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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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click on any below

  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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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

     Due to travel and other factors I am not writing a Blog at this time, but earlier ones are   still on-line and available.  See below on this page for some of the articles/Blogs.

Please scroll through all of this section.

PERSONAL STORIES (click on any below)

NM - Kathy's Story
CO - Nurse Jeanne Lambert's story 
CO - Second Nurse Jeanne Lambert's story

CA - Bill Evan's Story click here -Updated Aug. 2010
Md - Larry's Carcinoid Story & web page

AZ - My Carcinoid Story .... Susan L. Anderson
AUSTRALIA - Eric Gully's story & web page
TX - Stu's experiences with RFA  Oct. 2000
Susan's pictures from the Carcinoid Conferences: Sarsaota (2000),
Tampa (2002), Santa Ana (2003) & New Orleans (2004)

 (click on any below)

Capital Area Carcinoid Survivors (CACS) NEW- http://members.cox.net/cacsva/index.htm
Metro NY Carcinoid Support Group (MNYCSG)
The New England Carcinoid Connection 

CA -
SEA (Support, Education & Awareness for Carcinoid  Patients)
IL Chicagoland Carcinoid Fighters
CA - Neuroendocrine Cancer Fighters (NCF) mailing-list
PA Carcinoid Cancer Advocacy Network (PCCAN)
ET Patient Foundation incorporating Living With Carcinoid www.netpatientfoundation.com
England -The Hammersmith Hospital Carcinoid and
    Neuroendocrine tumour service
Germany - BS NET e.V. Carcinoid Support Group (only in german )
 Carcinoid Patients Organization in Poland

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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


           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.

Date & Title of my Blogs  http://www.azcentral.com/members/Blog/sunnysusan/

05/23/2008  09:01 AM Senator Edward “Ted” Kennedy

05/22/2008  03:24 PM  The Missing Man Formation

05/22/2008  02:21 PM   It is the soldier ..... remember our veterans!

05/12/2008 08:43 AM  Poem: Friends Without Faces

05/12/2008 08:40 AM 13th Anniversary of Carcinoid Diagnosis May 10, 1995

04/28/2008  02:50 PM Neuroendocrine Tumor assistance via web page for 11 + years

04/19/2008  10:59 AM Book Discussions in Arizona (1983 – 2008)

04/10/2008 11:09 AM: The Best Things In Life...Aren't Things

04/01/2008 12:19 PM: Living a full active life with a rare cancer

03/26/2008 08:36 AM: To Blog or not to Blog, that is the question

You may go to my Blog by clicking on the line below or one
of the blue lines above: 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.

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This video interview is no longer on-line.
Interviews on video made at the 2004 New Orleans
Carcinoid Conference
Some of the things discussion are answers to questions commonly
asked by newly diagnosed patients.  Eugene A. Woltering, MD., Gregory D. Espenan, M.D., Daniel Frey, M.D., Susan Anderson (see below), Carol-Anne Wilson, Jim Weiveris
Click here for the video interviews

Susan: Why did you decide to create your own Web site?
Susan: What is your current state of health?
Susan: How often do you have your carcinoid disease
indicators checked?
Two additional questions and Susan's replies on the web site

AZ - Jim - Arizona Artist Specializing In Beautiful Landscapes
AZ - Jim - Painting My Cancer!

SOME NEWS ARTICLES (click on any below)
Nurse Jeanne Lambert's story  
Second Nurse Jeanne Lambert's story
TX - Dawn's story from San Antonio Express-News 8-26-02
AZ - Susan's article - from - Arizona Republic 10-07-99
"Exploring Carcinoid Tumors'  by Dr. Warner in Coping With
Cancer Magazine

Restaurateur's death puts focus on disease - The Tribune 1-9-02
Carcinoid in letters to the editor of USA Today

