Hi - I'm new here, but not to Carcinoid Syndrome

Hi All. My mom passed away from Carcinoid Syndrome in 2005.  She had it for at least 8 yrs. She started losing weight & tested only about 9.6 on her 5HIAA & the ct scan & octreotide scans showed nothing. This was in 1997. She had all the classic syndrome symptoms all along. They failed to treat her. Then during a surgery in 2001, they found a carcinoid tumor in her lung. No one looked at the report showing they had found this tumor. She only found out when she went to get her records.  Then they sent her to an endocrinologist/oncologist.  When she passed, she only weighed 58lbs & she used to weigh 120lbs.

My brother tested positive (only slightly high 5HIAA) for carcinoid syndrome last year. And also an elevated CgA (not too high - I think about 110). Then he tested lower on his 5HIAA re-test so the oncologist said he didn't have it after all. He's lost 65lbs so far.    

Now, I've tested mildly elevated on my 5HIAA (9.7) & I have all the symptoms for carcinoid syndrome.  I've lost 20% of my body weight in the last 9 months (20lbs). I'm down to 100lbs. I have flushing, rapid heart rate, heart murmur, low bp - but it also fluctuates, night sweats, & I get sick when I eat certain foods, or try to drink any alcohol.

My ct scan shows reactive mesenteric lymph nodes with stranding, multiple lesions on my liver and an area of focal fat. They're sending me to see an oncologist/endocrinologist. I'm just afraid that the same thing will happen to me as my mom. They wont see any actual tumors per se, and then I won't get treatment. Help!

Thank you so much for any feedback.

-Kelly

Hi Kelly, I am sorry to hear that you and your family are facing this. I don't know if you have seen any of my previous posts, but I am one who has the syndrome, but my tumours are too small to show up; my urine 5HIAA has been constantly normal; my CgA slightly elevated, but then went back to normal range after I stopped PPI medication; my blood serotonin has been high half of the time, but the other half of the time normal. Several doctors doubted my diagnosis, including my oncologist, but the endocrinologist I saw trialled me on the Sandostatin injections which had a dramatic impact on all of my symptoms. When I go off the injections (e.g. for PET scan) the symptoms come back with a vengeance.

Then, just prior to Easter this year, my Mum went in for a biopsy of an ulcer in her small intestines. While the endoscope was shining through the wall of her small bowel the surgeon found 9 carcinoid tumours, as well as one positive lymph node. She will have a PET scan at the end of June to see if it has gone anywhere else. She did not have any symptoms apart from the pain of the ulcer. This has obviously caused concern within the rest of the family. My brother has complained for years about the same sort of pain I had before I was diagnosed, and I have a sister who is currently being tested.

Kelly, even if they can't find any tumours, they should at least start you on injections of Octreotide (I had Sandostatin brand) to minimize any heart damage and slow tumour progression. And they should not rule out your brother's risk either. If you would like me to send you some of the information I have collected over the past 2 years on difficult to diagnose carcinoids, then send me a private reply with your e-mail address.

You are both in my thoughts and prayers.

Blessings, Lauri.

Hi Lauri,  Thank you so much for responding. 

My brother even has nodules that they found in his lungs. They did a bronchoscopy to take a look a couple of months ago, but the doctor didn't do anything with them and just let them be since they were only 5 mm.  He said he was looking for a mass. I know that carcinoid tumors are small. The one my mom had in her lung was only 4mm. I think we're surrounded by idiots, or very uninformed doctors. It really irritates me, especially when the doctor's know what they're looking for - you'd think they'd do some research on it beforehand. 

On May 22, I'm going to see the same endo/oncologist my mom was seeing towards the end. I hope she keeps an open mind like you said. And maybe try something to treat the symptoms.  My primary care doctor just told me to eat more & when she got the results from my ct scan, she told me everything was fine. On top of that when she saw that my heart keeps racing, she said that it's nothing to worry about (I went to a cardiologist on my own & they also found a new murmur & had a racing heart from the holter monitor).  It's my rheumie that is sending me to the oncologist. And they're the ones who ran the 5HIAA test.

Thanks, Kelly 

Kelly,

You need to see a carcinoid SPECIALIST asap as it is possible to manage this cancer with a sound strategy that can include surgery & Sandostatin LAR.   I'm one of three immediate family member who have midgut carcinoid with metasosis to numerous organs.  That said, my mother is currently 85 years old and dealing with her carcinoid.....my brother and I are in our 50's and doing the same.  Carcinoid doesn't have to be a death sentence, but BE CERTAIN to see an EXPERT!!

Hi Mustameet,  Where has yours metastized too - to the mesenteric lymph nodes - to the liver?

I am surprised that now 2 others on this forum also have immediate family members with carcinoids. If I do have it, I think mine has metastized too, like my mom's. I know at least the mesenteric lymph nodes and perhaps the liver, since I probably have carcinoid syndrome.

If this doctor that I'm going to on 22 May isn't good, then I am considering trying to see one of the doctors in Kenner, Louisiana. Where I know they're specialists in it.

Thanks for the advice. 

Kelly,

All three of us had midgut primaries that had metastisized to the lymph nodes, liver invovlement confirmed for 2....likely for 3rd.  Mother and myself have rather extensive disease throughout abdominal cavity, pelvis area etc.  Bother had the midgut primary and liver involvement in both lobes.  We have all been diagnosed with carcinoid syndrome.  All have Postive O-scan, CT, MRI & clinical markers.

Hi Lauri

I had a carcinoid removed about 4 yrs ago and am now having slightly elevated CgA & 5HIAA.  Doctor is considering octreotide.  Could you send me the info you mentioned you had collected?  I would appreciate anything you have.  Thanx.

Carol