Neuroendocrine Carcinoma with Liver Metastasis

Posted by carrie55 @carrie55, Sep 23, 2022

So first of all Hi! I’m Carrie and live in Alberta Canada. Just diagnosed and started chemotherapy for my cancer that started in my bowels and metastasized into into my liver. The doctors say I’m terminal but won’t give me a timeline. Is this normal? And I have another question: are NETS the same as Neuroendocrine Carcinomas? This is what they tell me I have in my liver now.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome, @estrellita1. I moved your question about neuroendocrine tumor spreading to the liver to this related discussion in the NETs support group:

- Neuroendocrine Carcinoma with Liver Metastasis https://connect.mayoclinic.org/discussion/neuroendocrine-carcinoma/

I did this so you can click the link and read previous posts and connect with other members like @tomrennie @amygirl @kaiulani @sophiarose and others.

Estrelita, what treatment is suggested for your husband? How are YOU doing?

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So sorry to reply in septembre i ve been very busy with my husband and i do not have the habit to contact foreing people in this matter, the treatment was 1 octreotide per month since 2020 and this august they decided to put 1 octreotide every 21 days and to have 1 pill every day called Everolimus, reading the reply of vinnie694 i will ask the doctor if is possible to make radiation treatment to my husband but he is very thin 55kgs thanks

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Profile picture for cassandrar4 @cassandrar4

Hello, my name is Cassandra, and I have been diagnosed with a neuroendocrine tumor. However, this is new and scary to me. They said that it has spread to the lymph nodes and liver. I am so hurt because it seems like it happened so fast. I feel lost but I know my God has me.

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Hello @cassandrar4 and welcome to the NETs group. It is understandable that you feel lost. There are good treatments available now for NETs. Is your neuroendocrine tumor in your digestive tract?

Has your medical team suggested a treatment plan yet? What is your most difficult symptom now?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @cassandrar4 and welcome to the NETs group. It is understandable that you feel lost. There are good treatments available now for NETs. Is your neuroendocrine tumor in your digestive tract?

Has your medical team suggested a treatment plan yet? What is your most difficult symptom now?

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I'm so lost and scared! I have taken a PET scan and an MRI. It's suspicious for a lesion on my liver however they said on the last MRI that one area was not a good picture. They didn't tell me anything until after the surgery but it had spread from the distant part.

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Profile picture for cassandrar4 @cassandrar4

I'm so lost and scared! I have taken a PET scan and an MRI. It's suspicious for a lesion on my liver however they said on the last MRI that one area was not a good picture. They didn't tell me anything until after the surgery but it had spread from the distant part.

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Yes, it was.

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In reply to @cassandrar4 "Yes, it was." + (show)
Profile picture for cassandrar4 @cassandrar4

Yes, it was.

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It was in the ileocecal valve.

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Profile picture for cassandrar4 @cassandrar4

I'm so lost and scared! I have taken a PET scan and an MRI. It's suspicious for a lesion on my liver however they said on the last MRI that one area was not a good picture. They didn't tell me anything until after the surgery but it had spread from the distant part.

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I can understand your concerns, @cassandrar4. How long ago was your surgery? Have you had a follow up appointment with the surgeon, yet?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

I can understand your concerns, @cassandrar4. How long ago was your surgery? Have you had a follow up appointment with the surgeon, yet?

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Yes, ma'am, he referred me to the oncologist. The oncologist had me get a PET scan and an MRI

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Profile picture for cassandrar4 @cassandrar4

Yes, ma'am, he referred me to the oncologist. The oncologist had me get a PET scan and an MRI

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I'm glad to hear that you are being referred to an oncologist for follow-up, @cassandrar4. Will you post again with any concerns, questions, or updates?

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Profile picture for lagunagrl @lagunagrl

My NET story is similar to yours--small intestines metastasized to liver. I get the same monthly shots as well, but haven't heard about Lutathera. Are you in the US? I work with an oncologist who specializes in NETs, but she's never mentioned it. I'll ask her about it after my upcoming scan. When you wrote that you don't feel any different physically from the time you were diagnosed, are you feeling good or fatigued or? I was diagnosed in fall 2024 and fatigue seems to be a big factor for me. Deep fatigue. Take care.

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Hello, Im Vicki and my story is similar. I started out in lower intestines om 2020 and had surgery to remove from intestines. l'm guessing you may have been pretty sick when diagnosed, I know I was. The good news is after about a year or so on the injections I do pretty good. As mentioned by others fatigue is dominating sometimes but not always. I had a hard time staying awake, even while driving unfortunately. Doc put me on Ritalin and that helps some. The other unpleasant part is there are no more breaks from scans and Dr visits. I just made it to every 3 months and thats quite and improvement. Most of the time I feel fortunate that I can get around and do the things I can. When I go to the hospital and see what others go through I really feel fortunate.
I have those little nets crawling around in my liver and am due for a scan in november. I get MRI's as they show the liver activity better. Last scan didn't show any growth.
I keep my hands busy and focus on that. Beats thinking about cancer. Hang in there

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