1. < Neuroendocrine Tumors (NETs)

Newly diagnosed with NET in liver

Posted by spartan @spartan, Jul 4, 2019

Hello - and so grateful to find this group. I just received the diagnose earlier this week and have been trying to find info. Trying not to get too ahead of this before I meet with oncologist next week. Thankful for your perspective for newly diagnosed. I have other chronic health issues (cardiac and diabetes) which is huge concern.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 24, 2022
In reply to @harley4650 "I had net tumor on small intestine was removed with 3ft of intestine on 5/22, looks..." + (show)
@harley4650

I had net tumor on small intestine was removed with 3ft of intestine on 5/22, looks like it spread to the liver 3 spots i had 3 sandostatin shots monthly had a cat scan 2wks ago showing tumors growing larger, doctors want to start prrt next month, still have lots of diarrha and crams and gas from the surgery.Undecided on prrt need more information

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Hi @harley4650

Deciding on PRRT, or any type of chemotherapy, is a big decision. Getting more information is a great first step. I always say that an informed patient makes the best decisions. As @colleenyoung, mentioned in her post we do have discussion on Connect from others who have had or considered PRRT. I would encourage you to attend the NETs support group meeting on the first Thursday of the month at 5:30 p.m. EST. It is a virtual meeting, via Zoom. I mention it because there are many members of the support group who have had PRRT, and they would gladly share their experiences.

Have you or your doctors considered liver embolization? It is a way of lightening the tumor load in the liver. Here is some information about this procedure:

--Embolization Therapy for Liver Cancer
https://www.cancer.org/cancer/liver-cancer/treating/embolization-therapy.html
You might consider having a consultation with a NETs specialist. The Carcinoid Cancer Foundation (CCF) has a list of NET specialists. If you go to the CCF website, you can see if there is a specialist nearby for an in-person or virtual consultation.

Here is a Mayo Clinic video describing PRRT.


I hope that it helps you understand the process a bit more.

What have your doctors told you about PRRT?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 11, 2022
In reply to @christine714 "I was diagnosed with a NET in my liver, the source of the tumor is in..." + (show)
@christine714

I was diagnosed with a NET in my liver, the source of the tumor is in my small intestine. I will be having surgery at the end of September. I would like to know how to join the support group that meets monthly. I would also appreciate advice or suggestions from others who have been through surgery on their small intestine and liver. What is important to ask or know going into this surgery? Thank you in advance for your help.

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Hello @christine714

When you posted last month, you indicated that you would be having surgery at the end of September. I was thinking about you and wondering how you are feeling post-surgery.

When it's convenient, will you post an update?

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reallywells | @reallywells | Dec 5, 2022

hi just join. really scare my urine test was normal. but have had symptoms for two years. My cga was high 122 and 152. constant stomach pain after c diff and diarrhea. been going to gastro for 2 years changed. cant eat have lost alot of weigh. Have had 12 ct scan nothing wrong. now having pet scan tomorrow really scared Im goig to die with this. Need support badly thanks beverly. Has anyone had a high cga with out cancer and tumors

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 11, 2022
In reply to @reallywells "hi just join. really scare my urine test was normal. but have had symptoms for two..." + (show)
@reallywells

hi just join. really scare my urine test was normal. but have had symptoms for two years. My cga was high 122 and 152. constant stomach pain after c diff and diarrhea. been going to gastro for 2 years changed. cant eat have lost alot of weigh. Have had 12 ct scan nothing wrong. now having pet scan tomorrow really scared Im goig to die with this. Need support badly thanks beverly. Has anyone had a high cga with out cancer and tumors

Jump to this post

Hi @reallywells
Although CgA is the most widely used tumor marker in patients with a suspected or confirmed neuroendocrine tumor, CgA testing has limitations.

I think you'll find the information from this website helpful.
– Chromogranin A https://www.testing.com/tests/chromogranin/
Here's an excerpt:
"CgA levels can be elevated in a range of health conditions other than neuroendocrine tumors. For example, CgA levels may increase in people with irritable bowel disease, chronic hepatitis, liver failure, inflammatory diseases, and renal failure. Several medications can also cause an elevation in CgA levels.

As a result, CgA testing for neuroendocrine tumors may produce an elevated result that shows signs of a NET when a person does not actually have this kind of tumor.

Multiple laboratory tests are available to measure the amount of chromogranin A in the blood. Results can vary depending on the test that is used. If CgA levels are being monitored over time, it is important that the same test method be used each time."

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