CARCINOID CANCER
A rare form of "slow-growing" neuroendocrine cancer
Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness
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CARCINOID CANCERA rare form of "slow-growing" neuroendocrine cancerSusan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness
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below or use SEARCH above. 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". Susan Anderson's Home Library of Cancer / Healing / Wellness / Medical Books .... Updated: Dec. 6, 2006Support Board .. For Creative Cancer Patients .. Susan AndersonREVIEW OF CARCINOID CANCER (Jan. 2005) MEDICAL OPINIONS: DIAGNOSIS AND TREATMENT (Updated 2007) Checklist for the newly diagnosed Newly diagnosed please review this
FAQ (Frequently Asked Questions) These articles, medical references, diet/nutrition, plus much more, and links to other factual/solid information, appear on the Carcinoid Cancer Foundation , Inc. (CCF), 333 Mamaroneck Avenue #492, White Plains, NY 10605 (CCF) web site. CLICK HERE. The (non-profit) Carcinoid Cancer Foundation, was chartered by the state of New York in 1968 for the purpose of encouraging and supporting research and education on carcinoid tumors and related neuroendocrine neoplasma. The CCF is NOT a treatment center. The CCF provides information and education to the public, and medical professionals, encourages and supports research in Carcinoid and related diseases; and does not get involved in patient care or medical services. This is the BEST web site re: Carcinoid - in my opinion. Telephone: 212-722-3132, 1-888-722-3132, Fax: 212-831-3031. The Research and Educationsl activities of the CARCINOID CANCER FOUNDATION are made possible by your contributions. Contributions can be made by mail, telephone or on-line, ALL contributions are tax-deductible. 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. The office where he practices medicine is at 1751 York Avenue, New York, NY, Phone: 212-722-2100. 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. 
Photo of Susan giving presentation at the
first Patient Support Advisory Board meeting in New York City, Nov. 2001.
(click on photo for larger image)
NEW - I "Sunny Susan" was invited to write a Blog -
NEW Book Discussions in Arizona (1983 – 2008)http://www.azcentral.com/members/Blog/sunnysusan/21868 Deadliest Catch – I am hooked!http://www.azcentral.com/members/Blog/sunnysusan/21839
The Best Things In Life...Aren't Things
To Quote Others in a Blog?
You may go to my Blog by clicking on the line below or one 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, Carol-Anne Wilson, Jim Weiveris Click here for the video interviews 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. Journal of Human Cancer 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, web page:
http://www.naapnet.org
 From Left to Right: NAAPNET Steering Committee 2004 - 2005 Susan Anderson ..... Arizona ..... Vice Chair (Resigned June 16, 2005) Carol-Anne Wilson ..... Texas ..... Chair Jim Weiveris ..... New Jersey ..... Secretary Linda Silversmith ..... Maryland ..... Treasurer Cynthia Marrs ..... Oregon ..... Member (on leave of absence) California Carcinoid Fighters -- Board of DirectorsClick on image to see a larger picture of the CalCF
Board of Directors.
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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.
Used with permission from the author
Leslie H. Sobin M.D., FRCPath
Posted: 21 February 2006+ + + + + + + + + +
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. This web site was10 years old on April 27, 2007, and my plan is to keep it updated for many many years to come.
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
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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+ + + + + + + + + +
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