NEUROENDOCRIN/CARCINOID CANCER

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

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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

When we, a patient, are told we have Carcinoid cancer, the usual response is, "What?".   Carcinoid is a rare form of "slow-growing" neuroendocrine cancer.  Fortunately there is more information being put on the Internet daily, and much more than when I started researching my disease in May 1995.  It has been said, "If you must have cancer, this is the one to have, as it is relatively slow growing, and many patients live for 5, 10, 15, 20 years, or even much longer."  Carcinoid is a disease where the patient and his or her family need to be aggressive, and pro-active, in order to locate a physician knowledgeable and interested in carcinoid to treat them!

Below are are some excellent sites for you to learn more about Carcinoid.   If you will COME BACK TO MY WEB SITE  FREQUENTLY,  when you have a question, you will often find a link to just the information you are searching for, and thus save time and effort.  If in a hurry be sure to use the new SEARCH button at the top of the page.  I am always happy to hear about new and useful URL's, so let me know when you find something really useful, I will appreciate your input!  If you wish to put a link from your page to my page (not copy all of my words and work though)  please ask me -- in the past I have always said "yes" and very willingly shared research and link information.  I hope you will take the time to read "My Story".  If you are short of time try to read the short version of "My Carcinoid Story".  

"Carcinoid cancer Web site an inspiration" and "Woman turns pain to gain" -- 7 October 1999 Arizona Republic 

Susan Anderson's Home Library of Cancer / Healing / Wellness / Medical Books

Support Board .. For Creative Cancer Patients .. Susan Anderson

Checklist for the newly diagnosed

Nutritional Concerns For The Carcinoid Patient
Developing Nutrition Guidelines For Persons With Carcinoid Disease
Presented by Monica E. Warner, M.D., R.D., C.D.N.
Sarasota, Florida May 11, 2000

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Dr. Richard R. P. Warner, M.D., Associate Clinical Professor of Medicine, The Mount Sinai School of Medicine, New York, NY and is the Medical Director of The Carcinoid Cancer Foundation, Inc. (CCF).   His activities as a practicing physician are totally separate from his activities with the Carcinoid Cancer Foundation.   Director of Development and Research Coordinator of the CCF is Monica Warner, MS, RD, CDN.  I recommend reading the articles linked further up on this page.  

Dr. Warner is the author of a very useful article titled "Exploring Carcinoid Tumors: They have been described as cancer in slow motion"  that appears on pages 48 & 49 of the January/February 2001 issue of Coping with Cancer Magazine.   The magazine has graciously given me permission to reprint this article. Click on this line to see the article.

"Psychological Effects of Carcinoid Disease: A Study for Carcinoid Patients and their Caregivers" was conducted on-line March 7, 2001 through May 28, 2001. Elizabeth Soliday, Ph.D., Assistant Professor of Psychology, and Suzanne Smith, Ph.D., Assistant Professor of Human Development, at Washington State University Vancouver, conducted this study on the ways carcinoid disease has affected your development.   The purpose of this research was to better understand the psychological effects of long-term illnesses that require many life adjustments and extensive treatments.  The findings are expected to help inform professionals about ways to assist individuals and families affected by carcinoid disease, such as helping family members understand more about the effects of treatment and the factors that may help ease the impact of the illness.  The Departments of Psychology and Human Development and the Washington State University Institutional Review Board (IRB) approved this project, and it is supported by a grant from the Carcinoid Cancer Foundation, Inc., New York, NY. First report posted 1 July 2001. Click on this line to read the first report from this important study.
 

The Arizona Republic Newspaper, Phoenix, AZ, published a nice color picture of me (taken by Cheryl Evans), and an article about CARCINOID by Peter Ortiz on Thursday, October 7, 1999, in their Tempe, Mesa, and Chandler editions.  The next week the picture and article appeared in the Scottsdale edition and several of the Phoenix editions.  Above my picture it says "Carcinoid cancer Web site an inspiration", the caption under my picture reads "Susan L. Anderson was misdiagnosed from 1987 to 1995 by several doctors who could not explain why she constantly was doubled over in pain.  Finally, carcinoid cancer was diagnosed.  Anderson created her own Web site on the cancer.  It's used as a reference guide and for inspiration."  Under that the headline reads "Woman turns pain to gain".   This article is no longer on the newspaper's web page, so click here to see and read the article.

