Liver neuroendocrine tumors

Posted by felo @felo, Jan 3 4:09pm

I will like to know mora about i live in colombia
Please i will like to talk with some one with the same

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

Hello @felo and welcome to Mayo Clinic Connect. I can understand that you would want to talk with others who have also had liver NETs. Connect does have a conversation about this topic. Here is the link, https://connect.mayoclinic.org/discussion/newly-diagnosed-with-net-in-liver/

I look forward to getting to know you better. If you are comfortable sharing more information about yourself, I would be interested in knowing: How long ago you were diagnosed? Has your doctor suggested any treatments? Are you having pain or other symptoms?

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@felo

I wanted to invite you to a NETs support group meeting this Thursday, Jan. 6, from 5:30 to 7 EST. I think you will find this group to be very supportive. This is a virtual meeting, on Zoom, so folks with NETs from all over the country attend. Dr. Jason Star will be speaking. Dr. Star is a NET specialist from Mayo Clinic in Jacksonville, FL

Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.

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@hopeful33250

@felo

I wanted to invite you to a NETs support group meeting this Thursday, Jan. 6, from 5:30 to 7 EST. I think you will find this group to be very supportive. This is a virtual meeting, on Zoom, so folks with NETs from all over the country attend. Dr. Jason Star will be speaking. Dr. Star is a NET specialist from Mayo Clinic in Jacksonville, FL

Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.

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I was diagnosed with Stage 4 midgut NETs in Sept. 2021. I have metastses in the liver ( 10 % tumor burden), bones, pleura and lymph nodes. Being followed at Fox Chase Cancer Center in Phila. Currently being treated with Octreotide LAR. Have pain and discomfort in epigastric primarily.

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@lenorahaston

I was diagnosed with Stage 4 midgut NETs in Sept. 2021. I have metastses in the liver ( 10 % tumor burden), bones, pleura and lymph nodes. Being followed at Fox Chase Cancer Center in Phila. Currently being treated with Octreotide LAR. Have pain and discomfort in epigastric primarily.

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Hello @lenorahaston and welcome to Mayo Clinic Connect.

I'm glad that you are looking for support and have found this discussion group. Let me introduce myself, I have had three surgeries for NETs in the duodenum bulb without any metastasis yet. My NETs were found incidentally when the doctor was doing a routine upper endoscopy. I actually did not have any symptoms.

I would also like to invite you to the next NETs support group, which originates from Mayo's facility in Florida, but is a virtual meeting that is attended by NETs patients across the county. It is a great way to hear the journies of others who are dealing with NETs. The group is facilitated by Michelle Walsh, a Mayo Clinic Social worker. Before the speaker, there is a time for everyone to share their stories if they choose to. Here is information to register:
Zoom Support Group Meeting, Thursday, January 6, 2022
5:30pm – 7pm EST (2:30pm – 4pm MST), Dr. Jason Starr

Topic: Genetic Testing
(patients, caregivers, and families are welcome to attend) Mayo Clinic Oncology, Florida
Location: Virtual (Zoom)

Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.

I look forward to getting to know you a bit better. Could you share, as you are comfortable doing so, a little about what led to your diagnosis? Have surgeries been suggested yet or just medication treatments?

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Thank you for your response. I sent over a more complete profile earlier and also registered for the zoom mtg this evening which was acknowledged.

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@lenorahaston

Thank you for your response. I sent over a more complete profile earlier and also registered for the zoom mtg this evening which was acknowledged.

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@lenorahaston

I'm glad that you were able to register for the NETs support group. I was able to attend the first hour. I hope you were able to listen to the entire meeting. Dr. Star is a good speaker, and I'm looking forward to the March meeting with the NP who will discuss genetics and NETs more completely.

How are you managing the discomfort in the epigastric area? Are there any meds that can help with that pain?

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I have been diagnosed with metastasis to the liver after having a PET Scan and blood work. I had breast cancer 11 years ago and I found a lump on November 8th 2021 near my right clavicle and it is very painful to the touch with the area around, in back of it swollen and causing a lot of pain. It is affecting my right shoulder causing excruciating pain as well, the lump appears to be moving. I have not begun treatment of any sorts. I am still taking the Anastrozole I was prescribed 20 months ago by my oncologist.
With it being 2 months since finding this lump, does it seem like a long time to go without having any chemo, radiation or surgery, etc?
The doctor has only prescribed Percocets for the pain. I feel it has spread beyond being able to be treated. I am feeling hopeless, frustrated and like my doctors do not care.
The liver biopsy was performed on Thursday January 6th and I am still in pain from that. Does this seem normal? 😢😭😭

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@mssewest

I have been diagnosed with metastasis to the liver after having a PET Scan and blood work. I had breast cancer 11 years ago and I found a lump on November 8th 2021 near my right clavicle and it is very painful to the touch with the area around, in back of it swollen and causing a lot of pain. It is affecting my right shoulder causing excruciating pain as well, the lump appears to be moving. I have not begun treatment of any sorts. I am still taking the Anastrozole I was prescribed 20 months ago by my oncologist.
With it being 2 months since finding this lump, does it seem like a long time to go without having any chemo, radiation or surgery, etc?
The doctor has only prescribed Percocets for the pain. I feel it has spread beyond being able to be treated. I am feeling hopeless, frustrated and like my doctors do not care.
The liver biopsy was performed on Thursday January 6th and I am still in pain from that. Does this seem normal? 😢😭😭

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@mssewest, let me make sure I'm understanding correctly. You were originally diagnosed with breast cancer 11 years ago. Since then, you have been diagnosed with liver metastasis. And you recently discovered a painful lump near your clavicle. Do I have that right?

You posted in the neuroendocrine tumor (NET) group, but at this point you have not been diagnosed with a neuroendocrine tumor, right?

Currently you are undergoing testing to discover the extent of your metastasis. You are concerned that things are not moving fast enough since you discovered the new lump 2 months ago. It sounds like testing is still underway and that you just had a liver biopsy last week. When will you consult with your oncologist to discuss treatment options?

Please join this discussion with other metastatic breast cancer thrivers.
– Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

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@colleenyoung

@mssewest, let me make sure I'm understanding correctly. You were originally diagnosed with breast cancer 11 years ago. Since then, you have been diagnosed with liver metastasis. And you recently discovered a painful lump near your clavicle. Do I have that right?

You posted in the neuroendocrine tumor (NET) group, but at this point you have not been diagnosed with a neuroendocrine tumor, right?

Currently you are undergoing testing to discover the extent of your metastasis. You are concerned that things are not moving fast enough since you discovered the new lump 2 months ago. It sounds like testing is still underway and that you just had a liver biopsy last week. When will you consult with your oncologist to discuss treatment options?

Please join this discussion with other metastatic breast cancer thrivers.
– Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

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Thank you Colleen, I posted it in the wrong group. You are correct. I was treated for breast cancer 9 years ago. Testing still underway, for lump recently found in clavicle, waiting for results from biopsy of Liver but Onc says it’s Liver Cancer based on the tests already ran. I’m trying to find out if 2 months after finding a big palpitating lump, is a reasonable amount of time before treatment is started. I’m feeling like the doctors are dragging their feet and something should be done sooner.

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