How to Stay Positive with Cancer

Beth asked the doctor to remove her appendix while having surgery on her gallbladder. She had a feeling something bigger was going on . . .she was right.

This  series has been made possible by the generous support of Lexicon Pharmaceuticals as part of the Fit-to-Fight series. Watch the complete series here, https://www.carcinoid.org/for-patients/videos/ccf-50th-anniversary-videos/.

The Latest News

INCA Launches First-Ever Global Survey to Measure Access Challenges to Optimal NET Care

What are the challenges of optimal care for #NeuroendocrineTumor (NET) patients? We need your feedback! The International Neuroendocrine Cancer Alliance (INCA), of which CCF is a proud member, has launched SCAN – a global survey designed to capture both NET patients’ and healthcare professionals’ perspectives. Read more and take the survey, available through October 31, Thank you!! http://bit.ly/SCANSurvey

INCA SCAN survey 2019_2

FACEBOOK LIVE on September 23 Featuring Dr. Thomas Hope

Join us on Monday, September 23rd at 2 pm EDT for a special Facebook Live Event! We’ll hear from NET expert Dr. Thomas Hope for an in-depth discussion about Imaging of Neuroendocrine Tumors. We hope to see you there! If you have any non-case specific questions, send them our way or comment on our Facebook announcement about the event and Dr. Hope will try to answer them LIVE! https://www.facebook.com/Carcinoid/

Facebook Live with Dr. Thomas Hope, Sept 23, 2019

Stop&Shop Community Bag Program Supports CCF and the Environment

Stop and Shop Community Bag Program_2

Read more about how you can participate.

 

New York City Luncheon with the Experts on NET Cancer Day 2019

Join neuroendocrine tumor (NET) patients in New York City on Sunday, November 10, 2019 — NET Cancer Day — for a unique opportunity to have lunch with two medical experts. Share your experiences with others who have similar concerns and hear from physicians on issues ranging from NET cancer treatments and surgery to follow-up testing and new developments. Read more and reserve your spot today.

Luncheon with the Experts, Drs. Edward Wolin and Celia Divino, March 2019

Edward M. Wolin, MD and Celia M. Divino, MD will be the guest physicians for Luncheon with the Experts on November 10th in New York City.

 

CCF Launches New Website for  PRRT and Gallium-68 PET/CT Scan

CCF is excited to announce that we have launched a new website dedicated to providing information about PRRT and the Gallium-68 PET/CT scan. This site also includes an interactive map to locate facilities where PRRT and/or the Gallium-68 PET/CT scan are being offered. The map will be updated regularly as additional facilities provide these services. Visit CCF’s new website at https://www.prrtgalliumcenters.org/.

PRRT Gallium Centers Website

 

 

Promising Developments in the Pipeline for High Grade Neuroendocrine Tumor Diagnosis and Treatment

“Treatment for high grade neuroendocrine neoplasms (abnormal tissue growth) is moving the way that the treatment for triple negative breast cancer is moving — toward the realization that there are a basket of subtypes and that each can be potentially treated differently,” according to Aman Chauhan, MD, medical oncologist, Director of NET Theranostics, Markey Cancer Center (NCI Designated Cancer Center), University of Kentucky. Insights gained through clinical trials will change how these cancers are diagnosed and treated.  Read more

Help Support CCF!

During our first 50 years, the Carcinoid Cancer Foundation has helped tens of thousands of people diagnosed with neuroendocrine cancer, loved ones, and those seeking a diagnosis. Have we helped you? Here’s a way to give back.Together we can help CCF achieve its mission of education, awareness, support and advocacy. Please donate today! https://carcinoid.kindful.com/

New NCCN Patient Guidelines, Neuroendocrine Tumors

The Carcinoid Cancer Foundation is pleased to share the newly published NCCN (National Comprehensive Cancer Network) Guidelines for Patients® Neuroendocrine Tumors and to have endorsed these guidelines, which focus on tests and treatment options recommended by experts in cancer.  The 100-page publication is accessible in several ways. Read more

Peptide Receptor Radionuclide Therapy, PRRT: Information and Locations

Since we shared the news of the FDA’s January 26, 2018 approval of peptide receptor radionuclide therapy, PRRT, with Lutathera  (lutetium Lu 177 dotatate), more information has become available for the neuroendocrine tumor community, including updates about coverage and reimbursement; information about patient assistance programs being offered by Advanced Accelerator Applications (AAA), the manufacturer of Lutathera; new patient materials from  Advanced Accelerator Applications; and locations where the treatment is currently being offered. Read more

PRRT Infographic_2

 

Patient & Caregiver Education on Carcinoid Syndrome: Talking to Your Doctor About Symptoms, Diet, and Treatment

Join us for a new educational program designed for people living with Carcinoid Syndrome and their loved ones. This program provides information about:

  • how a diagnosis is reached
  • what to eat when living with Carcinoid Syndrome
  • how to  manage it over time

Check out this free program at your convenience: https://www.carcinoid.org/treatment-education/

Below is a short clip from the program featuring NET expert David Metz, MD talking about the signs and symptoms of carcinoid syndrome.

 

Cancer Coach Live, Carcinoid Syndrome program, on-demand

Gallium 68 PET/CT Scanning for Neuroendocrine Tumors — Information and Locations

The US Food and Drug Administration’s June 1, 2016 approval of the Gallium-68 PET/CT DOTATATE scan using NETSPOT® heralded a new age of nuclear imaging in the United States for neuroendocrine tumors. Click here for more information about the scan and locations of where it is being offered throughout the US.  We will be adding to the list based on feedback from the NET community.

CCF Infographic: 6 Questions to Ask Your Doctor

Have you or someone you love been diagnosed with a neuroendocrine tumor or carcinoid cancer?  It can feel like a daunting task to figure out next steps and doctor appointments may be overwhelming.   You can help yourself or support a loved-one by learning about the disease and preparing yourself for doctor visits.  The first visit may be the most challenging, so It’s important to arm yourself with relevant questions.  Here we provide you with six questions, specific to neuroendocrine tumors, to ask your doctor.   Click here to download the infographic.

Carcinoid Syndrome Website

The Carcinoid Cancer Foundation’s website www.carcinoidsyndrome.org  is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. This site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome.

Guide to Understanding Carcinoid Syndrome

Know the signs and symptoms — skin flushing, diarrhea, heart racing . . . it could be carcinoid syndrome!  How is it diagnosed, what are the treatment options, what questions should you ask your healthcare provider?  Read more in Guide to Understanding Carcinoid Syndrome,  from Health Monitor and the Carcinoid Cancer Foundation: https://www.carcinoid.org/wp-content/uploads/2015/10/Carcinoid-Syndrome-Guide-to-Understanding.pdf.

Reaching Those Who Are Still Undiagnosed

To combat statistics showing that it often takes 5 to 7 years for patients to receive the correct diagnosis of a neuroendocrine tumor (NET), the Carcinoid Cancer Foundation has partnered with Advanced Accelerator Applications to create an infographic listing common symptoms and misdiagnoses.  Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.