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How can test be so different?
Hi, I hope all are feeling well.
For the past yr I have been undergoing many tests. 24 hr Urine positive in small bowel, Gallium PET-neg, CT enterography- positive, gallium PET- neg,. Lanreotide 1st inj, worked well. Took symptoms away. My symptoms came raging back as it was time to get another. 2nd inj. Working well.
I have an appt with surgeon who will undoubtedly won't operate. I don't feel confident and feel I'm at the start again.
How can the test be so different?
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Please make sure you’re seeing a NET specialist!
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1 ReactionThanks for your comment. I currently see a surgeon that specializes in GI cancer such as NETS. I'm not sure what else to do....
Hello. My husband was diagnosed last year with grade 1, stage 4, small bowel NET. He has been stable since then on once a month Lanreotide shots with no immeidate plans for surgery. Many NET patients continue with this monthly shot for many years with a good quality of life. Of course you have to discuss your specific situation with one or more (always good to get a second opinion) NET specialists. Below are two great resources that were helpful for us and discuss how to find specialists, among other things.
https://netrf.org/for-patients/
https://www.carcinoid.org/for-patients/diagnosis/newly-diagnosed-the-basics/
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3 ReactionsSecond opinion maybe? My test results were all over the place, including an x-ray post surgery that had "x-ray for benign tumor" printed on it.
@nannybb omygosh...it doesn't instill confidence, does it? Problem is, my surgeon is the head of GI cancers and surgery ant the Princess Margaret Hospital in Toronto. Very smart people. Who am I to question the best best? But perhaps I do need a second opinion. The Lanreotide is working so well for my symptoms. When I was due for my shot, my symptoms were returning..I'm at a loss.
a feel like I'm at square one again.
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1 ReactionI have been told more than once to get another option. My basic problem is the fact I moved from Fl. to Oregon. I had excellent doctors in Fl. Never a reason to distrust them. Here in Portland, I have no idea who to go to other than by reading others reviews, which is not the best. This whole cancer situation is frustrating to begin with. Feels like a gamble no matter what course of action you choose. I can see how you, in particular would be totally upset. Something was working for you, now seems not to. I don't know how your Healthcare system works. Is it possible to get a second opinion within the same hospital? That is the boat I am currently in. My insurance only covers a particular group of hospitals and doctors. I can somewhat have a choice, as long as I am within that network. Sure hope you find answers and peace in decision making. That, in and of itself, is half the battle.
Did the gallium scans reveal net tumors?