Newly diagnosed with NET in liver

Posted by spartan @spartan, Thu, Jul 4 7:05pm

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.

So the liver is where the net started or did it start somewhere else and spread to the liver? What is the size of the tumor? Did they do chromogranin A test and urine test?

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Here is a Primer for those new to neuroendocrine tumors. I hope this helps. Message back with questions.

Shared files

NET Primer for Newbies (NET-Primer-for-Newbies.pdf)

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Hello @spartan, I'm glad that you found our discussion group on NETs. When I was first diagnosed in 2003, there was little information and almost no support. All I knew was that I had something "rare." To date, I've had three surgeries for carcinoids in the duodenal bulb. I see that member, @tomewilson has also provided you with some information. I'd also like to direct you to the Carcinoid Foundation website where you can learn more about doctors, support groups, etc. https://www.carcinoid.org/. On their website, you can sign up to receive email newsletters that will keep you informed about the latest research and treatment for NETs.

If you are comfortable doing so, please share a little about how your doctors arrived at this diagnosis. For example;

What kind of symptoms did you have that led your doctor to run tests?
What tests were run to determine that you had NETs? Did it include the 68Ga DOTATATE Positron Emission Tomography (PET) that specifically looks for NETs?
Do you have other health problems as well as the NET?
How are you feeling now?

I look forward to hearing from you. I've found that the more support I have for NETs the better I feel. As one of our Connect Mentors says,

"We are better together."

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@feebee

So the liver is where the net started or did it start somewhere else and spread to the liver? What is the size of the tumor? Did they do chromogranin A test and urine test?

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The liver is where it has started; as a result of a scan and a biopsy. We will want a more complete PET scan to determine where else it is. Its 2 cm.

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@tomewilson

Here is a Primer for those new to neuroendocrine tumors. I hope this helps. Message back with questions.

Jump to this post

Thank you very much Tom. This is so incredibly helpful and we have requested the Ki-67 from the biopsy as a result of reading your packet. We are in San Diego and looking for a NET specialist. We are pursuing UCSD since they are an NCI cancer center however not sure if they are experienced in NET. We will likely have more questions as we get through the next few weeks. Many thanks again.

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@hopeful33250

Hello @spartan, I'm glad that you found our discussion group on NETs. When I was first diagnosed in 2003, there was little information and almost no support. All I knew was that I had something "rare." To date, I've had three surgeries for carcinoids in the duodenal bulb. I see that member, @tomewilson has also provided you with some information. I'd also like to direct you to the Carcinoid Foundation website where you can learn more about doctors, support groups, etc. https://www.carcinoid.org/. On their website, you can sign up to receive email newsletters that will keep you informed about the latest research and treatment for NETs.

If you are comfortable doing so, please share a little about how your doctors arrived at this diagnosis. For example;

What kind of symptoms did you have that led your doctor to run tests?
What tests were run to determine that you had NETs? Did it include the 68Ga DOTATATE Positron Emission Tomography (PET) that specifically looks for NETs?
Do you have other health problems as well as the NET?
How are you feeling now?

I look forward to hearing from you. I've found that the more support I have for NETs the better I feel. As one of our Connect Mentors says,

"We are better together."

Jump to this post

Thank you Teresa for the link to the Carcinoid Foundation. My symptoms were: blood in urine and my primary was watching my liver the last few years. I had PET on the liver which showed three spots. Needle biopsy done on the largest of the spots. Other health problems: cardiac (valve since birth and defibrilator a few years ago) and diabetes. My mother died of glioblastoma at a young age so I am curious whether NET tests positive for a genetic propensity for cancer. I have clinical depression diagnosed 10 years ago…lots of health issues already so the support of this discussion group is really helpful as I journey through this. Thank you for the encouragement!

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Here is a great resource to find NET specialists – http://www.carcinoid.org/for-patients/treatment/find-a-doctor. I'm glad the document was helpful for you. If you don't mind, if you have any suggestions what you feel should be added, please let me know. Always trying to make enhancements.

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@spartan

Thank you Teresa for the link to the Carcinoid Foundation. My symptoms were: blood in urine and my primary was watching my liver the last few years. I had PET on the liver which showed three spots. Needle biopsy done on the largest of the spots. Other health problems: cardiac (valve since birth and defibrilator a few years ago) and diabetes. My mother died of glioblastoma at a young age so I am curious whether NET tests positive for a genetic propensity for cancer. I have clinical depression diagnosed 10 years ago…lots of health issues already so the support of this discussion group is really helpful as I journey through this. Thank you for the encouragement!

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Hello @spartan

I'm glad that you are finding this discussion helpful. From the Carcinoid website, that Tom and I provided it looks as if CA has some specialists. I've heard that Dr. Liu in Colorado is considered excellent as well.

Will you post again after you meet with the oncologist with and update?

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