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.

kaiulani | @kaiulani | 11 hours ago

In reply to @colleenyoung "Welcome, @estrellita1. I moved your question about neuroendocrine tumor spreading to the liver to this related..." + (show)

I’m just wondering if this group still holds monthly Zoom meetings on the first Thursday of every month. Lately, I haven’t noticed that the meeting was taking place. I really enjoyed this group.

vinnie694 | @vinnie694 | 2 days ago

In reply to @estrellita1 "May husband has an endocrino tumor , it seems that it expand to the líver si..." + (show)

Hello, I was diagnosed about 2 1/2 years ago, primary tumor was identified in the small bowel and metastasized to the liver, I’ve been on Ocreotide shots every 28 days and recently finished my last Lutathera (radiation treatment) and, there have been no new tumors over the 2 1/2 years and halfway through my radiation treatment, some that were growing are actually shrinking.. Physical I don’t feel any different than I did back when I was diagnosed.. Mentally I feel a lot better.. Seeing a neuroendocrine specialist is definitely recommended!,

estrellita1 | @estrellita1 | 2 days ago

In reply to @colleenyoung "Welcome, @estrellita1. I moved your question about neuroendocrine tumor spreading to the liver to this related..." + (show)

tks for yr reply my husband is treated since 2020 with Octeotride injection, once a month now in his last Magnetic Resonance he has no significant changes in the tumor, but some spots in the liver, in few weeks we have a date with the oncologo, then they will see if they increase the medication, or change, or add something, very preocupated for him

View Translation

Colleen Young, Connect Director | @colleenyoung | 2 days ago

In reply to @estrellita1 "May husband has an endocrino tumor , it seems that it expand to the líver si..." + (show)

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?

estrellita1 | @estrellita1 | May 18 12:10am

May husband has an endocrino tumor , it seems that it expand to the líver si that dangerous?

View Translation

Colleen Young, Connect Director | @colleenyoung | Jan 13 6:57pm

In reply to @kaiulani "Hi! I live in Calgary and I have Stage 4 pNET with overwhelming liver mets. My..." + (show)

Hi @kaiulani, I'm sure the November news of further progression was shocking, disappointing and a roller coaster of other emotions. Are you currently on any treatment? Do you work with a palliative care team to help manage side effects?

kaiulani | @kaiulani | Jan 5 12:42pm

Hi! I live in Calgary and I have Stage 4 pNET with overwhelming liver mets. My most recent PET scan in late November showed further progression to my small bowel and to the right parietal bone. Please feel free to DM me, if you are willing to discuss 🙂

amygirl | @amygirl | Jan 4 2:36pm

In reply to @hopeful33250 "Hello @amygirl, Many members have responded to you regarding different treatments for liver METs. Please remember..." + (show)

6 months.

amygirl | @amygirl | Jan 4 2:30pm

In reply to @hopeful33250 "Hello @amygirl, Many members have responded to you regarding different treatments for liver METs. Please remember..." + (show)

My Dr. Has just told me the shot has side effects. Not telling what exactly until the time my tumor/tumors become a certain size. Which is why I would like to get others experience.

Teresa, Volunteer Mentor | @hopeful33250 | Jan 4 7:34am

In reply to @amygirl "No I haven't been. Only told about shot once a month once my tumors become a..." + (show)

Hello @amygirl,

Many members have responded to you regarding different treatments for liver METs. Please remember that medications to treat cancer do not always result in the same side effects for all patients. If you read the posts about the monthly injections you will see that some side effects lessen over time. Whenever we consider a cancer medication, we need to consider the benefits that can be obtained.

What side effect is concerning to you?