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.

Luncheon with the Experts continues

Jaydira Del Rivero, MD, a Physician Scientist in the Developmental Therapeutics Branch of the National Cancer Institute, Center for Cancer Research, will be the featured guest for Facebook Live Luncheon with the Experts on Thursday, June 30, 2022 from 12 noon to 1 pm, Eastern Time.  Her research is focused on developing novel treatment approaches and targeted therapies for endocrine malignancies including advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma. READ MORE

Jaydira Del Rivero, MD_June 30, 2022

 

Latest News

Work and Cancer — Free, Virtual Conference, June 24, 2022

Join Cancer + Careers when they present the 12th Annual National Conference on Work and Cancer on Friday, June 24, 2022.  This free, virtual, day-long event is open to patients, caregivers, healthcare professionals, advocates, employers/HR and anyone else touched by cancer.  Click here to read more at the Cancer + Careers website and to register: https://www.cancerandcareers.org/en. 

To view the Agenda and speaker biographies, click here:  https://www.cancerandcareers.org/en/community/events/conference/2022-nat-conf-agenda

Work and Cancer National Conference, June 24, 2022

 

New Natural History Study of Neuroendocrine Tumors and Neuroendocrine Carcinoma Opens at the National Cancer Institute 

Jaydira Del Rivero, Principal Investigator of the NCI StudyYou can help physicians and scientists learn more about neuroendocrine cancer in order to develop future treatment options. A new clinical study, sponsored by the National Cancer Institute (NCI), has just opened and is looking to recruit and follow neuroendocrine neoplasm (NENs) and adrenocortical carcinoma (ACC) patients for a period of ten years in order to learn more about these uncommon cancers. Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC), with principal investigator Jaydira Del Rivero, MD, is a national and international study.  READ MORE

SNMMI Patient Education Day — Hybrid (In-Person and Virtual)

The Society of Nuclear Medicine and Molecular Imaging will offer a special Patient Education Day on Sunday, June 12 as part of its 2022 Annual Meeting. This free event offers patients and caregivers a unique opportunity to learn about the role of nuclear medicine in diagnosing and treating disease. There will be a Neuroendocrine Tumor breakout session from 1:30 -3:30 PDT.  Read more and register

World’s 1st Distinguished Professorship in Neuroendocrine Tumor Research at UK Markey Cancer Center

Very exciting news from the UK Markey Cancer Center!  The University of Kentucky Markey Cancer Foundation received a $1 million gift to create the world’s first distinguished professorship in neuroendocrine tumor (NET) research.

The Amanda W. Lockey Foundation has given the gift in support of UK Markey Cancer Center medical oncologist Lowell Anthony, MD, a specialist in NET treatment. The distinguished professorship in neuroendocrine tumor research will support Dr. Anthony’s work by allowing him and his team to focus on clinical and translational research and the development of a radiotherapeutic program. READ MORE

UK Markey Distinguished Professorship in Neuroendocrine Tumor Research

News for US Veterans with Lung NETs

For US veterans with typical and atypical lung neuroendocrine tumors – the VA has added several conditions to the list of presumptive illnesses related to military service, including lung carcinoid. With appreciation to all our veterans for your service.  https://www.fedweek.com/armed-forces-news/va-adds-to-list-of-presumptive-diseases/

New NET Research Collaboration

Steven Libutti, MD_2Exciting news about a new research collaboration to discover and develop novel therapies targeting immune checkpoint proteins for the treatment of neuroendocrine tumors and other cancers.  The collaboration was announced by NexImmune Inc., a clinical-stage biotechnology company, working with Rutgers University. NET expert Dr. Steven K. Libutti (pictured), Director of Rutgers Cancer Institute of New Jersey, Vice Chancellor of Cancer Programs, Rutgers Biomedical and Health Sciences, and Senior Vice President of Oncology Services, RWJBarnabas Health, will be the principal investigator. Read more: https://www.biospace.com/article/releases/neximmune-announces-research-collaboration-with-rutgers-the-state-university-of-new-jersey-related-to-neuroendocrine-tumor-targets/?s=65 

If I’d Listened To My Doctor, I Would Be Dead Right Now

Taryn knew she needed a biopsy right away.  Being an advocate for oneself is often the deciding factor in getting a proper neuroendocrine  diagnosis.  READ MORE

Taryn Hillin

 

When You Are Not Expecting a Neuroendocrine Cancer Diagnosis

“Dear self that walked into the ER with abdominal pains not expecting the outcome to be cancer.” Sheena never imagined her diagnosis would be #NeuroendocrineCancer. https://elephantsandtea.com/…/what-to-expect-when…/..

What To Expect When You’re Not Expecting Cancer, Sheena Harris-Williams

 

New Guide on High-Grade Neuroendocrine Cancers

Have you or a loved one been diagnosed with high-grade neuroendocrine cancer?  There’s a new guide for patients and caregivers, just released by the Healing NET Foundation in observance of NET Cancer Awareness Day, November 10, 2021.  Healing NET worked with medical experts, patients, and caregivers to create High-Grade Neuroendocrine Cancers: A Guide for Patients and Caregivers. The publication specifically addresses ways to meet the challenge of a high-grade neuroendocrine cancer diagnosis. READ MORE

High Grade Neuroendocrine Cancers Guide, Healing NET Foundation 2021_cover and interior_2

 

Second Generation Immunohistochemical Markers: Reflections from Clinical Implementation

This new article from pathologist Carl Christofer Juhlin, MD, PhD, of Karolinska Institutet in Sweden identifies second-generation neuroendocrine immunohistochemical markers.  These markers can help identify the site of primary neuroendocrine tumors as well as helping to ensure a proper diagnosis for NETs and poorly differentiated neuroendocrine carcinoma. Read more in this open access article here, mdpi.com/1259126.

Second-Generation Neuroendocrine Markers

Unique Opportunity for Neuroendocrine Tumor Patients

For many neuroendocrine cancer patients, access to physicians who specialize in this disease is challenging or simply not possible. The National Cancer Institute, NCI, is offering neuroendocrine tumor (NET) patients a unique opportunity to have a multidisciplinary tumor board review of their medical records and make recommendations about NET treatment options.  READ MORE

Neuroendocrine Tumor Information in 10 Languages

INCA NET Information in Many Lanuagues (002)

 

Did you know that the International Neuroendocrine Cancer 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.

 

 

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.