How many doctors did you see to get to your NETS diagnosis?

It can sure be a frustrating journey to diagnosis, can’t it? Glad they figured yours out eventually.

It took 12 years for my diagnosis after the 50+ nodules were first seen on a CT scan in 2008 checking for pneumonia. I remember my second pulmonologist saying he’d never seen so many lung nodules and couldn’t wait to show me the scan. I refused an open lung biopsy because many guesses were something benign or lung mets but where was the primary cancer? The slow growing nodules were monitored by CT scan for 12 years when the largest tumor had grown enough for a needle biopsy. During that 12 years, at least 20 physicians saw the scans and made wrong guesses all over the map. That included multiple radiologists, pulmonologists, oncologists, PCPs, oncology surgeons — you name it. Lots of wrong guesses about the reason I had a chronic cough, shortness of breath, etc. Amazing. The biopsy was forced in 2020 because I now had recurrent breast cancer and they wanted to be sure the lung tumors were not related. Not related. After the lung biopsy, I was stunned to hear it’s cancer (typical carcinoids) because I had had it for so long and was doing well aside from respiratory symptoms. Luckily, the tumors are all very slow growing. I still couldn’t figure out why I had so many tumors when most people with lung NETs seemed to have a single tumor so it was my own research that figured out I also had the very, very rare DIPNECH (only 300 documented cases today) based on a retro Mayo study I found that focused on 59 DIPNECH patients they had over a 20 year period. My oncologist hadn’t heard of it so I requested a NETs team at a nearby university hospital and they confirmed DIPNECH and lung NETs.

I was told by my Sutter Health docs that I had "benign gastric neuroendocrine carcinoid tumor," who added, "Congratulations! You've got the BEST cancer anyone could have! It'll never metastasize, and will never kill you." When I asked them to explain how to reconcile the words "benign" with "carcinoid. " I never got a reply.

Imagine my surprise when I met someone at an online NET group who had Stage 4 gastric NET that had spread to her liver and bones, and needed extensive treatment, including surgery. I've since left the incompetent GI docs at Sutter, and am being seen at UCSF. They confirmed that all gastric NETs are by definition cancer, and are malignant.

So, to answer your question, I guess I was correctly diagnosed, but by people who had no clue what it is.

Hello @pamela1685 and welcome to Mayo Connect's NETs support group. I appreciate you sharing about your experience with NETs. Your post shows the importance of seeking the opinion of a NET specialist and not relying on a general oncologist.

As this is your first post on Connect, feel free to share a little about your NETs journey as you are comfortable doing so. For example, how long ago were you diagnosed? I'm also wondering if your treatment or follow up care has changed now that you are being seen at UCSF?

Hi Teresa,
Thank you for your kind reply. I was diagnosed with gastric NET this past January. I have autoimmune atrophic gastritis, and was told 20 years ago hat I had a high possibility for developing stomach cancer. I had a routine upper endoscopy in December 2023, when they found and removed tiny but numerous tumors that were malignant, along with much larger benign polyps.
The treatment plan at UCSF is to go in annually for an endoscopy and remove the tumors as they crop up.
The only symptoms I have are decreased appetite, bloating, constipation, and weight loss due to extremely slow digestion. The irony is that everyone tells me I look great. Lol!

@pamela1685
So many of us with this diagnosis can relate to what you said about slow digestion, weak appetite, weight loss, etc. It seems to be part of NETs.

I'm glad to hear that you will be having regular follow ups to keep up with the tumors and have them removed.

Yes, NETs patients are often told about how good they look. There is even a book written on this topic called, The Good Looking Cancer. Here is a link to the book description.
--The Good Looking Cancer
https://www.amazon.com/Good-Looking-Cancer-Neuroendocrine/dp/1731358687/ref=sr_1_30?
How was the autoimmune atrophic gastritis diagnosed? By an endoscopy or other means?

My husband diagnosis came quickly. He passed out on Dec 11, 2022 and was rushed to the hospital. Unbeknownst to me, had had suffered from diarrhea and was also bleeding internally. He thought it was somehow related to the prostatectomy he had in March 2022. Two endoscopies and colonoscopy done at the hospital and he was referred out to a surgeon. Initially, they thought it was a GIST tumor but when the pathology came back, his surgery was canceled so that could run all the test for neuroendocrine tumors- labs and Pet CT CU64 Dotate. He had partial gastrectomy ( duodenum bulb) on December 29, 2022. He follows up with a NET oncologist ( was 6 months) - for labs CBC, CMP, serotonin, pancreastatin, 5-HIAA and a CT). Diagnosis/ treatment in one month. An anomaly, from my understanding, in the neuroendocrine world . His surveillance is now moved out to yearly testing with the caveat to call if become symptomatic.

Wow, I'd suspected that my gastric symptoms were caused by NET but wasn't sure, so it's very validating to learn that they're very common among us!

And thank you for the book recommendation, "Good Looking Cancer!" Haha, all things being equal, it's better to look good than not! : ) I'm definitely ordering that book. I'm SO glad to have found this community.

My autoimmune atrophic gastritis was diagnosed by an endocrinologist who was treating me for my Grave's disease. He tested me for intrinsic factor antibodies. When I tested positive, he told me I had atrophic gastritis, and that I will eventually develop pernicious anemia due to B-12 deficiency, and possibly gastric cancer. All of these have come true. It's pretty amazing that he predicted all this 20 years before I had any symptoms, without an upper endoscopy.

What a terrible ordeal that your husband has been through! I've read that NET is often discovered very late because many of us have no symptoms until the situation is dire. I'm glad that he's under the care of a good NET specialist, and hope that the worst is behind him. My very best wishes to both of you.

I was diagnosed in 1991 with IBS which kept getting worse - saw numerous Gastro doctors - all I heard was it is really bad IBS. Finally in 2021, I got very sick with bleeding - had colonoscopy and endoscopy - 19 biopsies and NET removed from duodenum - follow up with Dana Farber Onco every 6 months for CT scan and blood work which are always stable - CT scan never shows anything - I keep saying CT scan didn't show NET in 2021 and the CT scan was done a week prior to the endoscopy finding the NET. So 3 yrs later, I'm still doing the "6 month Ct Scan" dance. My present gastro, who has experience with NET, wanted my Onco to do a Pet scan head to foot to which my Onco said no, not yet. I'm 74, totally alone, work from home full time to keep my benefits, but I am reaching the point where I'll need to quit work soon. If things were different for me, I could have gone to Mayo Clinic and at least establish a protocol at the time of diagnosis. By being told it is the best cancer to have, I think what is meant is that there are so many treatment options, which is true. The diagnosis is not a death sentence, you just need to be your own advocate, stay up to date on treatments and never give up hope. Bless you all in your journey.

It's an exhausting journey to have to advocate for ourselves. It's doubly frustrating when ignorant doctors belittle us and refuse to educate themselves. Hang in there, Pippa!

It's been a sharp learning curve for me, and I'm grateful to have found this supportive and informative forum. Thank you to all of you.