Memorial Pages for those who lost their
fight with Carcinoid

The Carcinoid Cancer Foundation
Reach for a Cure

Liz's Grove in memory of Elizabeth van Horn Taylor
Gerard Bond, 6-29-2005

Return to top of homepage

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 close to forty years (chartered in 1968)
   “Meets Extensive Standards of America’s Most Experienced Charity Evaluator”
Better Business Bureau

The Carcinoid Cancer Foundation
Reach for a Cure

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Our mentor and guiding light is gone.  Monica shall be missed more than I can put into words!  Susan


May 16, 1937 – August 7, 2009

It is with profound sorrow that The Carcinoid Cancer Foundation Board of Directors and staff announce the death of Monica Warner, a driving force behind the foundation for over 20 years. Mrs. Warner died unexpectedly on Friday, August 7, 2009. We extend our deepest sympathy to Richard R.P. Warner, M.D., and his family on the passing of his beloved wife, Monica.

Since 1987 Mrs. Warner served as CCF’s Director of Development and Research Coordinator. She was instrumental in helping bring about the carcinoid cancer/neuroendocrine tumor support groups throughout the United States and was extremely proud to see the number of support groups grow from the first support group in 1996 to over 40 groups today.

Mrs. Warner was also solely responsible for The Carcinoid Cancer Foundation’s outstanding website. She created the site in 1996 and it grew under her leadership to serving individuals from 119 countries worldwide. Nearly 1,000,000 people have visited the CCF website since its inception.

In addition to her work with the foundation, Mrs. Warner was a registered dietitian, certified dietitian-nutritionist, and certified diabetes educator, with a Master of Science degree in Nutrition and Public Health from Columbia University in New York City and a Bachelor of Science degree in Food and Nutrition from Teachers College in Stockholm, Sweden. She had a private nutrition practice; worked at St. Agnes Hospital in White Plains from 1982 to 1987, where she was the Nutrition Education Coordinator; and served as an adjunct professor in nutrition at Westchester Community College. Earlier in her career she was a nutritionist for the Dairy Council of Metropolitan New York, a research nutritionist at Albert Einstein College of Medicine in the Bronx, and a clinical dietitian for the Swedish Consul General in New York City.

A Renaissance woman, Mrs. Warner had a wide variety of interests ranging from speaking four languages to a passion for both photography and flying. She earned her private pilot’s license in 1988 and flew several types of planes, including a stunt plane. Last summer, she participated in a National Geographic photography program in France, where her photographs were selected as among the best by trip participants. Her photographs have long been seen on the Carcinoid Cancer Foundation website, particularly from conferences throughout the United States and in Europe.

Mrs. Warner is survived by her husband Richard R.P. Warner, M.D., Professor of Medicine at The Mt. Sinai School of Medicine in New York and Medical Director of The Carcinoid Cancer Foundation; daughter Nancy Coste, her husband and their two children of Brussels, Belgium; son Charles Falker, his wife and their two children of New Rochelle, New York; Dr. Warner’s four children, Dr. Jon J.P. Warner, his wife and their four children of Weston, Massachusetts; Keith R.P. Warner and his daughter of Denver, Colorado; Douglas C.P. Warner, his wife and two children of Portland, Oregon; Lynn S. Unipan, her husband and their two children of Ambler, Pennsylvania; and longtime household member Elisabeth Herche. Mrs. Warner also has many brothers and sisters and extended family living in Sweden.

It was Mrs. Warner’s wish for continuation of the many activities of The Carcinoid Cancer Foundation and to enable this, donations can be made in her memory to The Carcinoid Cancer Foundation, 333 Mamaroneck Avenue, # 492, White Plains, NY 10605, or online at http://www.carcinoid.org (click on the Donate Now button on the home page) with a Visa, MasterCard or American Express, or by calling 888-722-3132, Tuesday through Thursday, 10 am to 4 pm, Eastern Time.

Services for Mrs. Warner were held privately.
































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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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Copyright © 1997-2017 Susan L. Anderson. All Rights Reserved.

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Last modified: 07/19/15