1. What is the Carcinoid Cancer Foundation?

The Carcinoid Cancer Foundation (CCF), created in 1968, is the oldest neuroendocrine cancer foundation in the United States, and to the best of our knowledge, in the entire world. The Foundation’s mission is threefold: to increase awareness and education among the general public and healthcare professionals regarding neuroendocrine tumors (NETs), to support NET cancer patients and their loved ones, and to serve as patient advocates.

CCF strongly believes its mission will only be achieved when everyone worldwide is aware of neuroendocrine cancer. There are at least 175,000 people living with NETs in the United States, however there could be many more because of the number of people who are misdiagnosed or who remain undiagnosed. The Foundation strives to inform people about these diseases, which often have symptoms associated with more common illnesses. Outcomes can be improved when people understand what their symptoms might be and how they can find an expert to treat them.

  1. What do NETs and neuroendocrine cancer do to the body and what are the symptoms patients typically face? What is the long-term outlook?

NETs can occur anywhere in the body, but the most common primary sites are in the gastroenteropancreatic area and the lung. Metastasis may follow when the disease is in the gastrointestinal area and it breaks through the wall of an organ, then spreads to the lymph nodes and, more distantly, the liver. When this happens, people have NETs in the liver, rather than liver cancer.

How the disease affects people depends on where it is located, whether it has metastasized, if it is the slow-growing form of the disease or the more aggressive kind, and if a syndrome is associated with it. Carcinoid syndrome occurs when functioning tumors are present and producing an excess of a hormone throughout the body. Those who have carcinoid syndrome have an excess of serotonin systemically that is being produced by the tumors. Some of the symptoms of this condition may include: diarrhea, flushing, asthma-like wheezing and heart palpitations. Not everybody who has a neuroendocrine tumor has carcinoid syndrome. People diagnosed with neuroendocrine tumors may experience other symptoms, such as: abdominal pain, bloating, skin rashes, weight changes and fatigue.

The long-term outlook for the majority of patients can be very positive, as most have what are called typical NETs, the slow-growing type that can take years to grow before symptoms appear. Many are initially misdiagnosed, and, by the time they are properly diagnosed, the disease has metastasized and cannot be cured. However, most people with typical NETs can live for decades with metastatic disease, as long as they are properly diagnosed and treated. On the other end of the spectrum are atypical NETs, which are much more aggressive and are treated differently.

Another hopeful note is the development of many new imaging and treatment options over the last few years, as well as the great amount of research occurring around NETs. The future looks very promising—there will soon be even more therapies people can utilize to manage the disease. 

  1. What are some of the biggest challenges patients face who have NETs and neuroendocrine cancer?

Getting a proper diagnosis is often a huge obstacle for patients. People who have mid-gut tumors may be told they have irritable bowel syndrome or Crohn’s disease. Those with lung NETs are frequently misdiagnosed as having asthma. Males experiencing the flushing associated with carcinoid syndrome are often misdiagnosed as having rosacea, while women are advised they are in menopause regardless of their age. Sadly, some people are even told they need psychological help despite their symptoms.

Finding a physician who fully understands the disease can be difficult. Because neuroendocrine cancer is uncommon, there are a limited number of specialists around the country. Patients frequently have to travel a great distance to consult an expert.

Until patients are properly diagnosed, symptoms may not be controlled, which greatly affects their lifestyle and causes emotional distress because they may not be able to do everyday things most people take for granted. Even when they are undergoing treatment, there are still many emotional challenges. Since patients with neuroendocrine cancer do not typically have the type of chemotherapy that causes hair loss, others may not understand that these people can be very ill. Personality changes can also occur, creating difficulties for loved ones.

There may also be physical challenges, depending on where the tumor is located. If it is pressing on an organ or has metastasized to the bones, it can cause pain. Fatigue is also very common, which can be hard not only on the individual, but also on those around them, whether at work or home.

Many patients also face financial problems depending on whether or not they have insurance and what type of insurance they have. Treatments can be very expensive, so those who have to contribute a lot may face a financial burden.

