This document was prepared in order to further the Carcinoid Cancer Foundation’s educational goals and inform you about the existence and characteristics of neuroendocrine cancer. While the information contained herein represents up-to-date information about neuroendocrine cancer, this information should not be used as a substitute for a visit with your doctor if there is any question about your health.
The Review of Neuroendocrine Cancer was initially written by Richard R.P. Warner, MD, neuroendocrine cancer specialist and founder of the Carcinoid Cancer Foundation. We gratefully acknowledge the contributions of Satya (Nanu) Das, MD, MSCI, Lead of the Neuroendocrine Tumor Program at Vanderbilt-Ingram Cancer Center in Nashville, Tennessee, who updated the Review in 2021. With thanks also to Edward M. Wolin, MD, Director of the Center for Carcinoid and Neuroendocrine Tumors at Mount Sinai Hospital in New York, for his assistance with the Review.
Con el más profundo agradecimiento a la Dra. Jaydira Del Rivero, Directora de la Clínica de Tumores Raros/Programa de Tumores Neuroendocrinos del Instituto Nacional del Cáncer, por traducir la Revisión del Cáncer Neuroendocrino al español.
Introduction and Basic Concepts
You must first understand some basic concepts about the body and how tumors develop and grow. Every part of the body from the skin to your heart, muscles, glands and all other organs, is composed of microscopic cells just like the bricks that make up the structure of a building, but unlike building bricks the body’s cells are formed in classes specialized in appearance, structure and function for the purposes of the organ or the part they form. Furthermore, unlike the bricks of a building, which once formed and set in place are unchanging for the life of the building, the living cells of the body are constantly degenerating, wearing out, and being regenerated/replaced by identical cells. This replication process is going on continuously and is regulated by complex genetic and hormonal controls from both within the individual cells and also by influences from other parts of the body. When something goes wrong with this delicate, complex regulatory system, cell replication sometimes proceeds in an unregulated fashion, resulting in a tumorous growth (neoplasm). If this overgrowth is somewhat limited and does not spread to other areas or threaten to squeeze out or replace adjacent structures, it is considered to be a benign tumor; that is, not life threatening. However, if the growth is more aggressive and threatens surrounding tissues or sends “seedlings” (metastases) to grow in distant areas then it has potential to be fatal and is considered malignant; that means it is a cancer.
There are a few types of growths that are midway between these two classifications of benign and malignant. Neuroendocrine tumors (NETs) are the most often occurring of these rare types of “midway” growths. They have been called “cancers in slow motion” because even though NETs have the potential to metastasize and be fatal, they tend to grow so slowly that people diagnosed with these tumors usually live for many years, and sometimes a normal lifetime. The wide variety of treatments now available makes the outlook for most patients with the more aggressive NETs more hopeful than it used to be – but more on this later.
Neuroendocrine Tumors – What Are They? Benign or Malignant?
Relative newcomers to medical recognition, neuroendocrine tumors were first identified as a specific, distinct type of growth in the mid 1800’s, and the name “carcinoid” was first applied in 1907 by Siegfried Oberndorfer in Europe in an attempt to designate these tumors as midway between carcinomas (cancers) and adenomas (benign tumors). In more recent years, carcinoid tumors have come to specifically refer to NETs originating outside the pancreas.
Neuroendocrine tumors were found to arise from the cells of the Diffuse Neuroendocrine System, enterochromaffin cells (glandular endocrine-hormone producing cells) widely distributed in the body but found most commonly in the lungs and then, in decreasing frequency, in the small intestine, rectum, appendix, and pancreas. Much more rarely, these cells can be located in the ovaries, testes, liver, bile ducts and other locations. These cells have special peculiar features that make them identifiable under the microscope. They stain in a special way when put in contact with silver- containing chemicals. Special stains for the particular hormones that enterochromaffin cells can make will identify the hormone substances in carcinoid tumor cells and thereby confirm the diagnosis of the microscopic exam on biopsied NETs.
One of the most important features of a NET is the grade it is assigned. Grading is done by a pathologist and is typically most important for low grade NETs (all poorly differentiated neuroendocrine carcinomas are by definition high grade). For gastrointestinal and pancreatic NETs, tumors are assigned a grade based upon features such as the mitotic index (how fast cells are dividing under microscope) and Ki-67 index (another measure of cellular replication). For lung NETs, tumors are assigned a grade based upon the mitotic index.
