Neuroendocrine Carcinoma with Liver Metastasis

We won’t know until this Wednesday any additional info. But we are not happy with the dr we are seeing and, thx to you sharing the video, we are going to search out a specialist. I really was not aware of net specialty. Our dr here is not encouraging at all and we dread going to her month after month. I will keep you updated as we go, but I thank you so much for the info and encouragement in this group! I’m so glad I found you

@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

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!

@keeper3102
Hi Lucy and welcome to Mayo Connect. I wish you well as you anticipate surgery on the 20th of October. I hope that all goes well for you. You ask good questions related to understanding more about NETs. From my own personal experience, having had three surgeries for NETs in the upper digestive tract (2003, 2005 and 2016) I can understand your curiosity. It is important to learn as much as you can in order to advocate for yourself.

In learning more about NETs, here is a video presentation from one of Mayo Clinic's NETs specialists that might help you.

Hello, Carrie, My name is Lucy and I'm having my first surgery this month on the 20th. What I want to know is what hormones are the tumors excruciating? I had a total hysterectomy in 1988 but I took estrogens for abt 20 yrs afterwards with NO complications. But I just read about taking meds contaminated with NDMS? that causes cancer like zantac, ect and bacon and cheeses. And I take and eat 4 of 6. Anyway. I read that NETS usually has a 5 year lifespan?? I'm 69. I DONT really want to live to my 80's. Sorry if that was offensive. I'll add you to my prayer list. You add me to yours. Hugs. Lucy. From Texas !! Having my Sx in San Antonio @ Methodist Hosp.

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)?

I replied but not sure if I posted correctly. Thx

Hello @sharond1956 and welcome to Mayo Connect. Cancer diagnoses do have a way of leaving you speechless, I understand completely. I've had three surgeries for NETs and I've never had any symptoms. I'm really sorry to hear that after 17 months of treatment that your SIL is now dealing with aggressive tumors.

What type of chemo are her doctors recommending?