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.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 15, 2022

In reply to @sharond1956 "I replied but not sure if I posted correctly. Thx" + (show)

Hi @sharond1956

You posted correctly. I'm glad that you will search out a NET specialist for your SIL. I hope that she gets some expert help for this situation and that you find the right NET specialist.

Will you post an update and let me know how she is doing (especially after her appointment on Wednesday)?

sharond1956 | @sharond1956 | Oct 16, 2022

In reply to @hopeful33250 "Hi @sharond1956 You posted correctly. I'm glad that you will search out a NET specialist for..." + (show)

Most definitely will post with follow up. Thank you!

carrie55 | @carrie55 | Oct 25, 2022

In reply to @keeper3102 "Hello, Carrie, My name is Lucy and I'm having my first surgery this month on the..." + (show)

@keeper3102
Hi Lucy! I’m sorry I just saw your message now. Yes I’ll add you to my prayer list too! How did your surgery go? You would be on post-op day 5 now I guess. I sure hope you’re in not too much pain. I just found out that my chemo is not working so I meet with my Oncologist on Friday (28th Oct) morning. I’m sufficiently terrified because it’s now begin to cause pain. In answer to your question regarding the hormones, I really don’t know. All I know is that I’m heeding the warnings I’ve read about to stay away from processed foods. However my doctor and team have told me to enjoy whatever I can enjoy. I am terminal and likely don’t have too much longer. I hate to leave my husband and teenage boys behind. It breaks my heart daily. I guess I’ll find out Friday if there’s anything else they can do for me. Surgery on my liver is out. I don’t qualify for a transplant so not sure if they have a small miracle for me or not. - Carrie

maria957 | @maria957 | Oct 25, 2022

Hi, I am Maria from Argentina. My best friend was diagnosed with neuroendocrine small cell cancer, located in the cervix i believe. She was OK, but now has metastasis in bones and liver.
We are seeking for a last chance with immunotherapy. I read there is an option for better life quality abd survival rate.
I am a biologist helping her. Wonder if your oncoligist has mentioned this option.
Thank in advance
Maria

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maria957 | @maria957 | Oct 27, 2022

In reply to @hopeful33250 "@keeper3102 Hi Lucy and welcome to Mayo Connect. I wish you well as you anticipate surgery..." + (show)

Thank you some much for posting the video! Gave me a lot of answers. I am from Argentina and mu best friend has Cervix NET. Did chemo and radio in 2020, now she has metastastis in liver and bones, 2022. Not sure what road to take, but her family opted for better life quality than survival rate.
I think this is the best decision, as she has grade 3 tumor. Her financial status is poor, so better to spend in life quality.
I learned about her new condition Monday and I am a feel very sad.
Wishing the best to you all!

Teresa, Volunteer Mentor | @hopeful33250 | Oct 27, 2022

In reply to @maria957 "Thank you some much for posting the video! Gave me a lot of answers. I am..." + (show)

@maria957

I am so glad the video was helpful to you in understanding this rare disorder. I'm sorry that your friend is so ill with metastasis. She must be in a great deal of pain.

Is there palliative care for her in Argentina?