Newly diagnosed - neuroendocrine tumor in intestines

Hello @cathyprince50

It has been a few weeks since you last posted. I was thinking about you and wondering how your daughter was doing with her treatments.

Also, the NETs support group will be meeting this Thursday, Feb. 2, via Zoom. I hope you can join the group.

Could you post an update when it's convenient for you?

Hello @peggymariejackson and welcome to the NETs discussion group at Mayo Connect. Given your family history of cancer, I can certainly understand your concern about your own NETs history. I have also had three surgeries for NETs in the upper digestive tract and like you, I also go to The University of Michigan. I have had no other treatment, however, just the surgeries.

Have you had any symptoms of carcinoid syndrome such as facial flushing, diarrhea, etc.?

You mentioned a medication with the ingredient of "secukinumab." Was this recommended by your oncologist or is it to treat another health condition?

I was diagnosed in 2021 of a NET in my stomach,Every 6 months to a year I have EGD done and Catscans and labs.I have had to have a EGD done they always fine polphs and almost everytime they come out as NET.
They scan to make sure it hasen't spread.I have not had any treatment just removing them.I have a good doctor at the University of Michigan Oncologist,He told me these type of cancer is not life threating and they do have an injection to help it from spreading .I am still scared I have alot of cancer in ancestory and siblings.My mom died from anal rectal cancer.They found my NET originally in Jume 2021 which was a EGD.I recently went on 1/5/2023 and they found 2 NET again.I have had at least 7 hemoclips all are gone except 3.I read a certain types of medications with the ingredients of secukinumab please give me feedback

Hello @cathyprince50

I'm so glad that you attended the online NETs support group meeting! The people in that group are very supportive and encouraging. I'm sure it is difficult for you to see your daughter so ill. "Heart-wrenching" is undoubtedly the right description.

Try to remember, that it takes at least six months to recover from surgery and since your daughter is also having chemo now, her recovery will be longer. I'm glad to hear that she has palliative help now. That will help her deal with the emotional and physical aspects of her condition.

Do you happen to know the name of the chemo that she is getting?

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.

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?

Hello Theresa. Can you tell me how serious a descending colon NET that has metastasized to the stomach lining and 83% (at least) to the liver. My daughter of 39 years was first diagnosed at the end of October.

Hello @kellywally and welcome to Mayo Connect and the NETs discussion group. I'm sure that you do have questions regarding the report where you read the "metastatic lesion." Have you previously had a diagnosis of NETs or other type of cancer? If so, where was it located?

If this is your first cancer diagnosis, would you share what symptoms you were having?

Why does report state metastatic lesion, does that mean tumor started elsewhere besides the adrenal gland?

They have done no lab work on the adrenal. All other blood work is good