  1. What resources does CCF offer patients?

The foundation is a digital organization, embracing the many benefits technology provides. One of the most important resources CCF has created is a weekly program, Facebook Live Luncheon with the Experts. Every week a NET cancer specialist is a featured guest, presenting the newest information in their area of expertise while also fielding questions from the worldwide live audience. While physicians are common guests, other NET experts also participate, such as palliative care professionals and nutritionists.

CCF also provides a high level of personal support to help patients on their treatment journey, especially for those who are newly diagnosed. Patients can call, write or email the organization from anywhere in the world with questions. In addition to talking with patients and their loved ones, knowledgeable staff can connect them with physicians and other resources such as support groups and programs for NET patients and caregivers. The Foundation also acts as a strong advocate for the NET community, testifying before the FDA on new treatments and speaking out on behalf of patients and their loved ones on issues of concern.

CCF’s website also offers a wealth of resources to help patients and their families. Comprehensive information is provided about the disease, including the very latest updates on new treatments and diagnostic advances, as well as a list of physicians across the country who treat neuroendocrine cancer. A directory is available listing various support groups, along with information on upcoming events and programs in the neuroendocrine community. Survivor stories can also be found on the website, creating a sense of kinship while giving patients a chance to see someone else living with the disease. The website also serves as a library for a vast number of educational videos, enabling patients to utilize these helpful resources at their convenience.

Additionally, CCF has partnered with Self Care Catalyst to create their own app, NET Cancer Health Storylines, that enables patients to easily track symptoms, record medications, and other information that helps them have better conversations with their physicians.

  1. What outreach activities does CCF use to connect with patients and families?

 CCF has a presence on all major social media channels, including: Facebook, YouTube, Twitter, Instagram, and LinkedIn.

The organization has a list of NET support groups around the country on its website that helps to connect patients and caregivers. For many, this is their first opportunity to participate in a group, and it can be life changing for them to connect with others facing similar challenges.

The Foundation also partners with many different groups, extending outreach activities. For instance, CCF has collaborated with Smart Patients to build an online discussion group for carcinoid cancer and NET patients, as well as their families and friends.

  1. How can people support CCF?

Donations are especially valuable to the organization. The Foundation’s website, educational and advocacy activities are all made possible by contributions. These crucial activities help advance early detection and treatment, which are essential for enhancing quality of life for everyone living with NETs

Many people support the organization through Facebook birthday fundraisers, as well as other events held in memory of someone special in their lives. Additionally, people who purchase online through AmazonSmile can select the Carcinoid Cancer Foundation as the charity of choice to receive a donation based on their purchases.

  1. Where can patients get the most current information on new advances in NETs and neuroendocrine cancer?

CCF is an excellent place to find the most current information. New advances in imaging and treatments are posted as soon as possible on the website and Facebook. Patients can also sign up to receive e-newsletters and blogs and get notifications of new posts by email. They can also subscribe to the Foundation’s YouTube channel which notifies them when a new video is displayed.

Because the organization has strong relationships with many of the people, companies and institutions involved in treatments and clinical trials, the Foundation is always on top of new developments and is eager to share this information across the neuroendocrine community.

  1. What closing thoughts should readers remember?

Getting a cancer diagnosis is very scary, but being diagnosed with a rare cancer is even more difficult. Most people have never heard of carcinoid or neuroendocrine cancer, and the newly diagnosed are often overwhelmed. CCF wants people to understand they can turn to us for the knowledge and support they need to succeed on their treatment journey. Knowledge is power, and the Foundation is dedicated to providing the information patients need to get started on the right path for living well with this disease.

Patients have reason to be very hopeful. Many clinical trials are underway, new imaging technologies have been developed, and promising new treatments have been approved by the FDA. These exciting advancements provide a reason to be hopeful about both the quality and length of life.

With that being said, more awareness and education are needed across the medical community about these conditions and their symptoms, as misdiagnosis is common and a great threat to optimal outcomes for patients.