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.

amygirl | @amygirl | 2 days ago
In reply to @hopeful33250 "Hello @carrie55 and welcome to Connect. I'm sorry to hear of this new diagnosis and the..." + (show)
@hopeful33250

Hello @carrie55 and welcome to Connect. I'm sorry to hear of this new diagnosis and the frightening way that your medical team has presented your diagnosis and your future. I've never heard of such a negative presentation before. As you live in Canada, I understand that your health-care system is different than that in the U.S.

From my understanding, NETs and Neuroendocrine Carcinomas usually refer to the same thing. Are you being seen at a cancer center in Alberta? Have you had a Gallium 68 PET Scan? This type of scan is the best way to determine the presence of NETs.

–Please see the Connect discussions on this type of PET scan. Here are the links,
https://connect.mayoclinic.org/discussion/gallium-68/
https://connect.mayoclinic.org/discussion/what-nets-show-on-gallium-scan/
I'm wondering if you would be able to contact a NET specialist. Perhaps a phone or video consult could provide you with some additional help. The Carcinoid Cancer Foundation website offers a world-wide listing of NET specialists. Check out their website and see what you can find near you.

You mentioned that you were starting chemotherapy. What type of chemo is this? Also, has there been any discussion of a liver embolization to lessen the tumor load? These are good questions to ask your medical team.

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I have NET in my liver but was told chemo does nothing. Wondering if u also have another form of cancer also.

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2 replies
amygirl | @amygirl | 2 days ago
In reply to @sharond1956 "This was very interesting. My SIL has NET in liver (started in pancreas). She is doctoring..." + (show)
@sharond1956

This was very interesting. My SIL has NET in liver (started in pancreas). She is doctoring at WVU cancer center. 17 months after removing the affected half of pancreas and having Y90 treatments in liver, she is actually feeling great. BUT dr called yesterday says they need to start 2 different IV chemos asap because tumors are acting aggressive. We are speechless and we don’t know which way to turn. Tumor board met yesterday. We are scared

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What is Y90 treatments? Why chemo? I was told would do nothing?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 2 days ago
In reply to @amygirl "What is Y90 treatments? Why chemo? I was told would do nothing?" + (show)
@amygirl

What is Y90 treatments? Why chemo? I was told would do nothing?

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Hello @amygirl,

Here is a link with some information about Y90 treatments for tumors in the liver.
--Y90 radioembolization
https://www.mdanderson.org/treatment-options/y90-radioembolization.html
You said that you were told that there were no chemo treatments for your situation. Within the past couple of years a chemo, referred to as PRRT has been developed for NETs.

Are you seeing a NET specialist? If so, you might want to discuss with your oncologist other treatments that might be available to you.

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sophiarose | @sophiarose | 1 day ago
In reply to @amygirl "I have NET in my liver but was told chemo does nothing. Wondering if u also..." + (show)
@amygirl

I have NET in my liver but was told chemo does nothing. Wondering if u also have another form of cancer also.

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I have metastatic NET
Did they tell you about Afinitor? It is a form of chemotherapy
There are many people in it with good outcomes
I took it for 9 weeks however I got one of the rare side effects and had to stop
But other than that it was tolerable
There is also PRRT which I just finished and will get scanned in February
There is a lot of treatments out there
Be strong
Keep fighting
I myself have gotten 3 didn’t options and I am researching a 4th
Best wishes

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1 reply
Sherry | @bluebelle | 1 day ago

Hi! My cancer has also metastasized to my liver and I get Octreotide injections every month and I also just finished my 4th (and final) Lutathera radiation infusions. Please look this up if you’re interested as it is an alternative to chemo which I was told would not help. This particular treatment ( Lutathera) specifically targets the neuroendocrine cancer cells unlike chemo which can go to other parts of the body as I understand it. My doctor won’t talk about timelines but instead tells me never to give up as there are new/better treatments coming out everyday. Are you sought a second opinion and/or a NET specialist? It never hurts to seek a second opinion.
Prayers for you and anyone dealing with this awful diagnosis…❤️

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ronjake | @ronjake | 1 day ago
In reply to @amygirl "I have NET in my liver but was told chemo does nothing. Wondering if u also..." + (show)
@amygirl

I have NET in my liver but was told chemo does nothing. Wondering if u also have another form of cancer also.

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What about CapTem which is a pill form chemo specifically for NET. I just finished my fourth cycle on it, but after my third cycle had a CT scan and all of my measureable tumors have shrank, some by half. My Dr is actually shocked that it is working so well and wants some of my blood so they can test to see why it is working

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amygirl | @amygirl | 1 day ago

I have only been told about a shot once a month that has side effects. Wondering what the side effects could be. Thank you for your reply . I will ask at next appt.

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amygirl | @amygirl | 1 day ago
In reply to @sophiarose "I have metastatic NET Did they tell you about Afinitor? It is a form of chemotherapy..." + (show)
@sophiarose

I have metastatic NET
Did they tell you about Afinitor? It is a form of chemotherapy
There are many people in it with good outcomes
I took it for 9 weeks however I got one of the rare side effects and had to stop
But other than that it was tolerable
There is also PRRT which I just finished and will get scanned in February
There is a lot of treatments out there
Be strong
Keep fighting
I myself have gotten 3 didn’t options and I am researching a 4th
Best wishes

Jump to this post

No I haven't been. Only told about shot once a month once my tumors become a certain size and that shot has side effects. I will ask at next appt. Thank you

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