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Carcinoid A rare form of "slow-growing" neuroendocrine cancer

Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness

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  Updated: 27 April 2017


27 April 2017 this web site was 20 years old, the 1st by a Carcinoid patient!


There is HOPE for those diagnosed with Carcinoid/NETS. 

I've started my 23rd year of active, full life: May 10, 1995 -- May 10, 2017.

April 27, 2017 was the 20th anniversary of this page;
 the FIRST by a Carcinoid patient.


April 23, 2014 I began Dialysis every evening at home
due to being Stage 5 Chronic Kidney Disease.

My memoir book Becoming Sunny Susan is now available
softcover and ebook!  By Susan L. Anderson           

NEW -  Click on http://www.youtube.com/watch?v=sBZnPOGHf-8

to view the 90 second book trailer video from YouTube!

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 18 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  page? We know how valuable a positive recommendation can be.

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 - Jul 19, 2013  - http://youtu.be/NiIDsVEiZQk

What is a healthy diet for neuroendocrine tumor patients? If a NET patient has carcinoid syndrome which foods should be avoided? Are supplements recommended for carcinoid/NET patients? When NET patients have problems related to malabsorption and various therapies, what changes should be made in their diet? These are among the many questions answered by Jeffrey I. Mechanick, MD and Leigh Anne Kamerman Burns, RD, CDN in the Carcinoid Cancer Foundation's video, Nutrition and Neuroendocrine Tumors.

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 - Breaking news from the West Coast – a Phase III clinical trial using targeted radiation for patients with intestinal carcinoid cancer that has spread beyond the intestine has opened at the Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute in Los Angeles, California. Edward M. Wolin, MD, medical oncologist and co-director of the Cedars-Sinai Carcinoid and Neuroendocrine Tumor Program, is the study's principal investigator. In this investigational therapy, a radioactive molecule, Lutathera, is targeted to attach to cancerous cells with little radiation exposure to the rest of the body. Read more about the Cedars-Sinai trial here, http://www.cedars-sinai.edu/About-Us/News/News-Releases-2013/Cedars-Sinai-opens-first-of-its-kind-trial-in-western-US-for-metastatic-carcinoid-cancer-patients.aspx. For details about eligibility, click here: http://www.clinicaltrials.gov/ct2/show/study/NCT01578239?term=carcinoid&rank=28&show_locs=Y#locn.

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Do check the FUN section of this web site for some relaxing web cams!

The Carcinoid Heart Center

Worldwide NET Cancer Awareness Day  

Association of Cancer Online Resources

R. A. Bloch Cancer Foundation, Inc.

Cancer Net (formerly People Living With Cancer)

Revolution Health

National Coalition for Cancer Survivorship (NCCS)

Medical Imaging

Journey of The Heart - A Healing Place in CyberSpace

An Inspirational Guide for the Recovering Soul  

National Cancer Institute  800-4-CANCER   (800-422-6237)

Coping from National Cancer Institute

Cancer Support from National Cancer Institute

The Wellness Community   (National information)

Exceptional Cancer Patients

People Living With Cancer

National Coalition for Cancer Survivorship (NCCS)

National Family Caregivers Association (NFCA)

Quack Watch -- battles health related (including diet) frauds, myths, fads, and fallacies - VERY IMPORTANT!

Today's Caregiver Online

Advance Care Planning: Dorothy Garske Foundation

AZ Hospice & Palliative Care

Cancer & Nutrition

ASK The Dietitian: The Site for Sound Nutritional Advice

Center for Science in the Public Interest - Nutrition Action Healthletter

CyberDiet - answers questions about foods and a healthy lifestyle

Blonz Guide to Nutrition, Food and Health Resource

Fast Food facts

Patient Advocate Foundation

Field Guide to Wildlife of Cancer

Lyrica (for neuropathy)

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Carcinoid Cancer Foundation Releases New Video Series
Beginning with “The ABC’s of Carcinoid/NETs”

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.)
      "If you don't suspect it, you can't detect it."  http://www.youtube.com/watch?v=5IqspD6YDEo

