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RE: Do I have a carcinoid or not?

by LauriG - July 03 at 12:38 PM

Claire, I agree with Tine1, definitely keep pursuing doctors and get to a specialist.

MRI is not good at visualizing carcinoid (that is written extensively in the literature), so MRI should not have been used to rule it out. If they wanted more confirmation than the Octreoscan they should have referred you for a Gal 68 PET scan (I am not sure how hard it is to get referred for one of those where you live).

Your symptoms are so intrusive. Injections of Sandostatin should definitely help those symptoms, but the most important thing is for them to remove the tumour.

My 5HIAA has always been normal. My CgA has mostly been normal, and my blood serotonin has fluctuated between high and mid-range normal. If your tumour is not secreting at the time you have the test the result will come back normal.

Keep fighting!

Warm Regards, Lauri.

RE: Do I have carcinoid?

by LauriG - July 03 at 12:24 PM

Hi Britbed,

Obviously there are probably a number of possibilities for your symptoms, but I think you are wise to consider carcinoid. In other words, don't want to worry you that you might be right, but also think it is important not to ignore it. The fact that you are already searching for possibilities online tells me that you feel something is not right.

I first started flushing around the age of 18yrs, so must have had active tumours then without knowing it. In fact I never mentioned my flushing to my doctor. I did not have any further symptoms until I reached my 30's when I got heart palpitations, then in my mid-30's acute abdo pain and bowel issues started.

But that is not the case for everyone. My Mum was 65 when they found her tumours (2 years after I was diagnosed), but she did not develop noticeable syndrome symptoms until after her surgery.

I am now 40, and have had extensive testing and scans, but they can't find my tumours. Again, that is not the case for everyone. There are still many who have the tests or scans done and it does reveal a neuroendocrine tumour.

The main thing is to get tested, and if your results come back as normal but another cause is not found, continue to get tested (e.g. make the blood tests part of a yearly check-up, or more regularly if symptoms worsen). I would also recommend keeping a record of when you flush, how long it lasts, whether there was an identifiable trigger; as well as when you have diarrhoea. If you notice the symptoms are developing over time then you have something you can show your doctor. And, take photos of your flushes, which you can use to show doctors who might be assessing you for the disease.

As I said at the start, these symptoms don't mean you have it, but it is good to be vigilant.

Wishing you all the best, Lauri.

Hi Kathy, I have different looking flushes depending on the trigger. One of my most dramatic flushes is triggered by leaning forward. My hypothesis is that I am squishing something causing it to do a hormone dump.

It is still worth doing a colonoscopy - it is just that a clear colonoscopy doesn't guarentee no cancer. I still get one every few years. The last one I had the gastroenterologist (who had initially told me he didn't think I had carcinoid but was then the one who found it in my Mum) said that he looked as far into the illeum (very common carcinoid place) as he could, but could not find any tumours. I have also had capsule endoscopy (where you swallow the pill camera) to see better into the small intestine, but that came back inconclusive.

Definitely seek a second opinion. If the tumour/s weren't secreting at the time you did the blood and urine tests that would explain the normal results.

Keep on seeking those answers. It was just over 12 months from my acute abdo pain and appendix op where carcinoid was first raised as a possibility until my Sydney doctor who I sought a second opinion from started me on Sandostatin to confirm the diagnosis.

Warm Regards, Lauri.

On Apr 11, 2015 2:22 AM Sydneygal wrote:

On Feb 05, 2012 10:00 AM LauriG wrote:

Hi Jessica, I might not be the best one to reply in that my 5HIAA has always come back as normal and no tumours have been found yet. However I have been confirmed as having the syndrome due to elevated blood serotonin and the fact that my symptoms are controlled by injections of Sandostatin. The 2009 Diagnostic manual for NETS says that the 5HIAA test detects about 84% of patients with carcinoids, but that no single measurement (i.e. blood test or urine test) detects all cases of carcinoid syndrome. In fact, Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com " target="_blank" rel="nofollow">Buzzle.com says that approx 15% of carcinoid patients may have all blood markers and 5HIAA urine tests in normal range. I am not saying that to worry you, but to arm you with info to take to your doctor if the tests come back as normal.

One of the difficulties too is that it is not necessarily serotonin causing the flushing (let me know if you want the name of the journal article on this). There are other chemicals the tumours secrete which may be more responsible for this aspect of the disease, while serotonin causes the diarrhoea (Aussie spelling!). So it is possible to flush during the urine collection and still have normal levels.

One of the things that proved helpful in me obtaining my diagnosis was to plot on a calendar when I had my symptoms and how severe they were (e.g. whether a normal, medium or extreme flush and how many in a day;  when having pain; when heart palpitations; when going to the toilet frequently). I did not have symptoms 100% of the time, and my blood serotonin was not elevated all of the time, but my symptom calendar demonstrated an increase in symptoms over time. The other thing that was helpful was for me to take photographs of my flushes with me to the doctor.

