds like they are on top of things by removing the tumor and bowel removal.
Find out if your hospital have a neuroendocrine nurse, as they are very helpful. Keep your chin up and keep posting. xxx

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Hello Sweet Pea

Just wondering how you are and what is happening with you now?

You said your 24hr urine test was normal but did you have cga blood test done? or any other test or scan done?.

I am waiting on test results at the moment as for last 18 months i have had chronic loose bowels, facial flushing and pain under left rib area and under arm.

please let me know how you are.

Dawn

Dear All,

Those of us who are on monthly injections either Lanreotide for Sandostatin and need sub_ cuts can you post how many, on average, you use in any give month. Also who is providing the sub cut octreotides.

I find that they treat my symptoms towards the end of the month, however Im meeting some reluctance to prescribe.

Best wishes,

Gill

Hi Gill

I do about 10 per 4 week period on average. Life would be pretty miserable without them - not to mention the probability that proper symptom control with octreotide/lanreotide is strongly linked to stopping the tumors grow and preventing the development of carcinoid heart disease.

The standard literature put out by Novartis says that around 65% of people on the long-acting preparations need rescue shots as well, not to mention the UK guidelines on managing nets. I could send you copies if you want, but presumably the best thing would be to get your consultant (or net nurse, if you're in touch with one) to send a note to your GP.

Bye for now

David

Hi David

Thanks for getting back to me, would be interested in receiving any data concernng your email.

My email address is jilcrismor@aol.com.

Be pleased with that info

Thanks David

Gill

Hi there - I was diagnosed in April this year with carcinoid tumour in small bowel also in mesentry and also liver. Had the tumour in mesentary and a small bowel resection apparently ten tumours in small bowel and in 6 lymph. Had a micro bubble ultrasound two weeks ago and have another three tumours in the liver. The good news seems to be I do not have carcinoid syndrome.

Have had stomache problems for about 5 years and was told last year that it was constipation and eat prunes so all this has been a bit of a shock to put it mildly. There seems to be very little support for anyone with this type of cancer or is it there and I just have not been able to find it? Would be really interested to know anyone's experience as I feel isolated.

Thanks

Bonny

Little confused Bonny, but here goes. Not everyone with carcinoid get the syndrome (flushing, racing of the heart, sweating, swelling of the face and body sometimes, collapse), often the more tumours in the liver can set this off. My advise is to read through this site and the forums and you will see you really are not alone. My tumours are mostly in the liver, but are spreading to my bones so we all have different symptoms, I have the syndrome.

Have a read and get back to us with any questions, we dont want you to feel alone.

Sally xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx