Many of you might be wondering what NET means? NET stands for Neuroendocrine tumors. With the rarity of this type of Cancer awareness is more important than ever. This is why it is so important that this day exists. So many lives could be saved with the right diagnosis and treatment options.
If you have seen anything related to NET, you probably have seen the zebra stripe. The zebra striped ribbon is the official carcinoid/NET ribbon “color”. You might be wondering why is the the mascot? In medical school, doctors are taught “when hearing hoofbeats, think horses, not zebras.” Carcinoid Cancer & Neuroendocrine Tumors has been thought of as ‘rare’and therefore may be considered a zebra. The zebra is just a horse of a different color…
If you have been diagnosed with NET a facebook group called Loveable Lungnoids has been created for survivors and their friends/family. This is a wonderful resource for support and information. Having support is an important part of the healing process.
Currently 33 states so far have officially recognized NET Cancer Day. If your state has not yet recognized it officially you can make this happen by contacting your local Governor’s office and making them aware of NET Cancer Day. If you get denied, get other people involved by having them contact their office as well. Also you might want to contact your local representative of the House and Senate. It is so very important that every state is on board and let’s their citizens know about NET Cancer Day and NET Cancers.
All it takes is one person. My sister contacted Governor Rick Snyder in Michigan for two weeks until his office officially proclaimed it. I am so very proud of her for her strength, determination and care. She did it for our Mother and everyone else who has NET and those who go undiagnosed.
To find out the contact information for your local elected officials please visit:
“Neuroendocrine tumors (NETs) is the umbrella term for a group of unusual, often slow growing cancers, which develop from cells in the diffuse endocrine systems.They are found most commonly in the lung or gastrointestinal system, but they can arise in other parts of the body, such as the pancreas, ovary and testes, among other sites.” — Worldwide NET Cancer Awareness Day Executive Committee and Membership Council
If you have never heard of Neuroendocrine or know that there was a Cancer associated with it, you are not alone. On average patients are treated 3-7 years for the wrong disease. Most NET patients are diagnosed when the cancer has already spread. Early diagnosis dramatically improves outcomes. Physicians are often not aware of current diagnostic & treatment options. Others treat net tumors like a typical Cancer with radiation and chemotherapy, when it isn’t effective in treating the tumor. Early on with my Mom’s diagnosis of her lung carcinoid tumor, chemo and radiation was offered as a solution when later it was found out that for my Mom’s type of carcinoid cancer that wouldn’t have helped.
Now you have to be wondering how you have never heard of this form for Cancer and the reason is how rate this type of Cancer is. Here is a little information on the rarity of NET tumors:Another term used for Neuroendocrine Tumors is Carcinoid, which is a term that is even less recognizable.
This group of cancers was first identified as a specific disease in the mid 1800s, and the term carcinoid was given to them in 1907 to describe a tumor that grew much more slowly than normal cancers. However, by the 1950s, it became quite clear that these slow-growing tumors could be malignant and spread from one part of the body to another like other forms of cancer.
- Less than 1% of all cancer is carcinoid.
- Less than 2% of lung cancer is carcinoid.
- Less than 5% of carcinoid is bronchial/lung…the rarest of the rare. Yet 12,000 people each year are diagnosed with carcinoid cancer, and numbers are rising (including lung carcinoid).
- Diagnosis of Carcinoid cancer is increasing by 5% each year.
Current studies suggest that Carcinoid and Neuroendocrine tumors are not as rare once thought. Over 11,000 new patients are diagnosed each year and as many as 125,000 patients are living in the US today- AND the number of diagnoses is increasing by more than 5% annually.
As with any Cancer diagnosis is crucial but with the rarity of the disease diagnosis can be a time enduring and frustrating process. Often times patients go in with symptoms and get diagnosed with something else. Irritable Bowel Syndrome (IBS) and Crohns disease are two most common misdiagnosed conditions for patients with carcinoid.
Many physicians still believe that carcinoid tumors are benign, slow growing and do not metastasize. NET cancers can have a number of different effects on the body. Some NETs produce abnormally large amounts of hormones and some have a related syndrome, such as carcinoid syndrome, which means that the hormones that are secreted cause noticeable symptoms like flushing, diarrhea, cramps, asthma-like wheezing, heart problems and skin changes.
There are two types of Carcinoid tumors. Typical and atypical carcinoid tumors look different under the microscope.
- Typical carcinoids tend to grow slowly and only rarely spread beyond the lungs. About 9 out of 10 lung carcinoids are typical carcinoids.
- Atypical carcinoids grow a little faster and are somewhat more likely to spread to other organs. Seen under a microscope, they have more cells in the process of dividing and look more like a fast-growing tumor. They are much less common than typical carcinoids.
The diagnosis of typical and atypical can also change the outlook on a patient’s recovery, as with atypical they tend to grow faster.
Unfortunately, many patients are diagnosed later on, when the cancer has spread to other parts of the body. Even when the tumors have spread, the disease and its symptoms can often be controlled for many years. When caught at an early stage, NET cancers can often be cured with surgery. As with all cancers, if a surgical cure is possible, this should be the first line of treatment. Patients must still be followed for at least ten years to ensure there is no recurrence of the cancer.
Being that NET cancer’s are so rare makes awareness of this type of Cancer so crucial. Diagnosis is the key to survival. It took my Mom three months to properly get diagnosed with a correct treatment plan. So many with NET tumors are not as fortunate. They go years with misdiagnosed symptoms. If it wasn’t for the diligence and research of my sister I know that my Mom wouldn’t have been as fortunate.
Through my sisters research she heard about an amazing doctor by the name of Eric H. Liu, M.D., director, Neuroendocrine Center; director of surgical services at Vanderbilt University Medical center in Nashville, TN. Doctor Liu is one out of only a few true specialists in carcinoid tumors. He was the first doctor that treated my Mom with dignity and care. My Mom wasn’t just a patient to him, he truly cared and wanted to see her recover. After months of fear, confusion and unknown she finally had a treatment plan in place.
The NEUROENDOCRINE CENTER at Vanderbilt employs many different diagnostic tools and tests to uncover and confirm NETs. Their website states that they range from blood and urine tests, to scans and endoscopy. The blood tests most often used are called “markers”. This test helps determine the number of tumors are present. Based on the type of tumor present,a variety tests are available such as urine tests, CT cans, MRI’s, endoscopy and ultrasound technology.
One gold standard for scanning and locating NET tumors is the Octreoscan. Which is a type of scintigraphy used to find carcinoid and other types of tumors and to localize sarcoidosis. Octreotide, a drug similar to somatostatin, is radiolabeled with indium-111, and is injected into a vein and travels through the bloodstream. The radioactive octreotide attaches to tumor cells that have receptors for somatostatin. A radiation-measuring device detects the radioactive octreotide, and makes pictures showing where the tumor cells are in the body.
“The treatment of a NET cancer depends on the size and location of the tumor, whether the cancer has spread, and the patient’s overall health. These are a complex group of cancers to manage, and, ideally, a multidisciplinary team of specialists will work with the patient to determine the best treatment plan. Not all of the treatments described here are suitable for all patients, and treatment plans should always be tailored to the individual.” –NET Cancer Day Website
Like I said previously it took my Mom over three months to find a Doctor that would remove her tumor. Being that the Cancer is so rare many Doctors they base treatment similarly to other Cancer’s because don’t have all the information and aren’t aware of other options. For many surgery is the first line of defense. In my Mom’s case her tumor was blocking over 75% of her airway, causing her to have recurrent bronchitis and pneumonia. The Doctor’s at Vanderbilt had determined she probably had pneumonia in her lungs for years. If my Mom hadn’t started to cough up blood starting in April, I have to wonder how long it would have taken for her to be diagnosed?
I am not a doctor but it was obvious to me that surgery was her only option for any normalcy in life. She was sick with bronchitis more often than she wasn’t. Every time she would get sick, it would knock the life out of her and it would take weeks if not a month to get back to health… As the time went by, the length and severity of the bronchitis and pneumonia would increase. It was also common for my Mom to have to return back to her primary physician for different antibiotic. I saw her month after month and how miserable she would get when she was sick.
The CDC states that in 2009, 1.1 million people in the United States were hospitalized with pneumonia and more than 50,000 people died from the disease. With these statistics and the risk of the tumor growing larger blocking more of my Mom’s airway, I knew that we had to find a more aggressive Doctor that would remove her tumor. Even the oncologist at the University of Michigan Hospital recommended we find an aggressive doctor when their thoracic surgery department wouldn’t operate. They determined that it would be too risky being that they weren’t confident that they could remove all the Cancer. During a bronchoscopy at the UM Hospital it was also determined the Cancer had spread to a lymph node near the tumor, which was later found not to be the case once the tumor and all the lymph nodes were removed at the Vanderbilt University Medical Center in August 2012.