Only as recently as 1954 was carcinoid syndrome first described and accepted as a specific disease entity. Thorsen, Biorck, Björkman and Waldenstrom, a group of doctors in the United States and Scandinavia, first recognized the nature of the various symptoms associated with some NETs that have become known as carcinoid syndrome and they described it in a medical journal. This syndrome, which will be discussed in greater detail later, consists of a group of symptoms and findings on physical and laboratory examination that are caused by the potent substances produced by neuroendocrine tumors.
In the early 1990’s the development and availability of octreotide (Sandostatin) by the Sandoz Pharmaceutical Company (now Novartis) provided an important drug for the treatment of carcinoid syndrome and for NETs in general. This drug is derived from the naturally occurring hormone somatostatin. In Europe, the United States and some countries in other parts of the world other somatostatin analogs such as lanreotide (Somatuline Depot) (Ipsen) are also used.
The incidence (new cases per year) and prevalence (overall number of patients with the cancer) of NETs has risen steadily over the last 4 decades. In 2012, there were 7 cases of NETs per 100,000 individuals in the United States. Comparatively, in 1973, this number was 1 case(s) per 100,000. Nearly 50% of this increase can be attributed to the fact that more patients are undergoing CT or MRI scans and that the quality of these scans has improved significantly. Additionally, awareness of NETs in the medical community and the general public has increased significantly. However, the other reasons for this increase are not yet well understood. The incidence of neuroendocrine tumors varies according to primary tumor origin. From highest to lowest, the incidence of NETs follows the following order:
- lung – 24%
- small intestinal – 19%
- rectal – 16%
- pancreatic – 12%
- stomach – 6%
- appendiceal – 5%
- colon – 3%
There are also some unusual and extremely rare locations from which NETs may arise or to which they may spread and include the gallbladder and bile ducts, the ovaries, the testicles, the urinary bladder, the prostate gland, the breast, the kidneys, the brain (usually only seen in cases of high-grade neuroendocrine carcinoma) and the thymus gland and in some very rare cases, the eye and the ear.
Because many patients live for many years with their disease, NETs arising in the gastrointestinal tract and pancreas make up the second most prevalent category of gastrointestinal cancer after colorectal cancer. With regards to disease stage, at the time of diagnosis, patients have localized, regional (with lymph node involvement) and distant disease in 50%, 20% and 30% of cases, respectively.
The second most common location from which NETs arise is the small intestine. Tumors of any kind in the small intestine are rare and comprise only 1% of all the cancers of the gastrointestinal tract. However, NETs comprise about 50% of all small intestinal malignancies. Their size when first diagnosed is very important since the likelihood of having already spread is in direct proportion to their size. If the tumor is greater than 2 cm in diameter (almost 1 inch), chances of spread are greater than 50%. Initially, the tumor just grows into the wall of the intestine from the lining where it starts. However, eventually it may go through the wall and then extend into nearby lymph nodes, lymph channels, and blood vessels and can later spread to more distant locations such as the liver, peritoneum, bone, lungs, and even the heart.
Neuroendocrine Tumors of the Gastrointestinal Tract
Small Intestinal NETs
Statistics suggest that 1% of the population will grow tiny, medically insignificant NETs sometime in their life, most often in the intestinal tract. For reasons which are not fully understood, in some individuals these NETs will grow larger and become diagnosable. NETs of the small intestine make up 50% of all small intestine cancers. These tumors originate in the wall of the small intestine. Unfortunately, due to difficulties in making an early diagnosis up to half of patients can have metastatic disease at the time they are initially diagnosed. Approximately 50% of patients with small intestine NETs will develop distant spread (metastases) and roughly 1/3 of those that have spread will develop carcinoid syndrome (this will be discussed later in this article).
Rectal NETs are often diagnosed at an early stage when the tumors are still small. These tumors are often incidentally discovered at time of colonoscopy and when they are smaller than 2 centimeters in diameter can often be removed with endoscopic surgery rather than a much larger type of rectal surgery. As with all NETs, smaller tumors have the highest chance of cure but it is critical that the appropriate procedures be performed to completely remove the cancer. Most rectal carcinoids less than 2 centimeters in diameter can be removed with a smaller procedure performed with a transrectal ultrasound. However, those which are greater than 2 centimeters or have aggressive features should be removed by a surgical procedure similar to procedures performed for ordinary rectal cancer.
