1. < Neuroendocrine Tumors (NETs)
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Has anyone had NET show up on CT scan, I had CT scan in 23

Posted by jsudjian @jsudjian, Aug 31 10:18am

I had CT scan in 23 looking for tumors for testosterone issues, found nothing, but now here I am fifth the full time facial neck and head flushing and itching, slightly elevated heart rate now and then but I'm extremely stressed and out of shape too so idk.

I know PET CT is main test.

I do the urine test monday or tuesday.

I'm just praying it's not NET, but we've ruled a lot out, scared and can't stop thinking about it.

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

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pnelson5220 | @pnelson5220 | Sep 16 10:18am

@hopeful33250, I've been quite fortunate - my first follow up will be 6 months post surgery and all is good. I've been told the tumors were found "in time" and while the team feels they've removed all of them - there is certainly a chance there were some tumors missed. I am grateful for the team at Mayo and their care and knowledge of this type of cancer.
I am eating normal, no issues with digestion, etc.🙌

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Teresa, Volunteer Mentor | @hopeful33250 | Sep 16 3:30pm
In reply to @pnelson5220 "@hopeful33250, I've been quite fortunate - my first follow up will be 6 months post surgery..." + (show)
Profile picture for pnelson5220 @pnelson5220

@hopeful33250, I've been quite fortunate - my first follow up will be 6 months post surgery and all is good. I've been told the tumors were found "in time" and while the team feels they've removed all of them - there is certainly a chance there were some tumors missed. I am grateful for the team at Mayo and their care and knowledge of this type of cancer.
I am eating normal, no issues with digestion, etc.🙌

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What a great report, @pnelson5220. The fact that you were seen at Mayo Clinic was a real advantage to you, as they have renowned NET specialists.

The fact that you are eating with no problems is great. When NETs are found early it does provide you with an advantage. Will your follow-up include the 68Ga DOTATATE Positron Emission Tomography (PET)? (https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/)

Will you continue to post with questions, concerns, or updates?

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midford | @midford | Sep 24 10:23am
In reply to @xosefa "I had a pet scan that showed 20 small nodules, 10 on each lung. Had a..." + (show)
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I had a pet scan that showed 20 small nodules, 10 on each lung. Had a biopsia. NETS were confirmed. Grade 1. Only 1% rate of proliferation. This was 2 years ago. Oncologist say just to control and wait. No other treatment. Not too many symtoms except some dry cough and fatigue. I am now 82 years old. I guess there is nothing else I can do except to wait. Other recent scan do not show growth. I was thinking that I will probably die of something else at this age. Any comments?

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Oh interesting to hear you have a good few and all is ok. I just had the one and found initially by CT. Confirmed by a biopsy. I’m 64 and have lots of things I still want to do!! So thanks for being my inspiration!

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pipo | @pipo | Oct 3 2:49pm
In reply to @lindabees "I understand your fears. I hope you get to the bottom of what's causing your symptoms...." + (show)
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I understand your fears. I hope you get to the bottom of what's causing your symptoms.
My husband's pnet was found incidentally through a CT scan. But it took a biopsy to confirm it was net and not adenocarcinoma (Praise God!) It also showed spots on his liver which the radiologist misread as hemangiomas when they were actually mets. So yes - a net tumor can be visualized with a cut but others have said, additional testing is required to confirm.
BTW - my husband's diagnosis was 18 years ago and he's still living life.

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@lindabees
What kind of treatment did he reveive?

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lindabees | @lindabees | Oct 3 4:05pm
In reply to @pipo "@lindabees What kind of treatment did he reveive?" + (show)
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@lindabees
What kind of treatment did he reveive?

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@pipo
It's a long list.
Distal Pancreatectomy
Y90 to both lobes of liver
Octreotide/Lanreotide
Cyberknife to lymph nodes
Everolimus
Captem (14 cycles)
Now on maintenance does of capcetibine only

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pipo | @pipo | Oct 4 11:42am
In reply to @lindabees "@pipo It's a long list. Distal Pancreatectomy Y90 to both lobes of liver Octreotide/Lanreotide Cyberknife to..." + (show)
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@pipo
It's a long list.
Distal Pancreatectomy
Y90 to both lobes of liver
Octreotide/Lanreotide
Cyberknife to lymph nodes
Everolimus
Captem (14 cycles)
Now on maintenance does of capcetibine only

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@lindabees Wow. Thank you for the respond. 5 years ago I had mini Whipple(PNET). A month ago a leison appeared in my liver, in a risky place for biopsy - under the dome. It has been shown both in CT and MRI. The whole team of oncologist and radiologists offer a dynamic observation instead of biopsy. I am nervous. What if?..

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Teresa, Volunteer Mentor | @hopeful33250 | 6 days ago
In reply to @pipo "@lindabees Wow. Thank you for the respond. 5 years ago I had mini Whipple(PNET). A month..." + (show)
Profile picture for pipo @pipo

@lindabees Wow. Thank you for the respond. 5 years ago I had mini Whipple(PNET). A month ago a leison appeared in my liver, in a risky place for biopsy - under the dome. It has been shown both in CT and MRI. The whole team of oncologist and radiologists offer a dynamic observation instead of biopsy. I am nervous. What if?..

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Hello @pipo and welcome to Connect. I'm glad that you found this forum. NETs are a rare disorder, and there is much to be learned from the experiences of others.

I can understand what you mean when you say you are nervous about dynamic observation only at this point. Most NETs patients benefit from having at least one consultation with a NET specialist. This might be a good time for you to seek a second opinion. Mayo Clinic has NET specialists at all of its locations. Here is a link with information on how to obtain a consultation at a Mayo facility. http://mayocl.in/1mtmR63. If, for any reason, you can not be seen at Mayo, here is a listing of NET specialists from the Carcinoid Cancer Foundation's website, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/,

As you are not comfortable with the decision of your current medical team, have you considered a second opinion?

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