New and frustrated

Hi, I'm new here. Found it interesting to read others stories. I had my appendix out when I was 18 because they thought I had appendicitis. Appendix was fine but it ended up having carcinoid tumor on it. Now, 13 yrs later, my oncologist said i have carcinoid syndrome because of elevated 5hiaa. And flushing and diarrhea. On long acting octreotide which is helping symptoms and lowering 5hiaa. But have had every kind of scan including pet and they can't find tumor. Having really bad pain in right upper quadrant. Saw that others have had this pain too. Anyone find out why? My doc thinks I'm crazy cause nothing is showing up on scans. Taking tramadol for pain and sometimes oxycodone. Am going to a new docs at Hopkins next month cause I think my doctor is nuts. He won't listen to me and will only let me get the shot every 28 days even though my symptoms come back around 21 days later. Basically am wondering if anyone has any ideas on the pain. My chromA has always been normal. Thanks in advance.

Hello Slacker:

     My advise is to get a Carcinoid oncologest.  Most Doctors have never treated Carcinoid and are way behind the curve.  So many new things to try.  Give em hell.  dc

G'day Slacker,

I have carcinoid syndrome but no tumours (Aussie spelling) found. But my Mum had 9 tumours found in her small intestine at Easter time this year. They were all smaller than 8mm. They had metastasized to 1 lymph node.

I have had two Gallium 68 Dotatate PET scans, not showing anything. Each time I have had one I have asked the radiographers how big a tumour needs to be to show up, and they always say 1cm. So my Mum's tumours would not have shown up on a PET scan.

I have been on Sandostatin LAR for 18 mths, and unfortunately the last two months my injections have not been as effective and I am getting my symptoms back (including the upper right abdo pain) after 3 weeks. I am seeing my doctor on Monday, and am going to ask if I can have exploratory surgery now that we know where my Mum's tumours were. Perhaps they will find something to explain the upper right abdo pain if I have surgery.

There is an article that would be good for you to give to your doctor because it talks about how tumours smaller than 1cm can still be active and metastasize. Let me know if you can't download a free copy and I will e-mail it to you:

"Early-Stage Carcinoids of the Gastrointestinal Tract" by Jun Soga in Cancer April 15, 2005 / Vol 103 / Num 8

I have also seen quotes by a carcinoid specialist saying that the amount of activity (i.e. how bad your syndrome is) is not related to tumour size, so you can have a large tumour that secretes very little, or a tiny tumour that secretes a lot.  I have also seen quotes that talk about the fact that mets can be only millimeters in size, therefore don't show up on any scans.

Another Australian I talk to recently had a PET scan which showed something like 3 tumours and 4 lymph nodes, but when he went in for surgery they removed 40 tumours! So Carcinoid as a disease is very difficult to pin down.

Blessings, Lauri.

Slacker,

Here's what I recommend:

1. Find a carcinoid cancer specialist out on the Carcinoid Cancer Foundation website and make an appt

2. Have you had an Octreoscan (specific to this cancer)?  If not, get one.  The only one better than that is the GA-68 scan.  I believe there are only 2 currently available in the US - one at Vanderbuilt, and the other at the University of Iowa Hospitals with Dr. O'Dorisio.

3. My guess is that your gall bladder is trashed.  The sandostatin shots will completely trash your gallbladder.  It could also be your liver, but the gallbladder is always the 1st one to rule out.

4. You can get Sandostatin LAR more often than every 28 days, and if you're having symptoms a week early, then your doc should adjust it.  If he won't, then go to someone who will.  (Get to someone who knows what the hell they are doing.)

5.  My 5-HIAA and CgA have always been normal - even with tumors in me.  I now have tumors all over, but still have normal tumor markers.  I'm 1 of about 5 patients who are like this under Dr. O'Dorisio's care (in IA).

6. Get to a carcinoid cancer specialist!!!

Keep us posted!

My best,

Jennifer Holm

Support Group Leader for the State of Iowa

Iowa Carcinoid Connection

Hi Slacker,  My hubby Jim has carcinoid, and also takes the shots every 28 days.  Ask your doctor to order the short acting Octreotide shots that you can inject yourself. They are called rescue shots, and many Car. patients need those as well as the once a month shot.  Dicyclomine did wonders for Jim when he had the abdominal pain. Even Morphine did not touch the pain! Maybe you can ask your doctor if he can prescribe it for you.   It sounds like your doctor knows nothing about Carcinoid. You need to be under the care of a Specialist! If you have not already done this, go to the carcinoid cancer foundations website and click on (I think it says find a doctor) and get yourself to a Carcinoid specialist. Thers not alot of them out there, but believe me its worth it to travel to see one, because this is your life.   Drs Boudreaux and Wong in Kenner LA did surgery on jim and  thats when they found the primary tumors, he had alot of them.  They were able to get them all out except a few in his liver, which we're waiting on test results to see what the best treatment would be for those.   I really hope you can get some relief soon.   God bless, and take good care. Let us know how its going.