Stomach NETs (Gastric NETs)
Neuroendocrine tumors originating in the stomach are categorized differently from other NETs. Beyond being assigned a grade, these NETs are also categorized into three types:
Type 1. These are associated with pernicious anemia or other conditions causing degeneration of the stomach lining with loss of normal gastric acid production. They are usually multiple, small and even microscopic in size. They infrequently spread and consequently have a very good prognosis. Surgical removal of the end portion of the stomach (antrum) usually stops production of the hormone gastrin and can lead to shrinkage of these tumors. In some cases, they can also be treated with somatostatin analogs such as octreotide or lanreotide.
Type 2. A few gastric carcinoids can occur as part of the MEN-1 syndrome. These are usually slow growing and they are associated with other endocrine gland tumors in the same individual. Because they produce the hormone gastrin, they often cause multiple ulcers in the stomach and duodenum and cause diarrhea.
Type 3. Type 3 gastric carcinoids arise in the stomach without any special predisposition, just like most carcinoids of the intestinal tract. They can grow to a large size, and approximately 50% of cases will have spread outside the stomach. They may cause discomfort or bleeding and should be managed more aggressively.
An appendiceal NET most often occurs at the tip of the appendix. Approximately 50% of all appendix tumors are NETs. This kind of neuroendocrine tumor usually does not cause symptoms, and is most often found incidentally at the time of appendectomy. An appendiceal NET which is confined to the appendix has a high chance of successful treatment with surgery. Early cases can be successfully managed by a simple laparoscopic appendectomy although some more advanced cases require more complex surgery. Of all NETs, those arising in the appendix are least likely to metastasize (spread). When the tumor is at least 2 centimeters in size or invades into tissue called the mesoappendix, a simple appendectomy is not sufficient and a larger surgical procedure (called right hemicolectomy) is needed. Of all NETs, those arising in the appendix demonstrate the most indolent or benign behavior. Patients with appendiceal NETs demonstrate only very rare distant spread and 87% of people with tumors which are removed surgically are alive after 5 years. A NET is found usually by accident in 1 of every 200-300 appendices removed at surgery.
The second least malignant of these tumors are rectal NETs. Patients with these tumors demonstrate a 5-year survival rate of more than 70%.
The lung is the most common location for NETs to arise. Lung NETs are often associated with their own special peculiarities, diagnostic approaches and forms of treatment. An excellent summary of this subject can be found on the American Cancer Society’s website: Lung Carcinoid Tumor Information.
What Is Carcinoid Syndrome?
NET cells can make many types of hormones and peptides. Patients who have such tumors are said to have “functional” neuroendocrine tumors. Small intestinal NETs are the NET tumor type which most commonly secrete hormones. NETs which produce large amounts of hormones and other potent chemical substances can cause hot red flushing of the face, neck and torso, watery diarrhea, and asthma-like wheezing attacks. These symptoms collectively fall under the umbrella of symptoms called carcinoid syndrome. Carcinoid syndrome episodes may be very infrequent at first but gradually can occur more often and when severe enough, can be associated with low blood pressure, shortness of breath and fainting. Alcohol or stress (physical or emotional) sometimes provokes attacks but can also occur spontaneously. After a while, the flushing may become persistent in some individuals. The diarrhea may also become chronic and accompanied by weight loss. Beyond symptoms alone, the hormones can cause heart valve damage (most commonly right-sided heart valves) or other cardiac disturbances in patients such as abnormal heart rhythms. Carcinoid valve disease ultimately can result in heart failure. Carcinoid valve disease, when significant, is life threatening unless the diseased valves are replaced. In some cases, the symptoms of carcinoid syndrome resulting from the hormones and chemicals produced are worse than the symptoms from the growth of the tumor itself.
In rare circumstances, carcinoid syndrome can also result from primary NETs from the lung, ovaries, and other organs.
It is not yet entirely clear as to which of the substances are responsible for each of the symptoms of carcinoid syndrome. However, almost all of these tumors make serotonin and bradykinin. Other substances whose names you may sometimes come across in connection with these tumors and which are often made in association with neuroendocrine tumors are: substance-P, pancreastatin, neurotensin, pancreatic polypeptide, neurokinin-A, motilin and atrial natriuretic hormone (ANH), as well as other peptide hormones.
