1. < Neuroendocrine Tumors (NETs)

My Husband was newly diagnosed with Carcinoid Cancer

Posted by heidilynn4 @heidilynn4, Feb 13, 2017

My husband was diagnosed with carcinoid on 1/18/17. He had surgery on 2/3/17 to remove 18" of his ileum small intestine (36 small tumors were found), appendix (no carcinoid per the pathology report) and a 5cm carcinoid tumor in the mesentery. They also removed 23 lymph nodes, but only 2 had carcinoid per the pathology report. His surgeon at Mayo did not see any carcinoid spots on his liver per the CT scan, so they are not starting him on octreotide, etc.
They also said that the margins were good on the pathology report, so they don't think he has widespread disease.
The only follow up right now is a CT scan and chest xray on May 1st, which is 3 months after his surgery. Should I push to have an Octreoscan or a GA-68? No appointment with an Oncologist has been scheduled either. Does anyone have a name of an Oncologist at Mayo who specializes in Carcinoid?
Has anyone else had surgery only with no treatment and had the Carcinoid not come back? Nervous about not doing the Sandostatin in case there are smaller tumors that aren't showing up on the CT scans.
Thanks for your help!

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wordnoid | @wordnoid | Feb 14, 2017

My experience is rather like your husband's only many less tumors found during surgery. I have never had carcinoid syndrome and am not having it now (small bowel resection and diagnosis were in Dec 2015). My local oncologist also did not see a need to do anything after the surgery and I had a normal CT scan so that seemed reasonable, but the symptoms I had before the surgery and subsequent diagnosis never went away!! So I requested a referral to a NET specialist out of state, met with him, he recommended ga-68 scan and that showed diffuse uptake but no tumors. He also recommended a pancreastatin test. It was >350. Based on those two findings NET guy said I should try Sandostatin. If it works, he said, We will know. Symptoms mostly went away overnight and pancreastatin levels plummeted back down again. So... I am the poster child for "symptoms count..." and I would definitely get a pancreastatin check...

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4 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 14, 2017
In reply to @jenchaney727 "@hopeful33250 , @heidilynn4 , sure happy to explain my experience with Carcinoid Syndrome. It was actually..." + (show)
@jenchaney727

@hopeful33250 , @heidilynn4 , sure happy to explain my experience with Carcinoid Syndrome. It was actually these symptoms that prompted me to get MANY tests that ultimately found my first tumor in my Ilium colon. I was having SEVERE watery diarrhea. I had always had IBS my entire life, but this was different. All blood and fecal tests and scans negative, so demanded the colonoscopy where they luckily found the little guy hiding. Carcinoid syndrome is different for everyone. Right now, I'm not having so much of the watery diarrhea, but am having severe flushing episodes where my chest and face/ears turn red and I have dry heat (no sweating). Foods and emotions mainly trigger it for me, and I had a very bad scare at dental office few weeks ago where they gave me novacaine with Epinephrine in it. It sent my blood pressure through the roof, very red flushing and literally thought I was having a heart attack. This is known as Carcinoid Crisis, which I was NOT aware of until speaking with my doctor last week. Turns out Epinephrine is VERY bad for Carcinoid patients as it has contraindications to usual patients. Say NO EPI when docs ask what drugs you are allergic to!

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Thanks! @tresjur I appreciate your entering the discussion. The medical bracelet is a great idea.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 14, 2017

Thanks for entering the discussion @wordnoid. I'm sure that @heidilynn4 and her husband appreciate all the info provided by you, @tresjur @jenchaney727 and @joannem. You have been a great help. I have one question, you mention a pancreastatin check. What exactly does this check for! Thanks again to everyone for welcoming our new member! Teresa

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wordnoid | @wordnoid | Feb 14, 2017

The specialist I saw at Iowa, Dr Dillon, is in the same clinic as the Drs. O'Dorisio -- this is the team that found pancreastatin levels to be a better prognosticator than the other things people check for (Chromagranin A, HIAA, etc.) -- here's an article free online that describes their research into this particular marker--
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4125469/
They write: "Higher pancreastatin levels are significantly associated with worse PFS and OS in SBNETs and PNETs. This effect is independent of age, primary tumor site, and presence of nodal or metastatic disease. Pancreastatin provides valuable prognostic information and identifies surgical patients at high risk of recurrence who could benefit most from novel therapies."

So I guess you could say I was getting this advice from the experts 🙂

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heidilynn4 | @heidilynn4 | Feb 14, 2017
In reply to @wordnoid "My experience is rather like your husband's only many less tumors found during surgery. I have..." + (show)
@wordnoid

My experience is rather like your husband's only many less tumors found during surgery. I have never had carcinoid syndrome and am not having it now (small bowel resection and diagnosis were in Dec 2015). My local oncologist also did not see a need to do anything after the surgery and I had a normal CT scan so that seemed reasonable, but the symptoms I had before the surgery and subsequent diagnosis never went away!! So I requested a referral to a NET specialist out of state, met with him, he recommended ga-68 scan and that showed diffuse uptake but no tumors. He also recommended a pancreastatin test. It was >350. Based on those two findings NET guy said I should try Sandostatin. If it works, he said, We will know. Symptoms mostly went away overnight and pancreastatin levels plummeted back down again. So... I am the poster child for "symptoms count..." and I would definitely get a pancreastatin check...

