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@hopeful33250

Hello @cathyprince50 and welcome to Mayo Connect. I'm sorry to hear of your daughter's diagnosis. As you may know, here on Connect we are not medical professionals, just patients who support and encourage each other. Therefore, I cannot explain your daughter's diagnosis other than to say that she needs to address her concerns with her doctor.

I would encourage her to consult with a NET specialist. As you probably know, NETs are a rare form of cancer and not every oncologist is equipped to treat NETs. If you go to the Carcinoid Cancer Foundation, you can view Patient Resources and find information on specialists. Here is the link to the website, https://www.carcinoid.org/for-patients/

If you are comfortable with sharing more, what type of symptoms was your daughter experiencing when the diagnosis came about? Has she had surgery for the NET in the colon?

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Replies to "Hello @cathyprince50 and welcome to Mayo Connect. I'm sorry to hear of your daughter's diagnosis. As..."

Hello Theresa. Thank you for your interest in my daughter. I forgot to mention that my daughter was diagnosed with stage four colon cancer. During the Mayo Connect on Thursday evening I noticed that the contributors to the meeting were well spoken about living with their NETs. In august of 2022, my daughter thought that she had Crohn’s disease because of the pain and diarrhea she was experiencing. Her family doctor said that she could get a CT scan in several months. After attending at her family doctor three times she was eventually sent to the emergency department for a CT. That revealed a tumour on her descending colon. She had an emergency operation the next day and the tumour and perforated bowel were removed. The cancer had metastasized to the stomach lining and liver. It was a week later that the pathology results reported that she had a NET with carcinoid syndrome. The thirty-three week time line was very difficult on the family. Right now her quality of life is very poor and palliative help has just begun to step in. It is so heart wrenching to see my daughter suffering so much. I really appreciated listening to all the NETs people on the zoom meeting. The meeting was most helpful to me. Thank you again for listening to me recounting my daughters story. All the best to you all. P. S. She does appear to have a very good oncologist who specializes in NETs.