3rd Video is about LUNG Carcinoid/NETs. http://youtu.be/_nOtls5R_Yc

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Additional video that are not part of this series but are available on YouTube.
http://www.youtube.com/user/CarcinoidNETs.  Two are listed below but there are others, be sure
they are from the Carcinoid Cancer Foundation  (CCF) for good medical information

Surgery and Treatment Options for NET Cancers

What 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

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Mildred “Millie” Kowalski, of Novartis Oncology announced at the Carcinoid Conference, in New Orleans, 9/22/2012 that I, Susan Anderson, am the recipient of the 2012 Warner Advocacy Award. I was sorry that we were unable to attend.  I am honored and thrilled to receive this very meaningful award!  Dr. Richard R. W. Warner, at my request, accepted this award on my behalf.



Susan L. Anderson, or "Sunny" Susan as she's affectionately known, has dedicated her life to people affected by carcinoid/neuroendocrine tumors (NETs) and has become an energetic advocate for, and educator of, the disease. Her journey began on May 10, 1995, when she was diagnosed with carcinoid cancer after an 8-year-long battle through one misdiagnosis after another.

Susan immediately began researching the disease and soon learned there wasn't much information available about NETs. Many doctors believed patients with NETs had a short time to live. Born with a self-proclaimed "type A" personality, Susan refused to accept the supposed facts. She says, "I was told by every doctor to 'learn to live with it.' Probably the average person would accept that. I refused to and because of that I'm still alive."

Through her research, Susan discovered Monica Warner's website for the Carcinoid Cancer Foundation. From that moment on, Susan Anderson, Monica Warner, and Dr. Richard Warner formed a team determined to bring attention to this uncommon disease and advocated tirelessly for patients everywhere.

Recognizing the need for greater patient support, Susan created the first website about NETs by a patient, which celebrates its 15th anniversary this year. The site, carcinoidinfo.info, continues its success in assisting people affected by the disease, and has more than 380,000 visitors. In addition to this "labor of love," Susan has dedicated her time to personally answering more than 100,000 e-mails, assisting patients and caregivers from around the world. Susan's in-depth relationships within the carcinoid/NET community even allow her to refer international patients to support groups in their respective countries.

Susan has attended numerous conferences throughout the world as a guest speaker, including the first International Meeting of Patient Self-Help Groups in Berlin, Germany. One of her fondest memories is from 2009, when Dr. Richard Warner invited Susan to take part in a 12-person panel of patients with carcinoid cancer at the Patient Support Advisory Board meeting in New York. When not attending conferences, Susan participates in many boards and support groups, some of which she has founded.

"Sunny" Susan has her nickname for a reason. Each step of her journey has been accompanied by unwavering optimism, determined energy, and an incredible zest for life. It makes sense that her daily goals are to "have some good 'belly laughs,' assist others, and live each day to its fullest enjoying each and every one."

Susan is honored to share recognition alongside the late Monica Warner, the pioneer of Patient Advocacy for NET patients who was also a dear friend. The recognition also extends to amazing patient advocates everywhere, including Maryann Wahmann and Jan Naritomi-Hart, the 2010 and 2011 Warner Advocacy Award recipients, respectively.

Please visit the Warner Advocacy Award Guest Book and leave a message congratulating our 2012 winner.


Novartis Patient Advocacy

Novartis Oncology Affairs and Patient Advocacy provide support to patients through an array of programs and services


The NET Alliance

The NET Alliance is a Novartis Oncology initiative to help improve outcomes for patients with NETs


"Ode tp Noids”
Wonderful song by David in the UK

See and hear it on YouTube


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The Carcinoid Poem click here

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 I "Sunny Susan" was invited to write a Blog on the web site of the Arizona Republic newspaper as they have liked letters I have written to the editors over the years.  March 26, 2008 was my first Blog.  I have written additional articles, but not on a set schedule.  You may go to my Blog at http://www.AZcentral.com/members/Blog/sunnysusan

May need to go to archive for each month on right side
below my photo to open older Blogs.

