Feature: Dr. Richard Warner, Professor of Medicine at Mount Sinai School of Medicine in New York and Medical Director of the Carcinoid Cancer Foundation (CCF).

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Warner began quest for NET cancer answers in 1950s 

By Becky Martins

WHITE PLAINS, N.Y. — A patient is improperly diagnosed and receives treatment for the wrong condition. Meanwhile, dangerous cancer cells spread, ticking like internal bombs.

Modern medicine has betrayed the patient, failing to identify and defuse the lurking evil.

This is the frightening reality of neuroendocrine tumors (NETs) and carcinoid cancers.

On average, 75 percent of NET cancer patients are initially improperly diagnosed and treated. Getting a correct diagnosis can take more than five years — by which time over 70 percent of these tumors have metastasized.

By 2011, in the United States alone, over 110,000 NET cancer cases have been reported, but it is expected the number of unreported and misdiagnosed cases is much higher. Common misdiagnoses include Irritable Bowel Syndrome (IBS) and Crohn’s disease.

“Diagnosis isn’t difficult,” Dr. Richard R.P. Warner, Professor of Medicine at Mount Sinai School of Medicine in New York City and Medical Director of the Carcinoid Cancer Foundation (CCF) said. “What is more difficult is even considering the diagnosis. If we increase awareness of NET cancer, this leads to improved diagnosis and speedier treatment.”

Dr. Warner has devoted his life’s work to proper diagnosis and treatment of NET cancer. He has also placed equal importance on increasing awareness of the condition within the medical community.

Neuroendocrine cells receive messages from nerve cells that release hormones into the blood. NET cancers are a cluster of abnormally growing cells located in or near the endocrine glands. There are a variety of NET cancers, the most common being carcinoid tumors. Less common types arise from the pancreas.

Carcinoid tumors typically affect the GI tract, pancreas, or lungs and can be asymptomatic. When certain carcinoids metastasize, producing dangerously high levels of hormones or peptides, including serotonin, this can cause carcinoid syndrome.

Patients with carcinoid syndrome experience a variety of symptoms, such as flushing, asthma or wheezing, diarrhea, abdominal cramping, heart palpitations, or even congestive heart failure, due to serotonin’s effect on the heart valves. But not every patient with carcinoid tumors develops carcinoid syndrome.

“Treatment for NETs can be quite varied, due to all the factors involved,” Dr. Warner said. “There are two aspects of general treatment for carcinoid syndrome:  treating symptoms, when present, and preventing the spread of tumors.”

High serotonin levels, and symptoms related to that, can sometimes be corrected through a special diet and prescription drugs. There is also the option of surgery, chemotherapy and, in rare cases, liver transplants.

A breakthrough treatment that injects microscopic radioactive isotopes into the blood supply of tumors, has made significant inroads. For inoperable cases, tumors may be treated with injections of octreotide and/or interferon to inhibit or reverse tumor growth. Other techniques use cryoablation, a probe to freeze and destroy tumor metastases, or radio frequency ablation.

Patients suffering from advanced pancreatic NET cancer may benefit from two new prescription drugs, Novartis’ Afinitor (everolimus) and Pfizer’s Sutent (sunitinib malate). Both drugs, which delay tumor growth and reduce disease progression, were approved by the FDA for pancreatic NET cancer patients in 2011.

But while treatments delay the progression of the disease and alleviate symptoms, there is still no cure for NET cancer, other than complete removal by surgery, which typically requires early diagnosis. As a result, Dr. Warner has dedicated his life to the condition.

Considered one of the founding fathers of NET cancer research, Dr. Warner began his medical career in 1954 with an interest in oncology, but found it lacked a formal accreditation system for specialists. He then moved onto gastroenterology, specializing in tumors of the GI tract. As a first year fellow at Mount Sinai in 1954, Dr. Warner consumed all the medical literature available on the digestive system.

The same year, he stumbled upon an article in the American Heart Journal that left a lasting impression on his career, as well as modern medicine.

“The article described a new syndrome in which over 12 cases were listed, mostly from Nordic countries, as well as a group from Minnesota who were of Nordic origin,” Dr . Warner said. “The group of patients was experiencing valve lesions of the heart, recurrent face flushing, and tumors of the intestine. The article described this as carcinoid syndrome.”

This was the first time Dr. Warner had heard of the condition. It was from this article the syndrome drew its formal name.

The next year, while serving in the U.S. Air Force during the Korean War, Dr. Warner saw a patient with similar symptoms – diarrhea, face flushing, tumors, and metastases of the liver – yet she had no lesions of the heart valves.

