Unraveling the Causes of Small Intestinal NETs

The first step in curing a disease is understanding it. Unfortunately, there is a lot we still don’t know about small-intestinal  NETs (SI-NETs). That’s why NETRF invested in an international team to look for a cause.

Researchers will work to answer these questions:

  • Is a genomic mutation for SI-NETs passed down from parent to child?
  • Does something sporadically go wrong during a normal cellular process, like a production error on an assembly line, leading a gene to be copied incorrectly —maybe part of the code gets dropped, added, or transposed?
  • Does a genomic mutation result from environmental exposure, similar to the way lung cancer can be caused by smoking and skin cancer can be caused by sun exposure?
  • Is an infectious agent responsible for damaging a healthy gene in a way that could give rise to NETs — the way HPV contributes to head, neck, and cervical cancers?

Principal Investigators

  • Matthew Meyerson, MD, PhD, Director of Cancer Genomics at Dana-Farber Cancer Institute, Professor of Pathology at Harvard Medical School, Director of Cancer Genomics at the Broad Institute.
  • Eric Nakakura, MD, PhD, Gastrointestinal Oncology Surgeon, Professor of Surgery, at University of California, San Francisco.
  • Chrissie Thirlwell, MD, PhD, FRCP, Senior Lecturer and Consultant, Medical Oncologist, University College London Cancer Institute and Royal Free Hospital.

Thus far, the team has sequenced over 80 different SI-NETs specimens to study how all the genes in each of these tumors are expressed, and, are now analyzing gene expression patterns common to SI-NETs from different individuals but different from other types of cancers.

This will answer a fundamental question: Do SI-NETs form a unique class of tumors, with a unique molecular profile?

Specific Aims of the Study

This NETRF Accelerator Grant, “Finding the causes of small intestinal neuroendocrine tumors”  got underway in 2017 and will continue through 2021. This is the team's plan to look for the genomic causes for small intestinal NETs.

  • The research team will analyze tumor specimens collected and preserved by Eric Nakakura, MD, PhD, surgical oncologist at University of California, San Francisco, using next-generation genomic sequencing performed at the Broad Institute lab of Matthew Meyerson, MD, PhD. Researchers will analyze the enormous amount of data produced from the genomic sequencing to identify patterns:
    • What inherited and acquired genomic mutations appear in the specimens?
    • Are they known to contribute to cancer?
    • How many specimens share the same errors?
  • The SI-NET tumor specimens will then be sequenced differently to analyze possible epigenetic causes. Chrissie Thirlwell’s lab at University College London Cancer Institute will look for evidence of gene expression errors. Genes use a complex communication system to give cells instructions.
    • Maybe a gene isn’t altered, but something goes wrong in how the gene is expressed.
    • A person’s environment, lifestyle, age, and more can influence gene expression.

Some funding for this grant has been provided by the Raymond and Beverly Sackler Fund for the Arts and Sciences.

To support essential NET research like this, give to NETRF.

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Maryann
2 years ago

I am a WTC survivor and have been told by the WTC HEALTH PROGRAM that my NETS and renal cell carcinoma were caused by my exposure to the toxins at that time. I’m very interested in this and I believe we should be studied as well.

Katie
2 years ago

I WANT TO TELL YOU WHAT CAUSED MY CARCINOID CANCER OR NEUROENDOCRINE CANCER, I HAD QUITE A FEW ULCER,S AND I WAS DIAGONOSED WITH H-PYLORA,AND WAS TOLD TO TAKE 3 DIFFERENT ANTIBIOTICS TOGETHER, I STARTED ON THEM AND GOT REAL SICK SO I JUST TOOK TWO OF THEM, BUT THAT DIDEN,T CURE THE INFECTION AND I WENT ON TO DEVELOPE ULCER,S WHICH IN TURN TURNED CANCEROUS. THEY TOOK OUT 10 TUMORS RANGING IN SIZE FROM 2 TO 4 CM, AND ONE WAS ON THE TIP OF THE PANCREAS AND THE OTHER,S WERE STRECHED ALONG THE INTESTINE SO THEY TOOK OUT ALL THE TUMORS AND TWO FEET OF MY BOWELS, I WAS DIAGONSED IN 2004 AND GOT OPERATED ON, THEY KEEP DOING SCANS ON ME SAID THEY DON,T SEE ANY NEW TUMORS YET I CONTINUE TO HAVE SEVERE PAIN IN MY ADOMIN AND ALL ACROSS MY WHOLE STOMACH I AM SURE THAT THIS IS CAUSED BY THE CARCINOID, YET I CAN,T GET ANY DR TO DO AN EXPLORATORY. TO CHECK AND SEE FOR SURE., BUT I THINK YOU WILL UNDERSTAND MOST OF WHAT I AM SAYING THAT I THINK CAUSED MY CANCER. HOPE IT HELP,S WITH YOUR STUDY ON THIS DREADFULL DISEASE. THANK YOU.ALL FOR STUDYING THIS TYPE OF CANCER, AND TRYING TO GET TO THE ROOT OF IT ALL.

