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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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-----Short Version
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Resource Library 

                                                                                                      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

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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 The Carcinoid Heart Center

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 NET Guidelines from NANETS (North American NeuroEndocrine Tumor Society)


Medical Imaging

Miracle House (place to stay when travel to seek consultation and / or treatment)

RxMed - Family Physicians Site - drug monographs

RxList - The Internet Drug Index

PharmWeb - Drug Information

Medical Glossary

Medical Dictionary from MedicineNet

General Medical Resources on the Internet

Ochsner Neuroendocrine Tumor Team

Cancer Net (formerly People Living With Cancer)

DocFinder - Assoc. of State Medical Board Executive Directors

Univ. of Penn.'s OncoLink

Tumor Atlas

Irritable Bowel Syndrome

Medical Encyclopedia via MEDLINE plus

Assisted Living Directory

Diagnostic Imaging (useful for ALL people, not just those with cancer)

Laboratory Tests (useful for ALL people, not just those with cancer)

Lab Tests On-Line

Journal of the American Medical Assoc. (JAMA)

Society of Interventional Radiology (they do CE's and RFA's)

American Society of Clinical Oncology (ASCO)

The Dartmouth Atlas of Health Care

Society of Nuclear Medicine

tandard clinical guidelines for various procedures

Web MD - more general medical information

Revolution Health

National Organization of Rare Diseases

DocFinder - Assoc. of State Medical Board Executive Directors

Medicine Online

National Institute of Health's Office of Alternative Medicine

Oncology information - Online action against cancer

Today's Caregiver Online

Advance Care Planning: Dorothy Garske Foundation

Metformin (for diabetes)

AZ Hospice & Palliative Care

Nutritional Concerns For The Carcinoid Patient

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 Resources

Therapeutic Humor

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

National Institute of Neurological Disorders and Stroke (with warning signs)

Nutrition and Fast Food Facts

Implanted Venous Access Ports

Patient Advocate Foundation

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

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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Information for your medical doctor and other medical professionals from CCF

Medical Reviews -

General Information About Carcinoid and Related Neuroendocrine Tumors -- WITH A BIG THANK YOU TO THE Carcinoid Cancer Foundation (CCF).  General Information About Carcinoid and Related Neuroendocrine Tumors.  This section contains links to websites and full-text and abstract versions of published papers that focus on general information (reviews) of diagnosis, treatment and current research in the field of carcinoid and neuroendocrine tumors.

Thank you to the Carcinoid Cancer Foundation, Inc. (CCF), for giving me permission to link directly to this important consensus report below.

Consensus Statements and Guidelines

 "This consensus report gives a detailed description of the use of somatostatin analogs in the management of neuroendocrine tumors of the gastroenteropancreatic system. As background information we have outlined critical aspects of the pathology, the use of tumor markers, a definition of functional and non-functional digestive neuroendocrine tumors, different imaging modalities, surgical considerations, liver embolization and the use of cytotoxic drugs as well as interferon. Included in the report is an overview of somatostatin, somatostatin analogs and its receptor expression in different neuroendocrine tumors. It will also define the binding affinities of different somatostatin analogs to the five different subtypes of somatostatin receptor. We compare the efficacy of octreotide and lanreotide in reducing diarrhea and flushing. Side-effects are described and we provide practical information on somatostatin analog treatment."

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 shall write additional articles, but not
on a set schedule. 
You may go to my Blog at
May need to go to archive for each month on right side
below my photo to open older Blogs.

Doing a Blog was fun, but it just took too much time so I stopped.

The following 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, Carol-Anne Wilson, Jim Weiveris
Click here for the video interviews (no longer available)

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

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 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

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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

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

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Send mail to SunnySusan@cox.net with questions or comments about this web site.
Copyright © 1997-2014 Susan L. Anderson. All Rights Reserved.
Last modified: 07/19/15