confused about pushing for Octreoscan test

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confused about pushing for Octreoscan test

by cinlee140 on Thu Mar 31, 2011 08:35 PM

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I wrote a few months ago as I was experiencing severe flushing episodes lasting an hour to two hours several times per week. Then suddenly that stopped in November and now I just have face/neck flushing periodically (feels more similar to a hot flash...I am post menopausal). During the severe period I did two separate histamine urine collections and the internist also did a CT scan of my chest/abdomen/pelvis with contrast. He felt confident that this ruled out carcinoid. When I asked about the octreoscan he felt it was not necessary.

I've just received a copy of the scan findings and it mentions several small pleural based nodules in the lower portions of both hemithoraces, the largest of which is 7mm. There are no pulmonary nodules and no hilar or mediastinal lymph node enlargement.

I also had a gastroscopy done this week and they removed a benigh polyp as well as what the doctor called several small "warts".

Does it seem I should insist on the octreoscan....or does it seem like "overkill", if you will? Any thoughts?

RE: confused about pushing for Octreoscan test

by Jenholm25 on Thu Apr 07, 2011 04:42 PM

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Are you seeing an endocrinologist who works with carcinoid?  check out to find a doc.  Neuroendocrine tumors can be ellusive.  People can also have it with normal seritonin levels as well as having an unknown primary tumor location.  However, more conditions than carcinoid can cause flushing also.

Octreoscans are expensive and if there isn't enough evidence to suspect carcinoid, your insurance may not cover it.  I highly recommend seeing an endocrinologist who works with carcinoid and have them do a full work up.

Keep us posted!

Jen (stage 4 carcinoid w/ carcinoid syndrome) 

RE: confused about pushing for Octreoscan test

by cinlee140 on Thu Apr 07, 2011 06:05 PM

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I've been working with an internist. Forgive my ignorance what is the difference between and endocrinologist and an internist?

I have no other symptoms....other then a sliding hiatal hernia and the flushing...which disappears and returns over a period of a couple of years. The most intense period was past Oct and Nov when it was constant.

Also saw an allergist who said he thought it could be a result of medications combined.

I'm at a loss.

Will ask the doctor about an endocrinologist. Thx!


RE: confused about pushing for Octreoscan test

by ccmckenna on Sat Apr 16, 2011 06:24 PM

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I have neuroendocrine carcinoid, but do not have carcinoid syndrome.

I am stage 4 with lots of liver mets but the originating tuor has not been found (many CT scans).


Is there any real reason for getting an OScan at this point?

RE: confused about pushing for Octreoscan test

by Rhianne3011 on Fri Sep 16, 2011 11:44 AM

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If you are still worried about it, then push to get it done, i'd had my carcinoid for a year before they found it and was told before hand that it was just mucus in my lung, so just because the doctors say its done, doesnt mean it is, i think getting the scan would give you reasurance and even if it doesnt show anything, at least you've put your mind at rest, theres nothing wrong with that and dont worry about "overkilling" it,its your body and its your life, theres nothing wrong in wanting to be sure, if its going to put you at ease then go for it !!, goodluck xx

RE: confused about pushing for Octreoscan test

by LauriG on Tue Sep 20, 2011 01:24 PM

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Hi Cinlee - forgive me for the long reply.

I don't know if I have written to you before or not. I have carcinoid syndrome but no tumours have been found. It was very difficult to get diagnosed because no tumours have shown up on any scans (including CT, MRI, O-scan and PET scan). I also had fluctuating serotonin levels in my blood (sometimes high, sometimes normal), and my urine has remained normal throughout.

I had been flushing for years but never thought to mention it to my doctor. I thought it was due to stress and a food allergy. My colleagues later told me that they had observed it getting more frequent over the preceeding 4-5 years. I only got investigated for carcinoid because the surgeon who took my 'healthy' appendix out (I had sudden onset abdominal pain) noticed I was flushed in hospital and ordered the serotonin test.

It took me 12mths to get diagnosed - and I spent almost every night on the internet researching carcinoid. Some of the things I found out is that the tumours can secrete intermittently (hence my varying results), and also that there are plenty of people out there who's primary tumour has not been found because it won't show up on scans (Dr Pommier - US specialist surgeon says the primary can be the size of a pin head). It is unusual but not impossible to get the syndrome withoutanytumours showing up (i.e. they often find mets).

