Neuroendocrine Carcinoma with Liver Metastasis
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.
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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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?
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.
Yes, it was.
It was in the ileocecal valve.
I can understand your concerns, @cassandrar4. How long ago was your surgery? Have you had a follow up appointment with the surgeon, yet?
Yes, ma'am, he referred me to the oncologist. The oncologist had me get a PET scan and an MRI
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?
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