Symptoms of carcinoid syndrome can be effectively treated by using somatostatin analogs (octreotide or lanreotide), by an anti-serotonin drug known as telotristat ethyl, or by reduction in the volume of metastases in the body (by surgery, liver-directed therapy, PRRT, or other systemic anti-cancer treatments).
Other NETs can produce different hormones and thereby cause syndromes other than carcinoid syndrome. This is relevant because while pancreatic neuroendocrine tumors typically do not secrete serotonin, they can secrete other hormones such as glucagon, gastrin, insulin or VIP. These cause the following syndromes: glucagonoma syndrome, Zollinger- Ellison syndrome, insulinoma, and Verner-Morrison pancreatic cholera WDHA. Read more here: https://bit.ly/endocrinesyndromes.
Nonfunctioning NETs can silently grow for many years between the onset of any symptoms and the diagnosis. Depending on the site of the original tumor, some symptoms can include unexplained abdominal pain, swelling in the right side of the abdomen, abdominal bloating/firmness and fullness. Usually at that time, a CT or MRI scan is performed which suggests a cancerous process. The diagnosis however is typically established by biopsy.
Functional NETs are often diagnosed earlier, particularly if they release hormones which produce symptoms of carcinoid syndrome or other syndromes. The diagnosis of carcinoid syndrome usually can be confirmed quickly by doing a plasma (blood) 5-HIAA test or 24-hour urine 5-HIAA. 5-HIAA stands for 5-hydroxy indole acetic acid which is the main breakdown (waste) product of serotonin. Though previously the 24-hour urine test was the only means of quantifying 5-HIAA, a more recent blood-based test has demonstrated the same detection capacity. Certain foods and medicines must be avoided for a day or two before, and on the day of the urine collection, since they can cause false test results. These include: bananas, pineapple and its juice, red plums, avocado, walnuts and other nuts, kiwi fruit, tomatoes, various cough medicines, muscle relaxing medicines, acetaminophen (Tylenol), caffeine, fluorouracil, iodine solutions (Lugol’s solution), phenacetin, MOA inhibitors (certain antidepressant drugs), isoniazid, and phenothiazine drugs (Compazine, Thorazine). For more information on how to prepare for a 24 hour urine test click here.
In addition to initial CT or MRI scans which often detect the neuroendocrine tumor as described above, it is important for patients to undergo somatostatin receptor-based imaging soon after. Previously, somatostatin receptor-based imaging was done through an Octreoscan. Now, the Octreoscan has largely been replaced by dotatate PET scans (gallium-68 or copper-64). The dotatate PET scans can detect many more lesions compared to the Octreoscan, almost like a high-definition television versus standard definition television. If available, the dotatate PET scans should always be done for patients with newly diagnosed neuroendocrine tumors. The reasons to undergo dotatate PET scans are two-fold: first, to fully see if there are other disease sites not seen on the CT or MRI (even to identify tumors which may have been missed on the CT or MRI) and second, to see if the neuroendocrine tumor expresses a receptor called somatostatin. Most low-grade neuroendocrine tumors express somatostatin receptor; however, it is exceptionally important to know this because the presence of this receptor informs the treating oncologist of whether treatment options such as a somatostatin analog (octreotide or lanreotide) or peptide receptor radionuclide therapy are options. Oncologists typically do not always order dotatate PET scans to follow a neuroendocrine tumor over time; however, it is important to undergo a dotatate PET scan at least initially after diagnosis.
Patients with well-differentiated NETs typically have slow growing disease. However, the factor which most dictates the pace of tumor growth is the grade of a tumor. Well-differentiated NETs typically come in 3 grades: grade 1, grade 2 or grade 3. A grade 1 tumor is the slowest growing relative to grade 2 and grade 3 tumors; however, grade 1 and grade 2 tumors are usually referred to as low grade tumors. Patients with low grade tumors which have not spread can be treated with surgical removal alone, and can potentially be cured.
Survival times for patients can vary based upon both tumor grade and tumor stage (local, regional (with involved lymph nodes) and distant). The median survival times for patients with low grade gastrointestinal or pancreatic NETs typically range from 6 – 30 years. The median survival times for patients with low grade lung NETs and unknown primary tumors range from 5-20 years. When looking at survival times based upon tumor stage, the median survival for patients with local disease is 12-30 years. The median survival for patients with regional disease is 4-12 years. The median survival for patients with distant disease is typically 2-4 years. An important caveat is that these survival times are median values, not average values, and do not necessarily apply to individual patients. Many of these values were also based on patient outcome data before the incorporation of recent treatment advances such as peptide receptor radionuclide therapy (PRRT).
