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!

Hi @heidilynn4, I’m glad you found this group on Connect.

I’d like to introduce you to @hopeful33250 @gaylejean @lorettanebraska @joannem @wordnoid @tresjur @lucci50 @derekd @joanney @jenchaney727 @dzerfas and @wordnoid who can share with you their first-hand experiences with carcinoid cancer and the treatments they’ve had.

I can understand your concern about surgery only as a treatment plan, but don’t forget that your husband’s oncology will be “actively” watching. Should you wish to consider getting a second opinion at Mayo Clinic, here is the contact information http://mayocl.in/1mtmR63.

Hello @heidilynn4. I am sorry to hear of your husband’s surgery, How is he doing now? I have had three carcinoids (2003, 2005 and again in 2016). From my understanding surgery is the best approach and that is the only treatment I have had. I did have an Octreoscan in 2016, prior to the third surgery last year and it was clear so that was good news. I have not had the Sandostatin treatment, which from my understanding is only used for symptoms of carcinoid syndrome, however, I’m asking that some of our other members chime in and tell of their experiences with Sandostatin and when it was used. I do not see an oncologist, I just see a doctor at Univ. of Michigan who has special training in carcinoids for blood work on a yearly basis as well as a 24 hour urine test. I see another doc at Univ of Michigan who does the surgery. I have heard a lot about the Gallium 68. The NIH was doing some clinical trials with Gallium 68 and I looked into it last year but did not go much further than that. I would suggest that you check out the NIH website for clinical trials and see if that is still ongoing. You would have to travel to Bethesda MD, however, it might be good to take a look at it, if your husband is interested. i believe that you commit to several years of visits for follow up. I wish you well as you seek out answers, I know how trying this kind of diagnosis and surgery can be. Let us know how we can be supportive of you. I’m requesting that our other members, @gaylejean @lorettanebraska @joannem @wordnoid @tresjur @lucci50 @derekd @joanney @jenchaney727 @dzerfas and @wordnoid, share some from their experience with treatment and surgeries, as they feel comfortable. Best wishes to you and your husband. Teresa

I have been on sandostatin since sept 2014. After extensive surgery to remove carcinoids on large and small intestines, lymph nodes and O scan showed mets to liver and kidney, I was put on sandostatine. They would not have put me on sandostatin if there were no mets. even though the sandostatin has shrunk the mets so small the oscan can no longer detect them, I will be on sandostatin or some other carcinoid treatment for the rest of my life, cause once it has gotten into your lymph system, it will continue to spread but hopeful the treatment will keep it from growing back soon or growing elsewhere in my body. I’m in a good place now compared to where I was 2 years ago.

@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

@heidilynn4 I am in a similar situation, with only surgery so far and fearful other small tumors are being missed as I’m having Carcinoid syndrome and recent tumor markers came back positive but all scans are negative. I live in Texas but my doc in Kenner, Louisiana specializes in Carcinoid and has just began doing the Gallium 68. It’s hard to get scheduled due to low availability of the machine, so I’m not getting that scan until end of march at earliest. It was this group here who gave me that knowledge of the new scan, which is supposed to be better at detecting smaller tumors. Waiting to find more is the worse feeling. I would rather find it and address it head on! Hang in there! I suppose if they are too small to be found, then they are too small to be deadly, so that is a positive hope to hold on to.

Hi @jenchaney727, thanks for your response. You mentioned “carcinoid syndrome” since @heidilynn4 and her husband are new to this disorder could you explain what carcinoid syndrome is, what the symptoms are, etc. Also, @gaylejean @lorettanebraska @wordnoid @tresjur @lucci50 @derekd @joanney @dzerfas and @wordnoid, if you would like to add information as to what “carcinoid syndrome” is please feel free to do so. This has never been my experience, so I have to let you speak to it. Thanks! Teresa

@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!

@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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@jenchaney727 Great information, thanks for the explanation as to what carcinoid syndrome is in your situation. Also, good to know about EPI, I did not know about that. Teresa

@jenchaney727

@heidilynn4 I am in a similar situation, with only surgery so far and fearful other small tumors are being missed as I’m having Carcinoid syndrome and recent tumor markers came back positive but all scans are negative. I live in Texas but my doc in Kenner, Louisiana specializes in Carcinoid and has just began doing the Gallium 68. It’s hard to get scheduled due to low availability of the machine, so I’m not getting that scan until end of march at earliest. It was this group here who gave me that knowledge of the new scan, which is supposed to be better at detecting smaller tumors. Waiting to find more is the worse feeling. I would rather find it and address it head on! Hang in there! I suppose if they are too small to be found, then they are too small to be deadly, so that is a positive hope to hold on to.

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He has never had symptoms of carcinoid syndrome yet so we are hopeful there are no tumors in his liver, as I have read that you only experience carcinoid syndrome from primary illeum tumors if it has also spread to your liver, since the liver breaks down the excess hormones that the carcinoids produce unless it is affected too.  Good luck to you, I am hoping we can push Mayo to do a GA-68 scan too just for peace of mind, since it was found in his lymph nodes.

@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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Because of the possibility of carcinoid crisis due to epinephrine, I decided to wear a medical bracelet. It’s a six line bracelet that reads

MY NAME
CARCINOID SYNDRONE
NO EPINEPHRINE
OCTREOTIDE DRIP

I asked my oncologist if this would suffice and he asked, if possible, to add: CALL . So his name and number are on the 5th and 6th lines of the bracelet.

I first learned of the availability of the bracelets from the Carcinoid Cancer Foundation/Zebra Medical Bracelet, but at the time of my interest they had none. I googled med bracelets until I found one I liked and order from them.

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…

@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.

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

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 🙂

@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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