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Diagnosis Frustrated: How you were diagnosed with NETs?
Neuroendocrine Tumors (NETs) | Last Active: Jan 18 8:33am | Replies (39)Comment receiving replies
I too have not found my primary tumor. Excruciatingly Symptomatic. Significant weight loss. High to very high gastrin and Chromagramin A, positive H-IAA, gastric uptake on gallium, but no hot spot, clean endoscopy except for ulcers. The frustration and second guessing in my head make me so upset. I'm on otreotide every three weeks and take three injections of fast acting otrotide every day. It helps with a lot, but symptoms still break through. The burning pain, the utterly mind bending nausea are ruining my daily life.
I just want someone to hear me.
To tell me I am not a fraud.
Replies to "I too have not found my primary tumor. Excruciatingly Symptomatic. Significant weight loss. High to very..."
@rose2522
The frustration and second guessing is difficult. My husband's 1st tumor was found in 1995 between the illieum and bowell. 28 years later (2022), he was rediagnosed as Stage 4 with tumors throughout his body. I would echo the previous comments about being sure that you see a NETS specialist. We go to Rochester Mayo and have been very satisfied with his care. He has a lanriotide injection every 28 days with minimal side effects and leads a normal life. However, the mind games can be tough! We have also been happy to use Connect. It confirms that everyone with NETS walks an individual journey! Good luck to you!
@rose2522 sending you virtual hugs! You are not a fraud! My husband’s NET was only found because his primary doctor has him come in for bloodwork due to only having one kidney, and didn’t like the protein levels he was seeing, so he ordered an ultrasound and couldn’t really see anything, and then ordered a CT scan which showed lesions in his jejunum and his liver. His doctor feels like his began in his jejunum and then spread to liver. We were immediately referred to an oncologist who had been giving him a shot every 28 days, but they stopped the injections (no idea why). We have left that dr and found a NET specialist, who has confirmed the injections should have never been stopped and was quite baffled by that action taken. These types of tumors are very illusive indeed. If my husband’s primary doctor wasn’t so thorough we would have never known. The only symptom he really had was bad indigestion and started to have some bowel issues. His new oncologist says his tumors have likely been there for a very long time. You aren’t alone, and we definitely feel all of your frustration. We will go next week to have a consultation with a surgeon who specializes in NETs because now there are a couple of lesions in his abdomen.
Hello @rose2522 and welcome to Mayo Connect. I see that @dbamos1945 has already posted with you and offered suggestions for a Gallium-68 PET Scan and consulting with a NET specialist. Here is a link with information about this specific PET Scan that is used to find NETs, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
From your post, I take it that no biopsy has been performed since the endoscopy showed only ulcers. Are you being treated for ulcers with medication? How long have you had this problem?
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@rose2522
Did they biopsy your ulcers on endoscopy?? That was my primary