sally edmonds
2 years ago
Reply to  Katie

I wish you well on what’s going on with you. I lost my dear brother to to a net back in Sept of 2016. He was a Veitnam vet but did not live long enough to find out if there was a correlation. He became very ill in late March and left this world on Labor day weekend after suffering horribly most from the chemo. It is my belief that the doctor should never have told him it could be treated, it was too far gone and perhaps his last months could have been more peaceful with light opoids until more needed rather than those massive doses of chemo. But that’s that. He also had had that H pylora and developed a bad ulcer. I don’t know if the cancer group of doctors sent samples off for research or not. I would certainly like to know if they could find a cure so you can keep in touch with me if you like. My brother was the second person I knew that had one of these nets, a friend’s husband, and he also was in the military

Stephanie Thompson
2 years ago

My husband and I both have been diagnosed with carcinoid. My husband, in the stomach, in 2000. His stomach was removed and he has been fine since. I was diagnosed in 2006 with tumors in different places, but they believe it started in my pancreas. I do have a tumor in my intestines. I recently had a Whipple. I worry about the possibility of my children developing a NE tumor. I hope you are successful in your research.

Brenda Laguerre
2 years ago

I lost my sister to Adenoid cystic carcinoma of a salivary gland in the roof of her mouth. She was 43 when she was diagnosed and she died when it spread to her lungs and elsewhere at 48. This was in 2001. I was diagnosed with small bowel carcinoid with mets to the liver in November of 2014. I remember vividly that my sister was told that her cancer was slow growing, did not respond to conventional chemo and radiation and there was no known treatment (at the time). I was told the exact same thing regarding my cancer except there is treatment -Sandostatin injections every month. I can’t help but wonder if there is a connection between the 2 cancers. I hope someday to find out. In the meantime I’m so very grateful for the research being done to try and determine the cause in my cancer. Like others I know with this cancer I have been eating right, exercising and leading an overall healthy life style for decades ( I’m 62 years old) . Please let me know if I can do anything to help with this research.

Cheri
2 years ago

I was diagnosed with H Pylori in 2008/9 and treated with the triple antibiotic & Omeprozel. When the exploratory internal scan was performed the Gastroenterologist said my stomach was riddled with the infection and was red raw on the scan picture provided. From that day I always worried that the chamces of me developing cancer would be strong, especially as my grandfather had stomach cancer. Prior to this infection and since, the abdominal pain I was experiencing was beyond measure yet no other firm diagnosis could be made until July 2017 when a Hepatologist decided that she was not prepared to take me on as a patient unless a biopsy was done on my ‘benign’ lesion on my liver as I’d bedn told for one year. Bingo! I had SI Net with metastasis to the liver, lymph nodes and mesentary. It is now widely suspected that I have MEN 1 which may have caused my Nets. Time will tell. I’m glad to see research is underway. Thank you NETRF, please get in touch if I can help your research in any way to help others in the future.

Kim Berry
2 years ago

I am too very interested in this study. My husband, 59, was diagnosed with Nets in March of 2016. There is no hereditary link, he had the test done as well as he was not familiar with anyone in his family having Nets. However, he was stationed at Camp Lejuene for many years and drank the contaminated water on base for years. We can not help but believe this is what caused my husbands cancer. TY so much for doing this research. It is needed for the families that were poisoned while in the military and have no other obvious reasons as to why they have Nets.
Kim Berry