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.

 Watch all of CCF’s 2020-21 Video Series here: https://www.carcinoid.org/for-patients/videos/ccf-2020-video-series/.

Luncheon with the Experts Continues

 

CCF FB LIVE Julie Hallet, MD, MSc, FRCSC June17

Julie Hallet, MD, MSc, FRCSC, surgical oncologist at Sunnybrook Health Sciences Centre in Toronto, Canada, will be the featured guest for Luncheon with the Experts on Thursday, June 17 from 12 noon to 1 pm, Eastern Time.  Dr. Hallet is an Associate Scientist at the Odette Cancer Research Program, Sunnybrook Research Institute, and an Assistant Professor in the Department of Surgery at the University of Toronto. She is one of four core oncologists at the Susan Leslie Multidisciplinary Neuroendocrine Tumors Clinic. Her clinical expertise includes neuroendocrine tumors; hepatobiliary, pancreatic and upper gastrointestinal malignancies; and minimally invasive and image-guided therapies. READ MORE

Latest News

Lisa Yen of LACNETS Receives the 2020 Monica Warner Award

Lisa Yen, LACNETSCongratulations to Lisa Yen, NP, NBC-HWC, of LACNETS upon being selected as the 2020 Monica Warner Award recipient! The award, established by Novartis Oncology in 2009, is presented annually to “honor a patient, supporter, or caregiver who most embodies the passion, dedication, leadership, and spirit with which the late Monica Warner assisted patients, caregivers, and families affected by NETs.” READ MORE

Neuroendocrine Tumor Information in 10 LanguagesINCA NET Information in Many Lanuagues (002)

Did you know that the International Neuroendocrine Tumor Alliance (INCA), has free, NET info packets in 10 languages? Click here to select your language and download the factsheets: https://incalliance.org/net-info-packs/. The Carcinoid Cancer Foundation is proud to be a founding member of INCA.

NANETS Offers Free, Virtual NET Patient Education Programs in May and June

The North American Neuroendocrine Tumor Society, NANETS, is offering free, virtual NET Patient Programs in conjunction with their regional medical education conferences. Neuroendocrine tumor patients can participate in interactive programs with experts in the NET field. NANETS Virtual Regional Patient Programs are highly interactive, visually rich learning environments accessible from your computer, tablet, or mobile phone.  READ MORE and REGISTER

NANETS Patient Virtual Conferences

NET Specialist Updates

A warm welcome to Robert Ramirez, DO (pictured left) and Hagen Kennecke, MD (pictured right) on their new appointments in Tennessee and Oregon, respectively. READ MORE

Robert Ramirez and Hagen Kennecke collage

NJ Program Offering Free Rides to COVID-19 Vaccination Sites

Are you a resident of New Jersey who needs assistance getting to and from a vaccination site?  NJ Transit has a new public-private partnership offering New Jersey residents complimentary rides to and from vaccination sites.  The “VAXRIDE” program is funded through the generosity of sponsors led by Novartis and provides for approximately 11,000 NJ residents to receive up to two, free round trips to get vaccinated.  READ MORE

NANETS Issues Position Statement on COVID-19 Vaccination for NET and NEC Patients

A growing body of evidence suggests that patients with cancer have an increased risk of severe COVID-19 infection and related complications.  NANETS, the North American Neuroendocrine Tumor Society, has issued a Position Statement regarding the plan for COVID-19 vaccination for patients with neuroendocrine neoplasms (NENs), including well differentiated neuroendocrine tumors (NETs) and poorly differentiated neuroendocrine carcinomas (NECs). NEN survivors and patients with NENs on observation or undergoing cancer treatment should be offered COVID-19 vaccination as long as any components of the vaccine are not contraindicated. READ MORE

COVID 19 vaccine

Facebook Live Program on Carcinoid Syndrome: Managing Breakthrough Symptoms

Are you newly diagnosed with carcinoid syndrome or have been living with the syndrome for many years?

The Carcinoid Cancer Foundation presented a Facebook Live program on Carcinoid Syndrome on December 14th featuring neuroendocrine tumor (NET) expert Lowell Anthony, MD, FACP, Chief of the Division of Medical Oncology at the UK Markey Cancer Center in Lexington, Kentucky, and NET patient Melanie Bean. The live program offered viewers the opportunity to ask questions of Dr. Anthony and Ms. Bean and covered living with carcinoid syndrome and how to manage breakthrough symptoms.

If you were not able to join us for the live program, it is now available for viewing on CCF’s Facebook page here, https://www.facebook.com/271774129226/videos/2949405928614542.  For anyone who is not on Facebook, it is available for viewing on CCF’s YouTube channel here, https://youtu.be/xSLCXjYEb1s.

This special program is made possible with sponsorship by Sun Pharmaceuticals Industries Inc.

Carcinoid Syndrome Facebook Live program, Dr. Lowell Anthony and Melanie Bean, Dec 14, 2020

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

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.

6 Questions to Ask Your Doctor

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

Could You Have a Neuroendocrine Tumor Infographic

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 — Could You Have a Neuroendocrine Tumor— listing common symptoms and misdiagnoses.  Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.