1. < Neuroendocrine Tumors (NETs)
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Diagnosis Frustrated: How you were diagnosed with NETs?

Posted by pokeymama @pokeymama, Mar 23 4:55pm

Can you tell me how you were diagnosed? I have had several G68 pet scans, (nothing lighting up intensely), multiple endoscopy and they cannot find the tumor that is causing my problems (high CgA, high gastrin, severe carcinoid syndrome, stomach lining covered with neuroendocrine cells, etc) Until they can ‘find’ a tumor and biopsy it my only treatment is Octreotide every month. My GI doc says he knows I have nets but cannot find them! I’m so frustrated with being so sick and no diagnosis. Thank you for your time, I hope to find a solution soon
Renee

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

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rkklinger | @rkklinger | Nov 11 2:09pm
In reply to @rose2522 "I too have not found my primary tumor. Excruciatingly Symptomatic. Significant weight loss. High to very..." + (show)
Profile picture for rose2522 @rose2522

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.

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@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!

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rose2522 | @rose2522 | Nov 11 10:41pm
In reply to @rkklinger "@rose2522 The frustration and second guessing is difficult. My husband's 1st tumor was found in 1995..." + (show)
Profile picture for rkklinger @rkklinger

@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!

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@rkklinger
Thanks for your reply! I don't know why it backs up on me. My care is run by a neuroendocrine oncologist at Univ of Chicago. I have a local oncologist to receive otreotode and follow labs. Nothing is clear cut with this experience.

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rose2522 | @rose2522 | Nov 11 10:49pm
In reply to @dbamos1945 "@rose2525: I feel your frustration! NETS primary tumors tend to be illusive and difficult to discover...." + (show)
Profile picture for dbamos1945 @dbamos1945

@rose2525: I feel your frustration! NETS primary tumors tend to be illusive and difficult to discover. In my case the primary suspicious tumor was playing “peek-a-boo” with my Gastro doc during an exploratory endoscopy to reveal a cause of my symptoms (At the jeouno-duodenum small intestine). In reflection the Gastro doc asked me if I would agree to a repeat endoscopy to “take another look at this area” - he was able to get a biopsy of this suspicious illusive area; therefore Pathologist diagnosed Carcinoid Cancer & further verified by 2nd Pathology opinion! Unfortunately, upon further investigation metastases found in the liver.
Question: Can you get a Gallium 68 PET Scan? It should reveal any Samanostatin-receptive areas of NET tumors; perhaps this will lead to a verified NET biopsy (or maybe even a surgical removal). It is good that your Oncologist has prescribed the 28 day shots that can reduce symptoms and might control tumors. You have the required lab test results… just need a biopsy to reveal the Grade, Stage & Stain Results plus perhaps further specific scans that will help determine best treatment!
Have you consulted with a Neuroendocrine Medical Oncologist? They will provide your best advice on treatments and guidance determining your decisions with the help of a Tumor Board recommendations. They can be found researching “Cancer Hospitals/University Medical Centers”. We are so fortunate when we find a NET specialist (Oncologist, Surgeon, Radiologist, Nuclear Medical Professionals). NET cancer is a rare speciality, but NET cancer is different than other cancers and each NET patient reacts differently. We need a specialist!
I believe this is NET patients most important decision! No matter that we have to travel to get the care we NEED! Best of health to you. Bette

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@dbamos1945 thank you for taking the time to answer. I am under the care of a neuroendocrine oncologist at the University of Chicago. Just had my latest Gallium PET. Uptake in gastric/stomach, but no hot spots.

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rose2522 | @rose2522 | Nov 11 10:54pm

Oh my heavens! We could be twins. It is so, so hard.

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djchambers | @djchambers | Nov 12 9:53am

They found myNET tumor in the small intestine after numerous endoscopies also. It was finally an endoscopy with ultrasound where the doctor found and biopsied my tumor and two lymph nodes. Apparently there is a part of the small intestine that they cannot reach with endoscopy or colonoscopy.

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tgsenn70 | @tgsenn70 | Nov 13 10:02am
In reply to @rose2522 "I too have not found my primary tumor. Excruciatingly Symptomatic. Significant weight loss. High to very..." + (show)
Profile picture for rose2522 @rose2522

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.

Jump to this post

@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.