Whether or not you decide to go ahead with the O-Scan, I would recommend that you plot on a calendar when you have flushes, how severe they are, and how long they last. Also plot any other carcinoid related symptoms - heart palpitations, abdominal pain, wheezing (which I didn't have), changes in bowel habits (I rarely had watery diarrhoea, more just sometimes going about 7x in one day). You can then take this to your doctor. In me it showed a progression of symptoms, even though they weren't happening every day. And as I said, my flushes had been increasing over 4-5 years.

Hope this is helpful not confusing!

Blessings, Lauri.

RE: confused about pushing for Octreoscan test

by cinlee140 on Tue Sep 20, 2011 03:06 PM

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This is extremely helpful, thank you. I too have sort of concluded that it is a combination of medications or something as it as pretty much stopped. The full body flushes (lasting an hour or longer) have completely stopped, now I just get what feels like hot flashes (I am postmenopausal) that are quite fleeting....several times a day. I will start charting those anyway. I can't say that I have any other symptoms.

RE: confused about pushing for Octreoscan test

by uvbogden on Thu Dec 15, 2011 12:02 PM

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You should consider a radionuclide-octreotide PET scan, which shows tumor beter than CT or the standard Octreoscan, and also you should think about geting an exploratory laparoscopy so the surgeon can run the length of your gut visually.

Patients who had debulking of the mets and resection of the primary live longer with better quality of life.

RE: confused about pushing for Octreoscan test

by cinlee140 on Sun Jan 15, 2012 06:25 PM

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Hi again....

I just received a notification from the hospital that they want to re-do a CT scan coming up on a year . I'm thinking I'll pass on the CT scan ...not thrilled with the levels of radiation and try and convince my doctor that I would prefer the Octreoscan. They seem reluctant to refer me (in Canada) as my histamine levels didn't register any problem with the two 24 hr urine collections I did. They did a laparoscopy also..and removed a few small pollips and gave me a clean bill. I haven't had the colonoscopy yet. So I'm thinking maybe just say no to the CT and push for the Octreoscan...if they won't do it here, go down to the states where I also have insurance.

Bottom line my question is...I've only had one CT having a 2nd - A) worthwhile B) risky due to radiation? the last year I have only had 2 flushing attacks and they were far shorter than before. I think they are thinking those will go unexplained???

Thanks for you time...I really appreciate it.



RE: confused about pushing for Octreoscan test

by LauriG on Tue Jan 17, 2012 11:51 AM

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Hi Cindy,

At the bottom of my reply I have attached excerpts from 2 replies to questions about the effects of CT radiation, posted on the ACOR Carcinoid blog which may be of interest to you. It certainly doesn't hurt to get the opinions of others, then it is up to you to make the final decision. 

My tumours have not shown up on any scans. Am off for my next Gallium 68 PET scan shortly (have had 1 so far 12mths ago). Do you have access to this in Canada? It is meant to be even better than an O-scan. An interesting source of information about the challenges locating carcinoids is found in the lecture by Dr Pommier at the 2009 NET conference in Mt Sinai. You can access recordings of this presentation online, and it is well worth watching the whole lecture.

I think I have previously mentioned to you the benefit of keeping a symptom diary on a calendar, so if you do decide to step back from being tested at this stage you can at least monitor any changes for the future. Hope the below info is useful:

"To answer this question I went to Greg Espenan----- the radiation helth physicist at University Hospital in New Orleans-- he is the one who gives the radition lectures at the national meetings here in New Orelans

Your natural cancer occurance rate in the USA is 30,000/1,000,000 people per year. 1rem of radiation increases your chances of getting cancer by 1/1,000,000

CT scans of chest or abdoment are about 1.5 rem (maximum)

Thus if you had 30 CT scans you would increase your risk from 30,000/1,000,000 to 30,045/1,000,000 people per year.  

If you miss an early recurrence and you die or it takes time off of your life expectancy ----the risk is 100%." (Post by Dr E. Woltering)


"There was a major study that was recently posted that looked at 600 000patients who were treated with external beam radiation for cancer treatment.

These are doses that are anywhere from 200 to 2000 times greater than whatone would receive from a CT. The chances of getting a secondary cancer was 1

in 1500. We have lots of things to worry about and it's my opinion that froma risk/reward perspective one shouldn't lose any sleep or be overlyconcerned on this issue.. Regards Tom"


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