Is There a Cure? What Treatments Are Available?
NETs vary greatly in their size, location, symptoms and growth. Therefore, the treatment in each case should be individualized to what is best for each individual patient.
Surgery, with complete removal of all of the tumor tissue, is the first and best treatment when it is possible. If NETs are detected early, have not spread, and are removed in a complete manner, this may result in a permanent cure. However, even when all tumor tissue cannot be removed, surgery may be necessary for various purposes such as relief of intestinal obstruction or control of intestinal bleeding. Sometimes in patients with unchecked carcinoid syndrome, removing large portions of the tumor (debulking) can effectively reduce the amount of harmful hormones being produced. Before surgical debulking is considered however, it is important to have your case discussed in a multidisciplinary tumor board where there is input from multiple surgeons, medical oncologists and interventional radiologists. Surgeons and interventional radiologists can use non-surgical techniques such as a freezing probe (cryoablation) or radiofrequency ablation (RFA) to destroy neuroendocrine tumor metastases in the liver when they are either not surgically accessible or may be changing differently from the remainder of the disease (growing when all other sites of disease are stable). Another way to debulk unresectable neuroendocrine tumors that have spread to the liver is to inject the liver artery supplying blood to the metastases with a combination of embolic material (beads) and chemotherapy drugs or with beads alone. Chemoembolization therapy shuts off the blood flow and oxygen supply to the tumors while also exposing them to high concentrations of tumor destroying and growth inhibiting chemotherapy. The chemotherapy in this case is concentrated in the tumors where it can have a much greater effect than in the rest of the body. However, opinion is divided regarding whether chemoembolization is of greater benefit than bland embolization alone. Another form of embolization is radioembolization and this involves using beads coated with radioactive substances (Y90). Radioembolization is being utilized less frequently now that peptide receptor radionuclide therapy (PRRT) is being used regularly to treat patients, given the possible risk of radiation-induced liver injury.
The systemic treatment options for patients with NETs have greatly expanded over the last decade. These treatments vary in their ability to kill tumor cells (cytotoxic agents) versus their ability to freeze tumor cells (cytostatic agents). The use of a particular therapy for a specific patient is an individualized decision that depends heavily on circumstance.
The treatment options can be categorized based upon primary tumor origin. Pancreatic NETs tend to be the most chemotherapy sensitive of all NETs given that they possess some intrinsic defects in their ability to repair damaged DNA. One of the regimens that is used for bulky pancreatic NETs, even in the first line setting, is an oral chemotherapy regimen of capecitabine plus temozolomide (CAPTEM). This regimen has largely replaced older regimens using intravenous chemotherapy such as streptozocin, doxorubicin or dacarbazine. Another chemotherapy regimen that has demonstrated activity in patients with pancreatic NETs is fluorouracil plus oxaliplatin (FOLFOX). Typically, carboplatin or cisplatin-based chemotherapy regimens are no longer utilized for patients with well-differentiated NETs. These regimens are mostly used for patients with high grade neuroendocrine carcinomas. The CAPTEM regimen tends to be the most cytotoxic of all available therapies for patients with pancreatic NETs.
Another cytotoxic treatment option for patients with pancreatic NETs is peptide receptor radionuclide therapy or PRRT. PRRT involves targeting somatostatin receptors with a radionuclide particle which is bound to an analog of octreotide (described below). The type of PRRT that is currently FDA-approved for patients in the United States with pancreatic NETs with somatostatin receptor expression is called Lutetium Lu 177 Dotatate (LUTATHERA®). Lu 177 Dotatate is an intravenous treatment that is administered for up to 4 treatments, with each treatment separated by 2 months. The two main benefits of this therapy are that it can both shrink tumors and stop tumor growth for a prolonged period of time. This treatment is not available everywhere; however, it does tend to be available at larger neuroendocrine tumor centers. It is advisable to undergo the treatment at a center which has a lot of experience with this type of therapy. Though Lu 177 Dotatate is the currently approved type of PRRT, other types of PRRT are being tested in clinical trials (these include alpha therapeutics or the addition of radiation sensitizers). The best time to use Lu 177 Dotatate in patients with pancreatic neuroendocrine tumors is not yet defined.
