|
CARCINOID CANCERA rare form of "slow-growing" neuroendocrine cancerSusan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness |
|
|
May
22, 2013
Good news! I am announcing the
release of my memoir My story is one many of you can identify with – an uplifting look at a life that I am determined to live well, despite all the obstacles I have been dealt. At the heart of the story is the idea of LIVING with cancer. It took eight years to correctly diagnose my rare disease, Carcinoid/ Neuroendocrine Tumors. Then, they said I would die in just a few more years. That was eighteen years ago, and here I am! How have I faired? Very well. Read the book to find out how I have lived a happy life, even with cancer. Would you help to spread the positive word by telling your friends, by gifting the book, and by posting a review for other readers on the www.amazon.com/Becoming-Sunny-Susan page? We know how valuable a positive recommendation can be.
What a long and interesting journey it has been. I’ve come from my rural upbringing, where success meant winning blue ribbons for my cow at the state fair to the far-flung travels and wide-reaching influence I have achieved as a cancer advocate. My story is one many of you can identify with – an uplifting look at a life that I am determined to live well, despite all the obstacles I have been dealt. At the heart of the story is the idea of LIVING with cancer. It took eight years to correctly diagnose my rare disease, Carcinoid/ Neuroendocrine Tumors. Then, they said I would die in just a few more years. That was eighteen years ago, and here I am! How have I fared? Very well. Read the book to find out how I have lived a happy life, even with cancer. Recently, I was awarded the 2012 Monica Warner Patient Advocacy Award for my work. Dr. Richard R. P. Warner, a national leader in carcinoid cancer research, wrote the forward of Becoming Sunny Susan. He said, “Hers is a survival story that makes good reading for the healthcare provider and for the newly diagnosed carcinoid patient and also for the advanced disease sufferer who may have been told “there is no effective treatment…” Why is my book titled Becoming Sunny Susan? I describe a way of living that is upbeat and deeply rewarding. Yes, I am living with cancer, and I am also living with music, books, good friends, beloved family, adventure travels, and of course my advocacy work. I’ve helped other through my carcinoid information website, the first of its kind, and contributed through participation on the medical frontier of cancer research. Rooted in the values I learned as a child, this is a life that makes a difference. Among you, my friends, are many avid readers. So many of us dream of writing a book, and now that I have done it, I want to share it with many readers. Would you help to spread the positive word by telling your friends, by gifting the book, and by posting a review for other readers on the www.amazon.com page? We know how valuable a positive recommendation can be. Thank you for your interest! Sunny Susan Anderson * * * * * * * * * * A must see/read by Bill Claxton of Singapore http://cnets.org/attachments/netcancer_monograph_wmc_rev5.pdf * *
* * * * * * * * What is the most common kind of neuroendocrine tumor (NET)? How do these tumors grow? What is carcinoid syndrome? What are the quality of life issues for patients? In “The ABC’s of Carcinoid/NETs,” three of the world’s leading carcinoid and NET cancer specialists – Dr. Richard R.P. Warner, Dr. Edward M. Wolin, and Dr. Eugene A. Woltering – talk about the advice they offer their patients, the advances they have seen during their careers, and what they anticipate will be available for NET patients in the future. http://www.youtube.com/watch?v=9U6q78a1xaQ If you or a loved one were newly diagnosed with carcinoid cancer or another neuroendocrine tumor, such as a pancreatic neuroendocrine tumor (pNET), what would you want to know about these rare diseases? What information would you like to share with your local doctor? Learn more in the first video of a new series presented by the Carcinoid Cancer Foundation. In recognition of the 3rd Annual Worldwide NET Cancer Awareness Day
on November 10, the Carcinoid Cancer Foundation released the second video,
"Faces of Hope," in its 2012 series. Meet NET cancer survivors Claire, Josh, Judy, Kathy,
Kenneth, and "Sunny" Susan as they share their journeys about being
diagnosed and living with rare neuroendocrine tumors, including lung carcinoid,
carcinoid of the ileum, and pancreatic neuroendocrine tumors. Future videos in
the series will focus on surgery and treatment options, lung carcinoid, and
nutrition. (Click on the YouTube logo below to see the video in a larger
format.) 3rd Video is about LUNG Carcinoid/NETs. http://youtu.be/_nOtls5R_Yc * * * * * * * * * * Additional video that are not part of this series but are