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What kind of symptoms were you having?

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wordnoid | @wordnoid | Feb 15, 2017
In reply to @wordnoid "My experience is rather like your husband's only many less tumors found during surgery. I have..." + (show)
@wordnoid

My experience is rather like your husband's only many less tumors found during surgery. I have never had carcinoid syndrome and am not having it now (small bowel resection and diagnosis were in Dec 2015). My local oncologist also did not see a need to do anything after the surgery and I had a normal CT scan so that seemed reasonable, but the symptoms I had before the surgery and subsequent diagnosis never went away!! So I requested a referral to a NET specialist out of state, met with him, he recommended ga-68 scan and that showed diffuse uptake but no tumors. He also recommended a pancreastatin test. It was >350. Based on those two findings NET guy said I should try Sandostatin. If it works, he said, We will know. Symptoms mostly went away overnight and pancreastatin levels plummeted back down again. So... I am the poster child for "symptoms count..." and I would definitely get a pancreastatin check...

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Pretty much constant nausea; extreme, debilitating fatigue; right sided abdominal pain. First two went away after my first shot. Thry came back this month so I am going to ask them to up the dose, which they started pretty low...

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jenchaney727 | @jenchaney727 | Feb 15, 2017
In reply to @wordnoid "My experience is rather like your husband's only many less tumors found during surgery. I have..." + (show)
@wordnoid

My experience is rather like your husband's only many less tumors found during surgery. I have never had carcinoid syndrome and am not having it now (small bowel resection and diagnosis were in Dec 2015). My local oncologist also did not see a need to do anything after the surgery and I had a normal CT scan so that seemed reasonable, but the symptoms I had before the surgery and subsequent diagnosis never went away!! So I requested a referral to a NET specialist out of state, met with him, he recommended ga-68 scan and that showed diffuse uptake but no tumors. He also recommended a pancreastatin test. It was >350. Based on those two findings NET guy said I should try Sandostatin. If it works, he said, We will know. Symptoms mostly went away overnight and pancreastatin levels plummeted back down again. So... I am the poster child for "symptoms count..." and I would definitely get a pancreastatin check...

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Sorry to ask for more specifics, but when you say right sided abdominal pain, is it in the upper quadrant (like under/behind the upper ribs), like the gallbladder/liver area? or more in the side/stomach area? I'm asking, because my upper right quadrant pain is one of the severe symptoms that we still aren't sure is related or not. I've had many gallbladder scans, including two HIDA scans and the only thing they found was a higher than usual ejection fraction rate (mine runs from 82-89% whereas normal is closer to 35-65%), so that rate might explain the pain, but nothing conclusive. Definitely not gallstones.

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gaylejean | @gaylejean | Feb 15, 2017
In reply to @hopeful33250 "@joannem Thanks for sharing your treatment story with @heidilynn4. How about the rest of our NET..." + (show)
@hopeful33250

@joannem Thanks for sharing your treatment story with @heidilynn4. How about the rest of our NET group? I'm tagging @gaylejean @lorettanebraska @wordnoid @tresjur @lucci50 @derekd @joanney @jenchaney727 @dzerfas and @wordnoid. If you are comfortable doing so, please share any treatments that you have had (surgeries, Sandostatin, etc.) with our newest member. As we all know, we can be encouraged by the support of others who have walked this road. Thanks to all of you for your kind support for one another! Teresa

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Since my diagnosis in 2002 at Mayo Clinic, I have had surgery to remove appendix, gallbladder, resection of my terminal ileium and right hemicolectomy (all in one surgery in 2008). After this I was started on Sandostatin and have been getting this injection every 28 days. I started on 20 mg. and have gone to 30 mg. recently. I have never had an octreoscan. I have blood work and CT scan and sometimes an MRI and a 24-hour urine collection about every 6 months. At diagnosis, I already had lymph node and liver mets and numerous small carcinoids in my large intestine - too numerous to remove. I can't say that I have had many "sick" days. I do have some trouble with diarrhea and gas and occasional flushing. I was hospitalized once for dehydration after a bout of the flu. About a year ago, a couple of tumors have shown up in my lungs. No one would know what I "carry" with me every day. I just take one day at a time and am grateful for every one.

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gaylejean | @gaylejean | Feb 15, 2017
In reply to @wordnoid "My experience is rather like your husband's only many less tumors found during surgery. I have..." + (show)
@wordnoid

My experience is rather like your husband's only many less tumors found during surgery. I have never had carcinoid syndrome and am not having it now (small bowel resection and diagnosis were in Dec 2015). My local oncologist also did not see a need to do anything after the surgery and I had a normal CT scan so that seemed reasonable, but the symptoms I had before the surgery and subsequent diagnosis never went away!! So I requested a referral to a NET specialist out of state, met with him, he recommended ga-68 scan and that showed diffuse uptake but no tumors. He also recommended a pancreastatin test. It was >350. Based on those two findings NET guy said I should try Sandostatin. If it works, he said, We will know. Symptoms mostly went away overnight and pancreastatin levels plummeted back down again. So... I am the poster child for "symptoms count..." and I would definitely get a pancreastatin check...

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When I had surgery they took out my gallbladder as a preventative because I understand that with NET you will eventually have gallbladder problems.

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