With regards to cytostatic treatments, several drugs such as everolimus and sunitinib are approved for patients with pancreatic neuroendocrine tumors. Everolimus and sunitinib are pills which block energy-utilizing and blood-vessel promoting factors for neuroendocrine tumors, respectively. The somatostatin analogs lanreotide and octreotide are also treatment options for patients with pancreatic neuroendocrine tumors with somatostatin receptor expression on the tumor cells. These agents are administered once per month as a subcutaneous or intramuscular shot in the gluteus muscle and can slow tumor growth. A short-acting formulation of subcutaneous octreotide exists however this is typically used for patients with breakthrough symptoms from functioning tumors.
The role for chemotherapy in patients with non-pancreatic NETs is less clear. Chemotherapy regimens such as CAPTEM or FOLFOX may have some anti-tumor activity in patients with lung NETs or stomach NETs; however, they are not typically utilized for patients with small intestinal NETs. Sometimes, for patients with higher grade (grade 2, grade 3) small intestinal NETs, chemotherapy may be tried. PRRT is an approved treatment option for any patient with a gastrointestinal NET with positive somatostatin receptor expression. Many experts in the field tend to use this as a second-line therapy for patients with small intestinal neuroendocrine tumors which have progressed on somatostatin analog therapy however the optimal time to administer PRRT is still not yet known. Several ongoing studies (COMPETE, NETTER2) are seeking to answer this question. It should be noted that while PRRT with Lu 177 Dotatate is not yet FDA-approved for the treatment of patients with lung NETs, sometimes the treatment is able to be covered by insurance.
Everolimus is also approved for patients with small intestinal and lung NETs. This drug slows tumor growth but it does not typically cause much tumor shrinkage. Notably, no blood vessel blocking drugs are yet approved for patients with small intestinal or lung NETs. This may change in the near future with a drug called surufatinib (which is approved in China for both carcinoid and non-carcinoid tumors). The FDA has yet to make a formal decision on this drug.
Single-agent immunotherapy with checkpoint inhibitors (key regulators of the immune system that when stimulated can dampen the immune response to an immunologic stimulus) has not yet been found to be very successful in patients with low grade NETs. Combination immunotherapy with immune checkpoint inhibitors may have more activity in patients with higher grade NETs however the specific patient population who may derive the most benefit from immunotherapy is not yet known. Older types of immunotherapy such as interferon-alpha are no longer regularly used for treating patients with NETs due to significant side effects.
External beam radiation therapy in patients with neuroendocrine tumors is typically only useful for pain relief (particularly when tumors have spread to the skeletal system and are causing severe pain). Radiation treatment to the specific painful spot will usually provide relief. Stereotactic radiation therapy (fewer doses of high dose radiation therapy) is now also being explored for treating oligoprogressive (when one tumor is growing despite all other tumors being stable) tumors in other regions such as the liver.
Besides the various anti-tumor treatments reviewed above, there are many benefits resulting from a nutritious high protein diet, vitamin supplements – particularly niacin — and mineral supplements (such as potassium, magnesium, calcium, iron and even salt) when these are deficient due to diarrhea. It is valuable to meet with a nutritionist early after diagnosis for guidance about optimal dietary/supplementation strategies. In addition to the use of octreotide or lanreotide to control diarrhea, conventional anti-diarrheal medications such as Lomotil and Imodium may be helpful. Cyproheptadine (Periactin) may also help the diarrhea as well as flushing. Another drug which has been approved for unresponsive carcinoid syndrome diarrhea is called telotristat (Xermelo). This drug prevents the synthesis of serotonin and thus may also offer some benefits beyond just diarrhea control. All NET patients should be careful when drinking alcoholic beverages and avoid physical and emotional stress since these can precipitate carcinoid crisis attacks. Similarly, adrenaline-like drugs should be avoided unless absolutely necessary. These include various asthma inhalers, nasal decongestants and adrenaline itself.
There are a significant number of treatments (both currently available and in development) for NETs and carcinoid syndrome though choice of treatment and their applications can be quite complex. Even though this is an uncommon cancer, there are experts available who are willing to help and conducting research to move the field forward by introducing new imaging and therapy options. See the list of experts and other physicians diagnosing and treating patients with neuroendocrine tumors (carcinoid and non-carcinoid tumors).
As you can see there is good reason to be hopeful.
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General questions can be answered by calling the Foundation.
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