Carcinoid Cancer-So confused!!

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Carcinoid Cancer-So confused!!

by mrspip08 on Tue Sep 09, 2014 05:54 PM

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Ok here goes...I am sooo confused and at a loss for my husband.  He has been sick off & on over the last two years with what we have been told is gastritis/gerd/acid reflux/espogial spasms/hiatel hernia and the list goes on and on...He has had these "fake heart attacks" about 6 times over the last year and a half (up until two weeks ago where they are now coming every few hours).  We called them fake heart attacks because they would simulate a heart attack.  he would turn beet red (only face & neck), have extreme pressure in his throat/chest area, trouble breathing, be extremely dizzy, bp would eithier raise or drop.  It is horrible.  We have been to the ER more then I can remember and they always do a cardiac workup (including an emergency catherization) and everything would come out fine.  They would tell him it was an espoghial spasm and send us on our way.  He is on Dexilant 60 mg a day for "stomach" issues and the dexilant does not work.  Like I said this has been going on for two years.  It wasn't until recently (august 2014) that things have changed.  Our son got admitted to the hospital for extreme dehydration where they discovered a pheocryoctoma.  He is scheduled for surgery on the 16th.  We had to switch family doctors (which has turned out to be a blessing).  Our new doctor started asking my husband quesitons and sent him for some blood work.  His seritonin level & gastrin level both came back high.  They just completeld the 24 hour urine which came back high but in the normal range (came back as a 5 and a 6 is considered high for 5HIPAA).  He has an octreotide scan on Thursday.  4 different doctors believe that he has carcinoid tumors & syndrome.  Family history:  His mom died of atypical carcinoid cancer that they believe originated in her thymus and metastisized.  She passed away in two weeks after diagnosis.  He has had CT scans over the last two years because of all the stomach issues.  I guess my questions are: 1.  Has anyone had a negative urine/blood work up yet still had carcinoid? 2.  Has anyone had all these symptoms?  3. Really just want opions.  So confused and so scared. 

RE: Carcinoid Cancer-So confused!!

by mrspip08 on Tue Sep 09, 2014 06:07 PM

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Also forgot to mention chronic diarrhea for 2 years..honestly probably goes 8 times a day. and even looses control sometimes.  He did have his gallbladder out in Feb 2013 because they thought that was causing all the pain (the pain is in his left side going around his back under rib area and on his upper back right side by shoulder area).

RE: Carcinoid Cancer-So confused!!

by mrspip08 on Tue Sep 09, 2014 06:07 PM

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Also forgot to mention chronic diarrhea for 2 years..honestly probably goes 8 times a day. and even looses control sometimes.  He did have his gallbladder out in Feb 2013 because they thought that was causing all the pain (the pain is in his left side going around his back under rib area and on his upper back right side by shoulder area).

RE: Carcinoid Cancer-So confused!!

by lolis33 on Wed Sep 10, 2014 02:58 AM

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Sorry, mrspip08 your sweetheart is in all this pain and disruption.  Just some questions:

*Has your husband seen a gastroenterologist? Under this physicians care some procedures could be done to possibly answer some questions. 

*Procedures that may help: colonoscopy, upper endoscopy, blood lab for H-Pylori and capsule endoscopy.

I hope you can find answers soon and perhaps alittle of this information will help.  Keep us posted.  God bless you both.

RE: Carcinoid Cancer-So confused!!

by mrspip08 on Wed Sep 10, 2014 12:30 PM

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On Sep 10, 2014 2:58 AM lolis33 wrote:

Sorry, mrspip08 your sweetheart is in all this pain and disruption.  Just some questions:

*Has your husband seen a gastroenterologist? Under this physicians care some procedures could be done to possibly answer some questions. 

*Procedures that may help: colonoscopy, upper endoscopy, blood lab for H-Pylori and capsule endoscopy.

I hope you can find answers soon and perhaps alittle of this information will help.  Keep us posted.  God bless you both.

lolis33 Thank you for replying.  We have an appointment scheduled with Dr. David Metz of HUP on October 1st.  Without a definate diagnosis they can't get him in earlier.  He is actually having the octreotide scan tomorrow.  He just got back from being injected.  He has had an upper endoscopy (actually 3 of them) over the last two years. Three different doctors thought he had barret's because of the discolor and shape of the bottom of his esphogus however when they did a biopsy for barrets it was negative for barrets.  He was also negative for H-Pylori & celiacs. I am just scared that the doctors up here (who fully admit they know nothing about carcinoid) won't find it or will overlook it because they don't know what to look for or do. 

