1. < Neuroendocrine Tumors (NETs)

NET not found on PET/CT

Posted by mimisayhi @mimisayhi, Feb 9 12:15am

colonoscopy found a 6 mm polyp , biopsied and diagnosed a NET. But subsequent PET/CT detected no cancer! Oncologist and surgeon conferring to decide next steps, but surgery scheduled for Feb 19. Anyone have this experience!?

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

gig666 | @gig666 | Apr 24 11:25pm
In reply to @kim1965 "@gig666 We can't say what treatment to do, but what we all can say on this..." + (show)
@kim1965

@gig666
We can't say what treatment to do, but what we all can say on this site, is you need have a NET Specialist involved, or part of a multi-disciplinary team which directs your treatment. Don't wait, find the assistance you need, either at a Mayo site, or other hospitals having the same type of team with a NET Specialist. My wife is two years in her fight from being diagnosed with NET, with mass on pancreas, and too many tumors on liver to count. Technically, a stage 4 diagnosis. Now she has done the chemo for 9 months, has surgery to remove the primary, and debulked as many of the tumors as possible, finished 4 treatments of PRRT, and have knocked down the NET to much smaller levels and we have options to continue the fight. My message to you, is you can do this, get a good team on your side, start the fight, and beat NET's. You can do this!

Jump to this post

Thank you,,,, l called Dana Farber, Boston for second opinion. Will see May 10th.
I do not understand how do many NETS are not found anywhere, with the high tech 68D pet/scan!
My lungs lite up, but my liver nothing showed only a "mean liver," SUV. 9 .96. My specialists blew it off, it might not be your liver, the uptake is pointing too!
Frustrating!

REPLY
1 reply
kim1965 | @kim1965 | Apr 25 4:05am
In reply to @gig666 "Thank you,,,, l called Dana Farber, Boston for second opinion. Will see May 10th. I do..." + (show)
@gig666

Thank you,,,, l called Dana Farber, Boston for second opinion. Will see May 10th.
I do not understand how do many NETS are not found anywhere, with the high tech 68D pet/scan!
My lungs lite up, but my liver nothing showed only a "mean liver," SUV. 9 .96. My specialists blew it off, it might not be your liver, the uptake is pointing too!
Frustrating!

Jump to this post

My wife has a multi-disciplinary team with a NET Specialist, and even after all the treatment she has received in 2 years. We are getting a 2nd and 3rd opinion from Mayo in Rochester and Dr Liu in Denver. Our next step is a possible Liver Transplant which we aren’t sure if now is the right time hence our search for more opinions. The goal is to get as much information to make the best possible decision in your case. Every case is different, the key is to get that information so you’re confident in your treatment. You got this, we all got this!

REPLY
gig666 | @gig666 | May 4 4:04pm
In reply to @phyllisden "Gig666, I am somewhat appalled that your docs didn't give you more options rather than just..." + (show)
@phyllisden

Gig666, I am somewhat appalled that your docs didn't give you more options rather than just live a good life. However, remember that second opinions are frequently sought in these cases. You can likely even do a video consult with Mayo or another facility.
My NETS were discovered 6 years ago when I had a blockage in my small intestine. There went 10" of that. The following year another blockage - this one in my large intestine. Good-bye 11". I'd been misdiagnosed for 11 years prior to 2018 because mine never showed up on any type of scan - so I can only have the Ga68 Dotatate. And no one I saw ever suspected NETs so never did the right labs.
Anyway, after the first surgery I immediately went on Octreotide LAR injections (and still are). I have small tumors all over and one larger one in my stomach that they say is not removable. So in 2021 I went to Mayo in Phoenix and did PRRT. My condition is considered "stable" and my tumors "non-functioning". I MAY also have IBD-D. Anyway, I'm turning 75 in July and still here. There's always hope and there are always options. I would encourage you to seek a second opinion. You'll never really know if there are options for you unless you do. And remember there are trials going on in multiple places.
You seem to have a "fighting spirit". Keep that up!

Jump to this post

Thank you Phyllisden, yes l saw my two doctors oncologists, and thorax thoracic surgeon. They said it like it is, " l will live with cancer, not necessarily due of it. ". They feel my lungs are active, the right one grew a little and sits on a bed of baby NETS. Left has not grown anymore. I will have Cat scan in June, anymore activity they will take out the lower love on right side. And there is a injection to control the Net Syndrome. As he said, it is snip, snip, cancer, slow growing, we will scan every 6 months. Blessings to you and your reassuring words of kindness.

REPLY
phyllisden | @phyllisden | May 4 9:38pm

Well, Gigg66 it sounds like you and your doctors do have a plan. I'm glad to hear that. I'm sure the vast majority of us have heard the same speel - you just live with these tumors, but won't necessarily die from them. So it becomes more of a "management" situation - like other chronic conditions. That's been my attitude from the beginning. If mine start to grow again, I'll make a decision then about treatment.
Keep taking care of yourself and moving forward.

REPLY
View MoreView Less
Please sign in or register to post a reply.