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!