05/12/2008  Poem: Friends Without Faces

05/12/2008  13th Anniversary of Carcinoid Diagnosis May 10, 1995

04/28/2008  Neuroendocrine Tumor assistance via web page for 11 + years

04/19/2008  Book Discussions in Arizona (1983 – 2008)

04/10/2008  The Best Things In Life...Aren't Things

04/01/2008  Living a full active life with a rare cancer

Doing a Blog was fun, but with everything else going on
it took too much time and I stopped.

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NANETS Guidelines   February 7, 2011

NET Guidelines from NANETS (North American NeuroEndocrine Tumor Society) 


Carcinoid Cancer Foundation (CCF)
The culmination of years of dedicated efforts by a host of worldwide experts, the NANETS (North American NeuroEndocrine Tumor Society) consensus guidelines present an up-to-date synthesis of the best available knowledge on the classification, diagnosis, and treatment of NETs. Please share these guidelines with any physician or healthcare professional who might benefit from this important resource.

NANETS - NANETS Guidelines



 NANETS Guidelines

·        The North American Neuroendocrine Tumor Society (NANETS) Guidelines: Mission, Goals, and Process.
Authors: Kvols, Larry K. MD *; Brendtro, Kari L. +
DOI: DOI: 10.1097/MPA.0b013e3181eb7451

·        The Pathologic Classification of Neuroendocrine Tumors: A Review of Nomenclature, Grading, and Staging Systems.
Authors: Klimstra, David S. MD *; Modlin, Irvin R. MD, PhD +; Coppola, Domenico MD ++; Lloyd, Ricardo V. MD, PhD [S]; Suster, Saul MD [//]
DOI: DOI: 10.1097/MPA.0b013e3181ec124e

·        NANETS Consensus Guidelines for the Diagnosis of Neuroendocrine Tumor.
Authors: Vinik, Aaron I. MD, PhD *; Woltering, Eugene A. MD +; Warner, Richard R. P. MD ++; Caplin, Martyn MD [S]; O'Dorisio, Thomas M. MD [//]; Wiseman, Gregory A. MD [P]; Coppola, Domenico MD #; Go, Vay Liang W. MD **
DOI: DOI: 10.1097/MPA.0b013e3181ebaffd

·        NANETS Treatment Guidelines: Well-Differentiated Neuroendocrine Tumors of the Stomach and Pancreas.
Authors: Kulke, Matthew H. MD *; Anthony, Lowell B. MD +; Bushnell, David L. MD ++; de Herder, Wouter W. MD, PhD [S]; Goldsmith, Stanley J. MD [//]; Klimstra, David S. MD [P]; Marx, Stephen J. MD #; Pasieka, Janice L. MD **; Pommier, Rodney F. MD ++; Yao, James C. MD ++++; Jensen, Robert T. MD [S][S]
DOI: DOI: 10.1097/MPA.0b013e3181ebb168

·        The NANETS Consensus Guideline for the Diagnosis and Management of Neuroendocrine Tumors: Well-Differentiated Neuroendocrine Tumors of the Jejunum, Ileum, Appendix, and Cecum.
Authors: Boudreaux, J. Philip MD *; Klimstra, David S. MD +; Hassan, Manal M. MD, PhD ++; Woltering, Eugene A. MD *; Jensen, Robert T. MD [S]; Goldsmith, Stanley J. MD [//]; Nutting, Charles DO [P]; Bushnell, David L. MD #; Caplin, Martyn E. MD **; Yao, James C. MD ++
DOI: DOI: 10.1097/MPA.0b013e3181ebb2a5

·        The NANETS Consensus Guidelines for the Diagnosis and Management of Gastrointestinal Neuroendocrine Tumors (NETs): Well-Differentiated NETs of the Distal Colon and Rectum.
Authors: Anthony, Lowell B. MD *; Strosberg, Jonathan R. MD +; Klimstra, David S. MD ++; Maples, William J. MD [S]; O'Dorisio, Thomas M. MD [//]; Warner, Richard R.P. MD [P]; Wiseman, Gregory A. MD #; Benson, Al B. III MD **; Pommier, Rodney F. MD ++
DOI: DOI: 10.1097/MPA.0b013e3181ec1261