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siluka | @siluka | Nov 13 2:00pm

Hi my nets were found via ct scan after going into hospital for a uti. they were in my ileum. did multiple testing endoscopy colonoscopy, enteroscopy (down throat and up the backside) then pillcam (this was the one that confirmed for sure) petscan also lit up. good luck

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Teresa, Volunteer Mentor | @hopeful33250 | Nov 15 4:33pm
In reply to @rose2522 "I too have not found my primary tumor. Excruciatingly Symptomatic. Significant weight loss. High to very..." + (show)
Profile picture for rose2522 @rose2522

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.

Jump to this post

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 | @rose2522 | Nov 16 7:04pm

Hi!
Thank you ❤️so much for all your reply’s. A lot of your questions and comments were similar, so I just thought I might post a reply here. I’m going to include as much info possible-so kind of using short hand.
I have been suffering since about 2012, possibly earlier. So many doctors, so many telling me I was deluded. Hysterical. Awful and traumatizing, PTSD every time I have to see a new Dr.

Referred to Mayo twice for suspected carcinoid. 5-HIAA positive, high CgA, high gastrin but I couldn’t afford to make another trip. Had multiple endoscopy’s, gallium PET scans. Capsule endoscopy.
Severe ulcers in stomach, but also on small intestines.
Always High to very high Gastrin and CgA that fluctuate in tandem. Mind bending nausea, and indescribable acid pain in abdomen. I’m constantly regurgitating mouth fulls of gross. Diarrhea is intermittently bad, but nausea and pain are worse.

PET’s/endoscopy’s reveal no tumor. However, my last two PET scans showed definitive uptake throughout stomach. Just no hot spots.
I do see a neuroendocrine oncologist at Univ. of Chicago, Dr Polite.
I do take PPI’s and am aware it can raise gastrin and CgA, though usually not so high. Also, they were high before starting on PPI’s.
Otreotide every three weeks for about 5 years-daily injections of fast acting otreotide-but once again feels like it is becoming less effective and I’m maxed out on otreotide.
I’ve lost over 30 pounds unintentionally in the last year or so, ( but I’m not going to lie, I don’t want to gain them back, lol)

I cannot begin to thank you for taking the time to read this post. Not finding the tumor or gastronoma pulls the rug right from under my feat ever time. Like I don’t deserve to be here. Yes, haha, I do have a therapist 😂
Gratefully, Rose

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siluka | @siluka | Nov 17 2:55pm
In reply to @rose2522 "Hi! Thank you ❤️so much for all your reply’s. A lot of your questions and comments..." + (show)
Profile picture for rose2522 @rose2522

Hi!
Thank you ❤️so much for all your reply’s. A lot of your questions and comments were similar, so I just thought I might post a reply here. I’m going to include as much info possible-so kind of using short hand.
I have been suffering since about 2012, possibly earlier. So many doctors, so many telling me I was deluded. Hysterical. Awful and traumatizing, PTSD every time I have to see a new Dr.

Referred to Mayo twice for suspected carcinoid. 5-HIAA positive, high CgA, high gastrin but I couldn’t afford to make another trip. Had multiple endoscopy’s, gallium PET scans. Capsule endoscopy.
Severe ulcers in stomach, but also on small intestines.
Always High to very high Gastrin and CgA that fluctuate in tandem. Mind bending nausea, and indescribable acid pain in abdomen. I’m constantly regurgitating mouth fulls of gross. Diarrhea is intermittently bad, but nausea and pain are worse.

PET’s/endoscopy’s reveal no tumor. However, my last two PET scans showed definitive uptake throughout stomach. Just no hot spots.
I do see a neuroendocrine oncologist at Univ. of Chicago, Dr Polite.
I do take PPI’s and am aware it can raise gastrin and CgA, though usually not so high. Also, they were high before starting on PPI’s.
Otreotide every three weeks for about 5 years-daily injections of fast acting otreotide-but once again feels like it is becoming less effective and I’m maxed out on otreotide.
I’ve lost over 30 pounds unintentionally in the last year or so, ( but I’m not going to lie, I don’t want to gain them back, lol)

I cannot begin to thank you for taking the time to read this post. Not finding the tumor or gastronoma pulls the rug right from under my feat ever time. Like I don’t deserve to be here. Yes, haha, I do have a therapist 😂
Gratefully, Rose

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@rose2522 i had constant GERD for years many endoscopies and testing showed nothing. 2015 had cyst and ovary removed biopsy showed net on it. flew to brisbane and had appendix removed and washing done. they looked around while i was under but showed nothing. next 6 years constant GERD etc done only to go in hospital for a uti 2021 and demanding a ct scan and this showed many nets in intestine. as per my earlier post 1.5m ileum removed and have not had any symptoms of gerd since. do have liver lesions in which is being monitored.

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