Dr. Warner also discovered the patient had survived lung cancer eight years before. Suspecting a tie to NET cancer, he boarded a plane to Oklahoma City, where the patient had been operated on, and tested her lung samples. Dr. Warner soon discovered bronchial adenoma of the carcinoid type, instead of the lung lesions normally associated with lung cancer, as originally reported.

The discovery was the first lung carcinoid known to have caused carcinoid syndrome.

Returning to Mount Sinai to publish his findings, Dr. Warner was introduced to another patient with similar symptoms to the patient in Korea. To assist in diagnosis, Dr. Warner tested the patient’s urine for 5-HIAA (5-hydroxyindole acetic acid). High levels of 5-HIAA, the waste product of serotonin, indicates carcinoid syndrome. As Dr. Warner expected, the test came back positive.

From these cases he wrote and published his first article on carcinoid syndrome – and was soon heralded as an expert on the condition.

“I was always intrigued with esoteric and unusual diseases,” Dr. Warner said. “NET cancer was very challenging and interesting, and I was fulfilling a need others weren’t handling.”

Dr. Warner still attributes his passion for NET cancer  to the American Heart Journal article.

Following his first publication on carcinoid syndrome, Dr. Warner worked with more patients, and his lab work soon branched out. He worked for over 40 years at this Mount Sinai research laboratory, receiving specimens from all over the east coast, while continuing a private practice. When the tests became more commonly available and the lab shut down, he furthered his efforts in NET cancer treatment, research and awareness, as well as in his private practice.

Today, Dr. Warner is a professor of medicine at Mount Sinai, training doctors at the new Center for Carcinoid and Neuroendocrine Tumors in New York, for which he serves as Director.  As a full-time faculty member, Dr. Warner still sees over 150 new carcinoid cases each year. He has published over 100 scientific articles on NET cancer, has spoken at over 100 lectures and meetings, and has created countless peer review articles, case reports, letters to the editor, chapters, abstracts, webcasts and videos on the condition.

In addition to his full-time work, Dr. Warner has dedicated his life to various philanthropic efforts related to NET cancer, including serving as Medical Director of the Carcinoid Cancer Foundation (CCF).

“For the first 10 years of my medical career, I operated under a research grant from the National Institute of Health (NIH),” Dr. Warner said. “Then things changed in Washington. Under the (Richard) Nixon era, it became more complicated to be a researcher and receive funding.”

Dr. Warner’s patients, family, and friends responded by establishing the Carcinoid Tumor and Seratonin Research Foundation in 1968, in support of Dr. Warner’s research. In 1995, the name changed to the Carcinoid Cancer Foundation.

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“Our mission is to educate and increase awareness in patients and professionals,” Dr. Warner said. “We also encourage and fund notable research.”  Until recently, the U.S. government didn’t fund NET cancer research, as most grant money went to more common diseases and bigger projects.

CCF filled this void by awarding such grants as it was financially able. The organization is funded by contributions from individuals, businesses and corporations, and foundations.

CCF funding assistance has included travel fellowships for young researchers, which absorb the travel costs associated with speaking at medical meetings and conferences. CCF has also funded new and promising treatments, such as the radioactive isotope research underway in Texas.

“This is a very effective treatment,” Dr. Warner said. “It’s been used in Europe for over 10 years, and the FDA has finally allowed this treatment experimentally in the United States. But it takes lots of money to do the research.”

CCF assisted by providing seed money to the center starting the project. Dr. Warner hopes in a few years, the radioactive isotope treatment will become generally available and will be covered by insurance.

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CCF, through its awareness and education endeavors, also informs the medical and patient community of new clinical prescription drug trials. This helps disseminate information on the new treatments, as well as helping to recruit patients who are eager to get involved.

In addition, CCF helped found and fund the North American Neuroendocrine Tumor Society (NANETS) in 2006. NANETS is a nonprofit, national society for doctors wanting to improve NET disease management, and increase research and educational opportunities. Dr. Warner, a founding member and former member of the board, helped form NANETS by cross-fertilizing efforts with ENETS (European Endocrine Tumor Society), a similar organization started in Europe five years earlier.

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Through his work at Mount Sinai, as well as at CCF and NANETS, Dr. Warner continues to fight for proper NET cancer diagnosis and treatment, as well as increased awareness within the medical community.

“I’ve always had a great deal of empathy for patients who aren’t being diagnosed and treated correctly,” he said. “If you don’t suspect it, you can’t detect it.”

This story provided by Walking with Jane. Inc., a 501 (c) (3) non-profit dedicated to eradicating NET cancer. For more information about NET cancer or Carcinoid Syndrome contact walkingwithjane@gmail.com or visit our website at walkingwithjane.org.

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