1. < Neuroendocrine Tumors (NETs)

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 15, 2022
In reply to @sharond1956 "I replied but not sure if I posted correctly. Thx" + (show)
@sharond1956

I replied but not sure if I posted correctly. Thx

Jump to this post

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)?

REPLY
1 reply
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)
@hopeful33250

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)?

Jump to this post

Most definitely will post with follow up. Thank you!

REPLY
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

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.

Jump to this post

@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

REPLY
1 reply
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

REPLY
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)
@hopeful33250

@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.


If you are comfortable sharing more, where are NETs located? Were you having symptoms prior to the diagnosis?

Jump to this post

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!

REPLY
1 reply
Mentor
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

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!

Jump to this post

@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?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 30, 2022
In reply to @carrie55 "@keeper3102 Hi Lucy! I’m sorry I just saw your message now. Yes I’ll add you to..." + (show)
@carrie55

@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

Jump to this post

Hello @carrie55,

I am sorry to hear that your chemo is not working well. How are you doing now? Are you still experiencing a lot of pain?

REPLY
nikkie3024 | @nikkie3024 | May 22 8:17pm
In reply to @sharond1956 "We won’t know until this Wednesday any additional info. But we are not happy with the..." + (show)
@sharond1956

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

Jump to this post

Hi! How are you doing? I hope you are doing well. Do you have any updates- what was a tumor board decision ? What kind of treatment was recommended? Thank you!

REPLY
Sherry | @bluebelle | May 23 9:38am

Hi Carrie! I am do sorry to hear your news and I completely empathize with your situation. I also have stage 4 neuroendocrine cancer which originated in my ilium (small intestines), spread into many lymph nodes, and has now metastasized to my liver. I had been on monthly Octreotide injections for the first 6 months and now with the latest PET scan revealing metastasis to my liver, I will be starting a relatively new treatment to the US called Lutathera which is a radiation treatment that specifically targets these neuroendocrine cancer cells. If you’re interested, please look it up as the results have been very successful especially for the symptoms. My doctor did not do chemo as he said it is generally not effective but I’m sure your doctor had his/her reasons and as we know, every case is different. Please don’t give up, please get a second opinion that specializes in NET cancer, and see what you think about this new treatment. Unfortunately, it is not offered everywhere and we just got it in the US a few years ago. I should start mine next month and I’m excited bc I believe this is our chance to survive:) I don’t know you, but I love you and I’m holding you in my prayers and in my heart❤️
Sherry

REPLY
1 reply
canuk | @canuk | May 24 9:26am

So sorry to hear that Carrie. By all means, talk to your doctors about alternative treatments. Canadian cancer care is second to none.

REPLY
View MoreView Less
Please sign in or register to post a reply.