1. < Neuroendocrine Tumors (NETs)

New Diagnosis: husband's labs are all indicating NET

Posted by hospicern @hospicern, Jan 31 9:23pm

My husband's labs are all indicating NET. His Chromogranin levels are 2474 and repeated is 1944. PET Scan did not light up. Next week is MGIB Scan. This is all new to us iver the last 6 weeks. Advice, suggestions, prayers are welcome!!!

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

katinmayflower | @katinmayflower | Feb 2 5:51pm

New to this site, just found out our 3month great grand child has a neuroendocrine secreting tumor near her kidney. She was a 6 weeks early and they had seen a spot near the kidney at last scan before birth. Have been doing tests, ect....for past 3 months to determine whether it was a concern. I have not found anything about this type of tumor in infants, or near kidney. Any one have info? They just got test report and will see doctor again this week.

thanks

REPLY
2 replies
Turkey | @tomrennie | Feb 2 7:31pm
In reply to @katinmayflower "New to this site, just found out our 3month great grand child has a neuroendocrine secreting..." + (show)
@katinmayflower

New to this site, just found out our 3month great grand child has a neuroendocrine secreting tumor near her kidney. She was a 6 weeks early and they had seen a spot near the kidney at last scan before birth. Have been doing tests, ect....for past 3 months to determine whether it was a concern. I have not found anything about this type of tumor in infants, or near kidney. Any one have info? They just got test report and will see doctor again this week.

thanks

Jump to this post

I have been on here for about 2.5 years. I have not heard anything like that. But, give it a day or so. If there is anyone with a similar experience, or a resource available for more information, it will be shared.

REPLY
1 reply
katinmayflower | @katinmayflower | Feb 2 7:41pm
In reply to @tomrennie "I have been on here for about 2.5 years. I have not heard anything like that...." + (show)
@tomrennie

I have been on here for about 2.5 years. I have not heard anything like that. But, give it a day or so. If there is anyone with a similar experience, or a resource available for more information, it will be shared.

Jump to this post

thanks

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 2 9:36pm
In reply to @katinmayflower "New to this site, just found out our 3month great grand child has a neuroendocrine secreting..." + (show)
@katinmayflower

New to this site, just found out our 3month great grand child has a neuroendocrine secreting tumor near her kidney. She was a 6 weeks early and they had seen a spot near the kidney at last scan before birth. Have been doing tests, ect....for past 3 months to determine whether it was a concern. I have not found anything about this type of tumor in infants, or near kidney. Any one have info? They just got test report and will see doctor again this week.

thanks

Jump to this post

Hi @katinmayflower, you must be so worried about your great granddaughter.

Here is some information about neuroendocrine tumors (NETs) in children
- Neuroendocrine Tumors (NETs) | Boston Children's Hospital https://www.childrenshospital.org/conditions/neuroendocrine-tumors
- Childhood Neuroendocrine Tumors (NETs) https://www.dana-farber.org/cancer-care/types/childhood-neuroendocrine-tumors

"Pediatric neuroendocrine tumors are a rare group of tumors that originate from neuroendocrine cells in children. These cells are responsible for producing hormones and can be found throughout the body. The tumors can be benign or malignant and may cause various symptoms depending on their location and the hormones they produce."

I'm glad that the tumor was spotted and identified. It sounds like she has an excellent medical team looking out for her. Have they determined whether the tumor is benign or malignant? Will she need treatment?

REPLY
kevinmonroemi | @kevinmonroemi | Feb 3 6:10am
In reply to @lagunagrl "Hi, This is my first post on this site. Just discovered it a few days ago...." + (show)
@lagunagrl

Hi,
This is my first post on this site. Just discovered it a few days ago. I was diagnosed with a NET on/in my liver this past November. What a rollercoaster ride. It's actually a metastasis from a NET I had removed in 2008. Thought I was out of the woods back then. Since it's spread it's considered Stage 4. Who is on a multidisciplinary team? Right now I have an oncologist at University of Wisconsin. And I would appreciate some guidance for finding the treatments and tools in the toolbox. Right now my toolbox seems pretty empty. Thank you?

