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Daisy17's Message Board Messages

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This cancer is damn hard to figure out! My husbands blood work came back good except one thing. I think it was called Cdx2? So for us it was the biopsy and scans and they barely found anything. After a CT, MRI, colonoscopy, endoscopy, capsule endoscopy, it was the octreotide scans that found 1 2cm tumor in his liver and one enlarged lymph node in his mesentery. Next stop, exploratory laparoscopic surgery where they expect to find more tumors. He is scheduled for a bowel resection and hemicoloctomy and to burn the tumor in his liver...depending on what they find. The only symptoms my husband has is fatigue, chills, and constipation. If you’re having all those symptoms they’ve got to be missing something. Keep pushing!

Neuroendocrine cancer intestines liver

by Daisy17 - September 14 at 1:16 PM

Hi. I’m new and having trouble finding anyone to talk to about my husband’s cancer. He is 57 and works construction. He began having pains that relate to inguinal hernia. Had a CT, no hernia but small mass in liver. After MRI, they did a biopsy and confirmed a 2cm stage 2 well differentiated NET. Then told us that there is more cancer somewhere in his intestines. After colonoscopy/endoscopy, capsule endoscopy, and octreotide scan they finally found the area in the intestines. All they see is an enlarged lymph node so far. Very hard to find. The only symptoms he has is groin pain, chills, fatigue. He is very constipated but that is his norm. The plan...exploratory surgery, bowel resection, hemicoloectomy, and burn the small one in his liver. The surgeon said he will cut it out and we will be done. No more cancer, just scans for the rest of his life. Of course, we will have to see the Oncologist again for his opinion on that after surgery. Could it really be that simple? Or are they just making sure our stress levels aren’t debilitating? I’m hopeful because the surgeon said the liver tumor is easy and because after ALL those tests they only found one tiny area enlarged in the mesentery. I know there are at least one or more tiny tumors in the intestines and the surgeon said he will find them. My worries...if it metastasized to his liver, even if it’s only one tiny one, he is still in stage 4. If it metastasized through blood or lymph nodes then couldn’t there be more than what they’re saying. The facts...after ALL those tests, only 2 small areas were seen. Thoughts? And thank you for listening.

RE: What type of specialist did you see?

by Daisy17 - September 14 at 1:10 PM

Piobaire, after my husband’s biopsy came back positive our GP set us up with an oncologist who set us up with a gastroenterologist. His cancer is in his intestines with 1 liver NET. It pretty much snowballed after that. Before we knew it we had 7 doctors and 3 radiologists. We were going to a local hospital and those doctors set us up with a specialist about an hour and a half away. We also had slides and scans evaluated by our pick of doctors and everyone is in agreement. Keep in mind we have been in this process for 3 1/2 months and 7 different scans and 3 sets of blood work. If your GP is no help, I would look for an oncologist who has dealt with NETs. He can tell you the next steps. Good luck and God bless.

RE: Neuroendocrine Cancer Colon Liver

by Daisy17 - September 14 at 12:54 PM

Janey, yes 2nd, 3rd, 4th opinions and then some. After surgery the oncologist decides on further treatment, but they (several doctors) say that if they get it all during surgery then just scans for the rest of his life. I guess we won’t know until they get in there. We were told by several doctors that chemo doesn’t work on slow growing NETs. They also said PET test not the best for neuroendocrine cancer. The Octreotide Scan is where they finally found 1 enlarged lymph node in his mesentery. Still haven’t located any tumors. But his team of doctors and the tumor board all agree on exploratory surgery where they are sure they’ll find it. I guess it’s just confusing for him to be classified stage 4 due to 1 liver NET, but see almost nothing on CT, MRI, colonoscopy, endoscopy, capsule endoscopy AND octreotide scans. 1 more week and we’ll know. The waiting and wondering is so hard. Thanks for your response. Best to you also.

RE: Neuroendocrine Cancer Colon Liver

by Daisy17 - September 14 at 12:31 PM

I guess we’re lucky. University of Florida teaching hospital. We’ve got one of the best conservative cancer surgeons out there. He has a team of 7 doctors/specialized radiologists and every case has to go before the tumor board before surgery is agreed upon and scheduled. Keep looking for doctors you’re comfortable with.

Neuroendocrine Cancer Colon Liver

by Daisy17 - September 11 at 12:08 PM

Hi. I’m new and having trouble finding anyone to talk to about my husband’s cancer. He is 57 and works construction. He began having pains that relate to inguinal hernia. Had a CT, no hernia but small mass in liver. After MRI, they did a biopsy and confirmed a 2cm stage 2 well differentiated NET. Then told us that there is more cancer somewhere in his intestines. After colonoscopy/endoscopy, capsule endoscopy, and octreotide scan they finally found the area in the intestines. All they see is an enlarged lymph node so far. Very hard to find. The only symptoms he has is groin pain, chills, fatigue. He is very constipated but that is his norm. The plan...exploratory surgery, bowel resection, hemicoloectomy, and burn the small one in his liver. The surgeon said he will cut it out and we will be done. No more cancer, just scans for the rest of his life. Of course, we will have to see the Oncologist again for his opinion on that after surgery. Could it really be that simple? Or are they just making sure our stress levels aren’t debilitating? I’m hopeful because the surgeon said the liver tumor is easy and because after ALL those tests they only found one tiny area enlarged in the mesentery. I know there are at least one or more tiny tumors in the intestines and the surgeon said he will find them. My worries...if it metastasized to his liver, even if it’s only one tiny one, he is still in stage 4. If it metastasized through blood or lymph nodes then couldn’t there be more than what they’re saying. The facts...after ALL those tests, only 2 small areas were seen. Thoughts? And thank you for listening.
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Other Cancer

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