RE: Carcinoid Cancer-So confused!!

by peggyznd on Wed Sep 10, 2014 07:28 PM

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Just a quick searchonline brought me to this page, with several other resources.  I would start with the ACOR group, as the kidney cancer version from early ACOR days was invaluable. 

http://www.carcinoid.org/content/online-support-and-discussi

As hard as it is to deal with the thought of cancer, it is far better to know what you are up against, as it becomes a more fair fight!

RE: Carcinoid Cancer-So confused!!

by Tristate on Wed Sep 10, 2014 09:16 PM

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My endoscopy, colonoscopy, and 5HIAA were all normal. I did swallow a pill (camera) and they got a general idea where my carcinoid tumor started. The octreotide scan and liver biopsy gave the final answer of carcinoid. Now I am being monitored with CT scans, gastrin and chromogranin A levels. Your new doctor sounds like he is on the right track. Hope you get answers soon and that life will improve for your husband with treatment.

 

RE: Carcinoid Cancer-So confused!!

by Canderson on Wed Sep 10, 2014 10:07 PM

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Have they rescreened (MRI)  to see if there was still a gallstone that they may have left behind?  My daughter had pain after her gallbladder surgery for sometime.  Dr. said that there was a possibility that there was a gall stone left behind.   Good luck.

RE: Carcinoid Cancer-So confused!!

by beingcelestial on Thu Sep 11, 2014 02:38 AM

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Hi mrspip08, I see Dr. Metz at HUP. I am originally from Phila. and now live in Bucks co. Are you in the area? There is a seminar (I am not sure of the date, it may have passed) that HUP sponsored at the Hilton on City Ave. It is very informative. If you have not done so already, as was suggested previously, register in the www.ACOR.org site (carcinoid/neuroendocrine group). If you post your questions specifically to Dr. Gene Woltering (in the subject box) he will respond. His mother has carcinoid. He lists his office and cell phone numbers for you to call him, even though you/your husband has not seen him, nor is a patient of him. I suggest you register in a few carcinoid groups: the www.carcinoid.org is an extremely informative site. There are some great closed/private Facebook groups. One is Zebra Zone. You will have to be invited to join by emailing the administrator or by giving me your email address to pass to the admin. Also go on the www.InterscienceInstitute.com site to order a free copy of their book Neuroendocrine Tumors, A Comprehensive Guide to Diagnosis and Management. They list the codes, tests, symptoms of all kind of NETs and carcinoids. You can call ISI and ask to speak to Mia. She will guide you with insurance and codes and blood tests. Do not use Cambridge. If you are local to HUP, use LabCorp and ISI, not Quest. FYI, there is a 5HIAA plasma test that is fairly new but much more convenient to do rather than collecting and storing 24 hours urine. There are other scans, tests and procedures that can be performed as well as octreo scans. Some NETs/carcinoid do not show up on certain scans because they do not give off hormones. Start a binder with clear plastic protectors to store copies of resports/results of tests procedures, etc. Bring it with you to the appointments. If you would like, I would be glad to meet you or message privately. Prayers!

RE: Carcinoid Cancer-So confused!!

by beeb333 on Sat Sep 13, 2014 05:19 PM

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Beingcelestial has given you great information! My personal experience is "text book" (doctor's words) symptoms of carcinoid for years. Flushing, diarrhea, BP swings, weight loss, drenching night sweats, weakness etc....All of my labs and scans were negative. This went on for 7 years. I was going from doctor to doctor and most of them kept telling me there was nothing wrong with me. In the meantime my health kept deteriorating. I was able to get an appointment with a NET specialist who diagnosed me with Carcinoid Syndrome and started me on the Octreo injections. Once I started them, I immediately felt relief. The symptoms I had suffered with for years were now under control. I still have significant pain that I am dealing with but I have made great progress. My NET doctor told me there are many patients like me. I have already met several who have found relief from the injections but their labs and scans are normal. My doctor also believes my dad had this. He is deceased but did suffer from chronic diarrhea which caused him to be home bound, flushing, eventual diabetes, pituitary tumor and several other symptoms that went undiagnosed. When this first started for me I also went to the ER on 2 different occasions because I thought it was my heart. I was also on Dexilant and it never worked for me. I didn't get a gastrin level early on but an upper endoscopy revealed that the lining of my stomach looked like a sunburn. Those were the doctor's words. (not the NET specialist) Instead of following up with that he told me I probably caused that by worrying about what is wrong with me. I wasn't a worrier, I just wanted some answers. Getting to a NET specialist was a gift for me. I have heard good things about Dr. Metz. I actually have a friend who is scheduled to see him soon. She is going through the same issues with no diagnosis as of yet. I hope he is able to help you. Please let us know.
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