Jump to this post

Multidisciplinary team is a group of professional's from various disciplines who collaborate to provide comprehensive care for patients. These teams are designed to bring together the unique skills and expertise ultimately resulting in improved patient outcomes. What do you know about the tumor? What type is it? Is it functioning? secreting hormones? Can it be removed? What grade is it? What is the Ki-67 ? Do they know where the primary is? You should know these things. If they can’t tell you these things go somewhere else.

REPLY
1 reply
lagunagrl | @lagunagrl | Feb 3 9:15am
In reply to @kevinmonroemi "Multidisciplinary team is a group of professional's from various disciplines who collaborate to provide comprehensive care..." + (show)
@kevinmonroemi

Multidisciplinary team is a group of professional's from various disciplines who collaborate to provide comprehensive care for patients. These teams are designed to bring together the unique skills and expertise ultimately resulting in improved patient outcomes. What do you know about the tumor? What type is it? Is it functioning? secreting hormones? Can it be removed? What grade is it? What is the Ki-67 ? Do they know where the primary is? You should know these things. If they can’t tell you these things go somewhere else.

Jump to this post

Thank you. I have been told all of these things, but I was more interested in what specialty doctors, besides the oncologist, need to be involved. The names of the specialty.

REPLY
1 reply
annamay | @annamay | Feb 3 10:53am
In reply to @lagunagrl "Hi, This is my first post on this site. Just discovered it a few days ago...." + (show)
@lagunagrl

Hi,
This is my first post on this site. Just discovered it a few days ago. I was diagnosed with a NET on/in my liver this past November. What a rollercoaster ride. It's actually a metastasis from a NET I had removed in 2008. Thought I was out of the woods back then. Since it's spread it's considered Stage 4. Who is on a multidisciplinary team? Right now I have an oncologist at University of Wisconsin. And I would appreciate some guidance for finding the treatments and tools in the toolbox. Right now my toolbox seems pretty empty. Thank you?

Jump to this post

I was diagnosed last October. It was such a surprise. Fortunately, I have a team of experts who are experienced treating NET. My team is at Froedtert Hospital/Medical College of Wisconsin. I and a family member are both being treated here. Our teams includes a surgical oncologist, medical oncologist, intervention radiologist, and support staff, all with experience with NET. The NETs in my intestine were removed but I have follow up appointments to monitor for future tumors. Odds are, there will be more, and I am ready.
Second opinions can be very helpful, especially for something so important.
My thoughts are with you. It is hard to find the right medical care. I was lucky.
I wish you well.

REPLY
1 reply
lagunagrl | @lagunagrl | Feb 3 11:59am
In reply to @annamay "I was diagnosed last October. It was such a surprise. Fortunately, I have a team of..." + (show)
@annamay

I was diagnosed last October. It was such a surprise. Fortunately, I have a team of experts who are experienced treating NET. My team is at Froedtert Hospital/Medical College of Wisconsin. I and a family member are both being treated here. Our teams includes a surgical oncologist, medical oncologist, intervention radiologist, and support staff, all with experience with NET. The NETs in my intestine were removed but I have follow up appointments to monitor for future tumors. Odds are, there will be more, and I am ready.
Second opinions can be very helpful, especially for something so important.
My thoughts are with you. It is hard to find the right medical care. I was lucky.
I wish you well.

Jump to this post

Annamay,
Thanks for this info. My NET can't be surgically removed since it has spread. I get monthly injections of this drug that is supposed to suppress tumor growth. I've heard good things about Froedtert. Alas, my Medicare plan is under an HMO. Next year I will switch to regular Medicare so I have more choices. Thanks for listening and my thoughts are with you and your family member.

REPLY
kevinmonroemi | @kevinmonroemi | Feb 3 6:02pm

Not sure about that I don’t go off mine. I need them too much. But I am already diagnosed

REPLY
kevinmonroemi | @kevinmonroemi | Feb 3 6:08pm
In reply to @lagunagrl "Thank you. I have been told all of these things, but I was more interested in..." + (show)
@lagunagrl

Thank you. I have been told all of these things, but I was more interested in what specialty doctors, besides the oncologist, need to be involved. The names of the specialty.

Jump to this post

It depends on your needs a good team consults them and have good ones on the board! For example I needed a lot of help from gastroenterology because my tumors caused major GI problems.

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