There is so much that is helpful to know when it comes to getting diagnosed, so let me know if you want more info. For example, your flushes will look different depending on where the tumour is located, so it is important to know whether your flushes are pink to red and fade relatively fast, or if they are very deep red to purple and last for hours. Also, Dr Pommier says in a lecture that you can watch online that it is common for carcinoids to grow to the outside of the bowel wall rather than the inside, which means they may not be visible on colonoscopy/endoscopy etc. I would recommend watching it. Link is:

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Let me know how you go with your tests.

Blessings, Lauri.

Hi Laura

I'm Kathy from Sydney/Australia.  63.5 year-old woman (post menopausal).

I have just now joined this blog.  At the moment I'm all sixes and sevens.  My symptoms are flushing (not all the tiem) (pink - worse when I bend forward and touch my face to put cream on etc - the latter disappears immediately I get my hands off my face - I don't flush whilst exercising) and abdominal cramps (sometimes) - but I have fibromyalgia and IBS so I blame every knew symptom on that.  Had the 5-HIAA two months ago and the doctor said it was normal - I can't remember exactly what he said about another reading (something to do with the liver) but he said that reading was because I was slight build.  Then I had the CgA done last week and it was slightly elevated - I think he said it was 42 (and he said the top level was 37).  He then talked to a pathologist who said she wanted to run the 5-HIAA test again.  So today I'm on the eating regime and will start collecting urine tomorrow.  I have no idea why they are doing it again, particularly as you say that the tests don't confirm anything.  I didn't experience heart palps except last night and today when I've had total meltdown so I guess its anxiety.  Can't stop crying.  I usually don't feel sorry for myself - I've been through/going through a lot for past 20 years - also have chronic vertigo and have managed to stay positive and take very good care of myself.  If what I'm writing doesn't make sense, blame it on the fact that I'm really out of it, having had no sleep and worrying like crazy.  I feel as though I've been given a death sentence.  I understand that's crazy but I'm in a really dark place (I've never suffered depression).  The more I read on Google the more upset I get - but I like to stay informed but its so overwhelming.  I feel as though I'm holding my breath all the time (anxiety no doubt).  I walked into the docs the other day fully expecting a normal reading of the CgA - walked out stunned. 

Thanks and kind regards.

Hi Kathy,

Also just seeing this message for the first time.

Where are things up to with you now? It is such a horrible and confusing time when you don't know for sure what is causing what is happening to you. Of course it is going to make you emotional, which might also make your symptoms worse.

There is a wonderful support group in Sydney called the Unicorn Foundation. I would recommend that you look them up because I have found it really helpful getting to meet other people with this disease and sharing that emotional support. They also have the most up to date information on NET cancer, and there is a patient support nurse who can answer your questions.

I hope you have got some answers since your last post.

Kind Regards, Lauri.

Sorry Kathy, I have not been on in a while so only just saw your message.

That post was from several years ago and Tassie is where the labs in Queensland used to send them. Now I think they do most of the carcinoid tests locally.

Sorry I did not see your post sooner to clear up that confusion. A lot changes in the medical field in a couple of years!

Kind Regards, Lauri.

Hi Karen, I haven't been on in a while and am just catching up. I read your post. Since I was last on here they still have not found my tumours. What I will tell you is that the only thing that has made these past 5 years bearable for me is being on Sandostatin injections. I have had to have some dosage increases over the 5 years, but when the levels are right I can be almost symptom-free (as long as I don't have alcohol or engage in one of my significant triggers). I was fortunate to find a doctor willing to start me on the treatment without confirmation I have this disease, so I don't know if this will be an option for you, but worth an ask. All the best and I hope you find answers soon.

RE: New diagnosis carcinoid

by LauriG - June 06 at 9:07 AM

Hi Aireny,

Is the doctor putting you back on the Sandostatin injections? That is all that I can suggest. Even after all this time, and multiple Ga68 Dotatate PET scans, my tumours are still hiding. Injections of Sando are my only treatment option at the moment. If I were you I would be asking to be put on long-acting Sandostatin, and having short acting rescue shots for in between as needed. The only other thing I can suggest is that you try and notice your triggers and avoid them (e.g. for me triggers are alcohol, stress, not enough sleep, exercising too hard, eating large or very fatty meals, certain posture, anaesthetic). I know it is not always possible to avoid our triggers, and sometimes I will flush and have no clue why.

Hoping you can get some answers soon. Thinking of you.

RE: Carcinoid Cancer-So confused!!

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.

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.

Lauri.

Hi Tanya,

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!

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....

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About laurig

Patient
Other Cancer
Biotherapy

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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