available on YouTube. Surgery and Treatment Options for NET CancersWhat are the surgical and treatment options for carcinoid and neuroendocrine tumor patients? For patients with tumors that have spread to the liver which therapies should be used to improve quality and quantity of life? How do patients benefit from clinical trials? There is an explosion of technologies coming not only in the diagnostics but also in the treatments of these rare cancers. View the latest video from the Carcinoid Cancer Foundation: http://bit.ly/VcJXgz http://www.youtube.com/watch?v=ZQhysl6g_6E "Surgery for Neuroendocrine Tumors: What Every Patient Should Know" -- Carcinoid/NET specialist Dr. Rodney Pommier, Professor of Surgery, Division of Surgical Oncology, Oregon Health & Science University, is featured in this video, made possible through a collaborative effort of the New Jersey Carcinoid Cancer Network and the Carcinoid Cancer Foundation. http://www.youtube.com/watch?v=wsahfdsJwFA * * * * * * * * * * * * * * * * * * * * * * * *
This
web site was be 16 years old on April 27, 2013, and * * * * * * * * * * * * Neuroendocrine Tumor ProgramOchsner, Kenner, LA "The DREAM TEAM" click here: http://www.ochsner.org/programs/neuroendocrine_tumor_program/ * * * * * * * * * * * * Have you visited this web site in the United Kingdom?NET Patient Foundation incorporating Living With Carcinoid * * * * * * * * * * * * 4th Worldwide NET Cancer Awareness Day was November 10, 2013 * * * * * * * * * * * * * * * * * * * * * * * * NET Guidelines from NANETS (North American NeuroEndocrine Tumor Society)
http://nanets.net/research/articles/nanets-guidelines Carcinoid & NET (neuroendocrine tumors) Cancer Fact Sheet 1. These orphan diseases (defined as occurring in less than 200,000 people) are currently diagnosed in approximately 5.4 of every 100,000 people in the United States population. 2. Over 90% of all carcinoid/NETs are initially incorrectly diagnosed and treated for the wrong disease. 3. The average duration from the onset of symptoms to proper diagnosis exceeds five years. 4. There are approximately 110,000 people living with carcinoid/NETs in the United States. 5. There are less than 100 carcinoid/NETs specialists in the U.S. 6. Many physicians are misinformed about carcinoid and neuroendocrine tumors, and believe that these cancers are benign, slow growing and don’t metastasize (spread). 7. Irritable Bowel Syndrome (IBS) and Crohn’s disease are the two most common misdiagnosed conditions for patients with midgut carcinoid. 8. Abdominal pain, flushing, diarrhea, wheezing, bloating, heart palpitation, weakness, skin rashes, heartburn and weight changes are the most prevalent symptoms of carcinoid & neuroendocrine tumors. 9. The average age of the current carcinoid/NETs specialist in the U.S. exceeds 60 years old and there are few younger physicians entering this specialty. Facts about the Carcinoid Cancer Foundation (CCF) 1. The Carcinoid Cancer Foundation was founded over 40 years ago in 1968. 2. CCF was originally founded to support Dr. Richard R.P. Warner’s research at the Serotonin Laboratory at Mt. Sinai in New York City after the completion of a research grant from the National Institutes of Health (NIH). 3. Dr. Warner, the Carcinoid Cancer Foundation’s Medical Director, is recognized as one of the leading carcinoid/NETs specialists in the world. 4. The mission of the Carcinoid Cancer Foundation is awareness, education, advocacy, and the support of research for carcinoid and NET cancers, all with the ultimate goal of finding a cure for these rare diseases. The mission can be summed up with this positive image: REACH – Research, Education, and Awareness with Compassion and Hope. 5. The Carcinoid Cancer Foundation’s website is, perhaps, the most visited carcinoid/NETs related website in the world, with over 1 million visitors during the past 10 years. 6. CCF serves thousands of patients, caregivers, family members, friends, and members of the public and the medical community annually with a toll-free education and support telephone line and by answering e-mails addressed to the Foundation. 7. CCF has been instrumental in the formation of nearly all (over 40) support groups for carcinoid/NETs patients throughout the United States. 8. CCF played a major role in the creation of NANETS (North American Neuroendocrine Tumor Society), which is the medical practitioner counterpart to the Carcinoid Cancer Foundation. 9. The Carcinoid Cancer Foundation is represented on the Steering Committee for Worldwide NET Cancer Awareness Day, an annual global campaign to bring about greater awareness of NET cancers. * * * * * * * * * * * * THE WARNER ADVOCACY AWARD* * * * * * * * * * * *
Visit the NEW Blog of the Carcinoid
Cancer Foundation, Inc.
* * * * * * * * * * * *
13th Anniversary of First Carcinoid Patient
Website:
|
|
Send mail to
SunnySusan@cox.net with
questions or comments about this web site.
|