In mid-November 1999, Susan was one of four people interviewed (via e-mail and telephone) for an article on "rare cancers", in which CARCINOID is discussed.  "Celebrity's Death Spurs Interest in Rare Cancers" by Tom Reynolds appeared in the Journal of the National Cancer Institute, Vol. 91, No. 24, 2070-2071, December 15, 1999.

A major pharmaceutical company invited twelve Carcinoid activitists from around the USA to a "Patient Support Advisory Board" meeting.   I was quite honored to have been invited to participate and share what I had learned.   We discussed how to best aid those of us dealing with Carcinoid, plus support groups and conferences.  The meeting took place in New York City in late November 2001.
 

 

I was honored to be invited to, and able to attend the November 2004, 1st International Meeting of Patient Self-Help Groups "Current standards in diagnosis and therapy of neuroendocrine tumors" in Berlin, Germany.  This was a wonderful opportunity and experience to meet and hear presentations from top doctors from Sweden, France, Netherlands, the USA and Germany; plus meeting other survivors working with support groups, and/or web pages, from Germany, Netherlands, France, Sweden, the USA and England.   Report from 1st International Meeting of Patient Self-Help Groups for patients with neuroendocrine tumors.  Saturday, November 20, 2004, Berlin, Germany

August 8, 2000, I (Susan) had a letter to the editor published in USA Today (newspaper).  The title of my letter was "Ford's stroke highlights fears over diagnosis".    For the first time, that we know of, "carcinoid cancer" and "Carcinoid Cancer Foundation" appeared in print in USA Today.   August 11, 2000, a follow-up letter, by Glenn McGinnis,  titled "Diagnosis awareness" was printed also talking of the earlier letter and "carcinoid cancer".  Two more follow-up letters,  "Correct diagnosis" by Pamela S. Cole, and "Carcinoid a 'brutal killer'" by Elizabeth Mason  were published in USA Today on August 23, 2000.  Carcinoid cancer was again mentioned in two letters by me (Susan) - "Sympathy for McCain" August 20, 2000, in The Arizona Republic; and "John McCain: A U.S. role model" August 21, 2000  in USA Today. Carcinoid in letters to the editor of USA Today

Starting in the summer of 2001 through 1 November 2003 I was honored to serve on the Board of Directors of a new group: California Carcinoid Fighters (CalCF).   There are links to this group under "Local Carcinoid Support Groups."  CalCF hosted a very successful Carcinoid Conference in Santa Ana, CA, Oct. 24 & 25, 2003, please see list of speakers and topics in the Conferences - Past section of this web site.
 

I was a member of the first steering committee of the North American Alliance of Patients with Neuroendocrine Tumors (NAAPNET) that was organized at the support group leaders breakfast after the carcinoid tumor conference in New Orleans, LA, Sept. 2004.  I resigned June 15, 2005.   The Mission Statement:  To create an alliance, to offer resources, and to facilitate the efforts of Carcinoid and other Neuroendocrine Tumor (NET) support groups, patients, and caregivers in North America.  March 2005, (2008 no longer an active group or web page).
 

California Carcinoid Fighters -- Board of Directors

Click on image to see a larger picture of the CalCF Board of Directors.
 

November 2001 Stephen Pazan, President Nik Neville, Publicity Morris Bialick, Treasurer Susan Anderson, Board Member Terry Wright, Secretary

May 4, 2002 Stephen Pazan, President      Morris Bialick, Treasurer   Nik Neville, Publicity      Terry Wright, Secretary      Dr. Eugene Woltering, (Medical Advisor)        Susan Anderson, (Arizona representative)

Oct. 2003 Susan Anderson, Board Member Pat Gerenday, Secretary Stephen Pazan, President Morris Bialick, Treasurer

Oct. 2003 Dr. Eugene Woltering Medical Advisor

 

Jean Mickelson was founder and Director of The National Carcinoid Support Group (NCSG).  Jean's web page was the FIRST "carcinoid" page on the Internet!  The National Carcinoid Support Group ceased operations at the end of June 2002.  So there is no more newsletter, no web site and no more NCSG.  Jean was truly a pioneer - trail blazer, her publication "Rays of Hope" and her organization is missed by those of us in the Carcinoid community.

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