·        The North American Neuroendocrine Tumor Society Consensus Guideline for the Diagnosis and Management of Neuroendocrine Tumors: Pheochromocytoma, Paraganglioma, and Medullary Thyroid Cancer.
Authors: Chen, Herbert MD *; Sippel, Rebecca S. MD *; O'Dorisio, M. Sue MD, PhD +; Vinik, Aaron I. MD, PhD ++; Lloyd, Ricardo V. MD, PhD [S]; Pacak, Karel MD, PhD, DSc [//]
DOI: DOI: 10.1097/MPA.0b013e3181ebb4f0

·        NANETS Consensus Guideline for the Diagnosis and Management of Neuroendocrine Tumors: Well-Differentiated Neuroendocrine Tumors of the Thorax (Includes Lung and Thymus).
Authors: Phan, Alexandria T. MD *; Oberg, Kjell MD, PhD +; Choi, Junsung MD ++; Harrison, Lynn H. Jr MD [S]; Hassan, Manal M. MD, PhD [//]; Strosberg, Jonathan R. MD [P]; Krenning, Eric P. MD, PhD #; Kocha, Walter MD **; Woltering, Eugene A. MD ++; Maples, William J. MD ++++
DOI: DOI: 10.1097/MPA.0b013e3181ec1380

The NANETS Consensus Guidelines for the Diagnosis and Management of Poorly Differentiated (High-Grade) Extrapulmonary Neuroendocrine Carcinomas.
Authors: Strosberg, Jonathan R. MD *; Coppola, Domenico MD +; Klimstra, David S. MD ++; Phan, Alexandria T. MD [S]; Kulke, Matthew H. MD [//]; Wiseman, Gregory A. MD [P]; Kvols, Larry K. MD *
DOI: DOI: 10.1097/MPA.0b013e3181ebb56f 

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Click here to email me SunnySusan@Cox.Net (Please see below)

Please read last section on this page - below.  Thank you, Susan, 1-26-2009

Since 1996 --- when I first located others with Carcinoid --- I have answered every email sent to me, although some replies were delayed longer than I liked. I am NO longer able to reply to all e-mails due to the volume and other things going on in my life (all good).  I do love hearing from others, but an unable to reply to all individually.  I shall not forget my many Carcinoid friends and of course shall reply to you … as time permits. 

This web site was 20 years old on April 27, 2017.

Since my husband "retired" I am away from my computer for days, and sometimes, weeks at a time.  Yes, there is wireless internet and we have tried that a number of places.  But, if I deal with email when we are away from home then it is not a "restful vacation" for me.

PLEASE use the SEARCH capability at the top my pages.  You may search for a word, a phrase, a drug, a treatment, a book title or anything you can think of. You may search this site only, or search the complete World Wide Web.

To speak with a person please know you may call the “telephone information and support line” of the Carcinoid Cancer Foundation, Inc. (CCF), Tuesday through Thursday  10 a.m. to 4 p.m. Eastern Time at  1-888-722-3132 (free) or 1-914-693-1001.   “The information and support line” is staffed by medical professionals.   Mondays and Fridays are research days, if you call then and do not reach a person do leave a clear message.  The Carcinoid Cancer Foundation’s (CCF) superb web site is at http://www.carcinoid.org

CCF -  Serving the carcinoid/NETs  patient and medical community for 
nearly 50 years (chartered in 1968)
   “Meets Extensive Standards of America’s Most Experienced Charity Evaluator”
Better Business Bureau

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DISCLAIMER:  I am a patient and NOT a medical doctor or health care professional.  I share information and links to information that has been helpful to me and that I believe to be correct and good, but I cannot guarantee the accuracy of this information, except for MY stories.  I urge you not to rely only on this information but I believe you should discuss your situation and information with your medical doctors and/or other medical professionals.  "Sunny" Susan Anderson

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Last modified: 07/19/15