Carcinoid Syndrome-Neuroendocrine Tumors

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jimtumor Message: Carcinoid Syndrome-Neuroendocrine Tumors Patient jimtumor Recommend this Message Report Abuse Email a Friend Track this Message [Remove] Subject: Carcinoid Syndrome-Neuroendocrine Tumors Date: 09/20/2007 Hi to all fellow patients, For about a year and a half, I thought I had IBS, systematic dietary problems I suffered whenever I ate, but after an eighty lb. weight loss, the smart doc ordered a CT, two CT guided biopsies, then a Nuclear Octreoscan with radioactive isotopes (tumor specific) which showed a mass and twenty-three lymph nodes in my right lower quadrant intestinal tract which they found three were NET ( neuro endocrine )cancerous nodes. The mass was a bowel obstruction. Last October they performed a Right Hemi-Colectomy (resection) and Retroperitoneal exploration and removed about 18 inches, including my appendix, right colon, distal ileum, and the duodenal serosal margin.. pretty much everything on the right side, and then some. Since the operation I have had no flushing, but diarrhea. It's not the feeling complete while I go, but feels like it comes out, then I feel constipated, I move around on the toilet then more comes out...(sorry about the visual) I do this about 6-8 times a day and night. They have given me Cholestyramine as a binder, Lomotil, and Imodium, but nothing seems to be working. They simply said that this is a result of having the Carcinoid syndrome. Last week I had another Octreoscan, and also a EUS rectal ultrasound with biopsies, and the scan showed yet another tumor adjacent to the seminal vesicles, anterior to the rectum, and another possible Carcinoid tumor. This tumor could pop up anywhere as we know from previous posts. My oncologist mentioned she would put me on Sandostatin injections, but she said and I have read that these will not shrink the tumor, it will only help with my diarrhea. The doc also said that since this location with the tumor is not a text book case, that he would have to confer with the GI,Colorectal and general surgeons, Oncology, Tumor Board Think Tank to see if the tumor should be removed. Given the location of the tumor this time, I would hate to think they would have to try to mess with the rectum without performing some type of Ostomy, personally,and medically, I don't know for sure, they told me not to think about that yet, but it's always' in the back of my mind that something can and could always go wrong during surgery. I am praying that this is not the case for me. I am human afterall. :-) I have a CT scan next Friday Oct. 5th. Thanks for reading my story, I'm sure I will have more. Also, I wanted to know since I am a Carcinoid Neuro Endocrine patient, is there any special diets I should be adhering to? I would think the doc would set me up with a nutritionist. Thanks! Take care! Private Reply Quote Reply to This Message Live4him Message: RE: Carcinoid Syndrome-Neuroendocrine Tumors Patient Live4him Recommend this Message Report Abuse Email a Friend Track this Message [Remove] Subject: RE: Carcinoid Syndrome-Neuroendocrine Tumors Date: 10/12/2007 You will find alot of information about nutrition on the Carcinoid Foundation Website. There are alot of foods that will aggravate the carcinoid syndrome and cause flushing. I do not know where you live or who is treating you, but from personal experience I would recommend that you see a specialist that treats neuroendocrine tumors. There are not a lot of them as you will find when you research this. I am being treated by Dr. Woltering, Dr. Boudreaux and Dr. Wang in Kenner LA. I had surgery about 6 weeks ago. My primary was not identified until surgery and my small intestine was resected, gall bladder removed and a portion of my liver resected. My local doctors were telling me that they wanted to just wait and see because this is such a slow growing cancer, but I have a new baby and wanted to treat as aggresively as possible. I was also told that I was not a candidate for surgery by local surgeons. I have been taking Sandostatin for several months now and I encourage you to really research this because that is usually a first line treatment. I will make a huge difference if you are suffering from carcinoid syndrome (flushing/diarrhea). There is research that says it does not shring the tumors but I have also read that it may slow the growth. However it was worth the risk for me. I am taking sandostatin LAR 30mg every three weeks. I am feeling great since surgery. My surgeon thinks that maybe one more surgery to the liver and I will be disease free. I encourage you to research and educate yourself as much as possible and pray pray pray. There are also several carcinoid support groups - I would encourage you to get in touch with one in your area. They are really encouraging and meeting people that are going through or who have gone through where you are is very helpful.. Thanks Keith Private Reply Quote Reply to This Message
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