Finally after three months we found a Doctor willing to remove her NET tumor and an amazing compassionate oncologist who is one of the leading Doctors and researchers in the field of NET Cancer.
Dr. Liu was recruited to Vanderbilt in 2009 to develop the Neuroendocrine Center. Prior to opening the center, he studied with renowned neuroendocrine surgeon Kjell Oberg, M.D., Ph.D., in Sweden, who was perfecting the use of radioactive imaging tracers that offered patients exciting new treatment options. Under Liu’s direction, the Vanderbilt center consists of a coalition of scientists and clinicians working together to provide patients with the most innovative and comprehensive diagnostic tools, as well as treatment therapies that provide the best possible patient outcomes. He is dedicated to helping find more suitable treatment options for NET cancers.
World renowned endocrine tumor expert Kjell Oberg and Vanderbilt are working together to bring to the U.S. the very latest advances in the treatment of neuroendocrine cancer. In October, Oberg, M.D., Ph.D., was appointed adjunct professor of Surgery, working directly with Eric H. Liu, M.D., director of the Vanderbilt Neuroendocrine Center.
“His incredible insights and collaboration will surely position Vanderbilt as a U.S. leader in the treatment of this disease,” Liu said.
Prior to opening the center, Liu studied with Oberg in Sweden, where he chairs the Centre of Excellence for Endocrine Tumors at Uppsala Hospital.
“Kjell’s resume is truly a modern history of neuroendocrine cancer,” said Liu, assistant professor of Surgery in the division of Surgical Oncology & Endocrine Surgery. “His affiliation with Vanderbilt will bring decades of experience and a view of cutting-edge treatments for neuroendocrine cancer,” he said.
Another leading expert in NET Cancer is Dr. Dan Granberg, who is the senior consultant at the Department of Endocrine Oncology, Uppsala University Hospital in Sweden. He is a specialist in endocrinology and internal medicine with more than 20 years’ experience in endocrine oncology. He treats many patients harbouring neuroendocrine tumours – patients referred from all over the world, including European and Asian countries, the United States, Canada and Australia.
Dr. Granberg is specially interested in neuroendocrine lung tumours and targeted irradiation therapy. He wrote his doctoral thesis on bronchial carcinoids. He has published more than 30 articles and is the author of a number of book chapters on bronchial carcinoids and neuroendocrine tumours. He is currently involved in several research projects in the field of neuroendocrine tumours.
Uppsala which has the only lung carcinoid center in the world is where Professor Magnus Essand at Uppsala University has during six years developed and tested a potentially new treatment against neuroendocrine tumours. The treatment consists of an oncolytic virus, which has turned out to be remarkably efficient in destroying neuroendocrine tumours in mice. With enough funding he will be able to start the world’s first human trials with a genetically engineered virus specifically designed to target neuroendocrine tumours.To make a donation for this very important human trial please visit: http://www.uu.se/en/support/oncolytic
There is so much we don’t know about NET Cancer making it important to have Doctors like Dr. Liu and Dr. Kjell who are passionate and dedicated to finding a cure. The more awareness that grows the more people that can be saved. With all of research and time comes lots of costs, it is also important to get awareness from a donation standpoint. Being that this Cancer is so rare, it doesn’t get the air time like Breast Cancer or some of the more well known Cancers.
Did you know that one of the most famous people in the world died from a NET Cancer? Yes that is right, Steve Jobs the co-founder of Apple had a type of NET Cancer. Also Dave Thomas, the founder of Wendy’s, died of Carcinoid cancer. Carcinoid cancer took over his liver – he did not die of liver cancer as most media reports. It was Carcinoid cancer. Both Walter Payton and Audrey Hepburn also died from a form of NET.http://www.carcinoid.org/content/donations You can also sign the official proclamation: http://netcancerday.org/support-us/sign-the-proclamation
All the information in this blog entry I found on the below websites. To find this information and so much more visit these websites:
- Dr. Liu
- Dr. Granberg’s bio
- Dr. Granberg’s contact info
- To find Lungnoid Doctors and Hospitals Worldwide visit
- Loveable Lungnoids Facebook Group