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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


Neuroendocrine Tumors (NETs) is the umbrella term for a group of unusual,
often slow-growing cancers, which develop from cells in the diffuse endocrine system.
They are found most commonly in the lung or gastrointestinal system, but they can
also originate in other parts of the body such as the pancreas, ovary, and testes,
among other sites.


2015 was an exciting year for me; it wa the 20th anniversary

of the diagnosis of my Carcinoid on 10 May 1995.

I am a 20 year survivor / winner!

This web site was 18 years old on April 27, 2015.

April 23, 2014 I began Dialysis every evening at home
due to being Stage 5 Chronic Kidney Disease.
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 I invite you to view a 90 second video on YouTube that is my "book trailer"
for "Becoming Sunny Susan" available in both softover and ebook (Kindle).

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

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 eighteen 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.  There are a multitude of photographs and a full/complete index.  Introduction by Dr. Richard R. P. Warner.

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  http://www.amazon.com/Becoming-Sunny-Susan-L-Anderson/dp/0989193306/ref=pd_rhf_cr_p_t_1_DGDW  page?   We know how valuable a positive recommendation can be.  I invite you to purchase my book online at ww.amazon.com.


Recently, I was awarded the 2012 Monica Warner Patient Advocacy Award for my work. Dr. Richard R. P. Warner, a national leader in carcinoid cancer research, wrote the forward of Becoming Sunny Susan. He said, “Hers is a survival story that makes good reading for the healthcare provider and for the newly diagnosed carcinoid patient and also for the advanced disease sufferer who may have been told “there is no effective treatment…”

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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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A must see/read by Bill Claxton of Singapore


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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, 2012, 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."

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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This web site will be 18 years old on April 27, 2015, and
my plan is to keep it updated for many years to come.

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Neuroendocrine Tumor Program

Ochsner, Kenner, LA  "The DREAM TEAM"

click here:  http://www.ochsner.org/programs/neuroendocrine_tumor_program/

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Have you visited this web site in the United Kingdom?

NET Patient Foundation incorporating Living With Carcinoid

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  The Carcinoid Heart Center (click to the left)

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NET Guidelines from NANETS (North American NeuroEndocrine Tumor Society)   


This information also in the sections of this web site under:
1) Monitoring Carcinoid, 2) Coping and 3) Resource Library


Carcinoid & NET (neuroendocrine tumors) Cancer Fact Sheet

1. These orphan diseases (defined as occurring in less than 200,000 people) are currently diagnosed in approximately 5.4 of every 100,000 people in the United States population.  

2. Over 90% of all carcinoid/NETs are initially incorrectly diagnosed and treated for the wrong disease.  

3. The average duration from the onset of symptoms to proper diagnosis exceeds five years.  

4. There are approximately 110,000 people living with carcinoid/NETs in the United States.  

5. There are less than 100 carcinoid/NETs specialists in the U.S.  

6. Many physicians are misinformed about carcinoid and neuroendocrine tumors, and believe that these cancers are benign, slow growing and don’t metastasize (spread).  

7. Irritable Bowel Syndrome (IBS) and Crohn’s disease are the two most common misdiagnosed conditions for patients with midgut carcinoid.  

8. Abdominal pain, flushing, diarrhea, wheezing, bloating, heart palpitation, weakness, skin rashes, heartburn and weight changes are the most prevalent symptoms of carcinoid & neuroendocrine tumors.  

9. The average age of the current carcinoid/NETs specialist in the U.S. exceeds 60 years old and there are few younger physicians entering this specialty.

Facts about the Carcinoid Cancer Foundation (CCF)

1. The Carcinoid Cancer Foundation was founded over 40 years ago in 1968.  

2. CCF was originally founded to support Dr. Richard R.P. Warner’s research at the Serotonin Laboratory at Mt. Sinai in New York City after the completion of a research grant from the National Institutes of Health (NIH).  

3. Dr. Warner, the Carcinoid Cancer Foundation’s Medical Director, is recognized as one of the leading carcinoid/NETs specialists in the world.  

4. The mission of the Carcinoid Cancer Foundation is awareness, education, advocacy, and the support of research for carcinoid and NET cancers, all with the ultimate goal of finding a cure for these rare diseases. The mission can be summed up with this positive image: REACH – Research, Education, and Awareness with Compassion and Hope.  

5. The Carcinoid Cancer Foundation’s website is, perhaps, the most visited carcinoid/NETs related website in the world, with over 1 million visitors during the past 10 years.  

6. CCF serves thousands of patients, caregivers, family members, friends, and members of the public and the medical community annually with a toll-free education and support telephone line and by answering e-mails addressed to the Foundation.  

7. CCF has been instrumental in the formation of nearly all (over 40) support groups for carcinoid/NETs patients throughout the United States.  

8. CCF played a major role in the creation of NANETS (North American Neuroendocrine Tumor Society), which is the medical practitioner counterpart to the Carcinoid Cancer Foundation.  

9. The Carcinoid Cancer Foundation is represented on the Steering Committee for Worldwide NET Cancer Awareness Day, an annual global campaign to bring about greater awareness of NET cancers.

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The award was established in 2009 by Novartis Oncology to commemorate the life and work of Monica Warner, who passed away in August of that year. Mrs. Warner was a strong advocate for patients through the Carcinoid Cancer Foundation, a neuroendocrine tumor (NET) patient advocacy group that continues to help countless people.

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 Visit the Blog of the Carcinoid Cancer Foundation, Inc.
URL:  http://carcinoid.wordpress.com

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On the Travel section of this web site, click button to your left:
Photos from some of our trips.

On photo pages click on any "thumbnail" image for a larger view.
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 13th Anniversary of First Carcinoid Patient Website:
Kudos to Susan Anderson

May 1, 2010 by The Carcinoid Cancer Foundation (CCF)

When she was finally diagnosed with carcinoid cancer in 1995, Susan Anderson
had already spent 8 years trying to find out what was the cause of her “anemia,”
pain, and losing 62 pounds in 6 months. Little ...

To read the full blog please click here: carcinoid.wordpress.com
Then scroll down to May 1, 2010

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PLEASE see the message from Dr. Eugene Woltering in the "Awareness" section of this web site.

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Assisted Living Directory

Also listed in Resource Library section of this web site

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Once-Monthly Somatostatin Analogue Increases Overall
Survival in Carcinoid Syndrome
 published May 16, 2005 in Medical News Today
by Dr. Lowell Anthony.
Click here  http://www.medicalnewstoday.com/articles/24501.php

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 A 5-Decade Analysis of 13,715 Carcinoid Tumors published 2003
in The American Cancer Society by Dr. Irv Modlin, et. al.
it is available at http://www.ncbi.nlm.nih.gov/pubmed/15599742
 search the title.  Notice in the full article --
the survival increased when Sandostatin was introduced.

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North American Neuroendocrine Tumor Society (NANETS)
is composed of physicians whose main mission is to increase
awareness and knowledge of neuroendocrine tumors and to
promote education through the dissemination and sharing of
information in the medical community . These physicians also
help to increase awareness within the general public of these
often rare conditions by working closely with global support

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The European Neuroendocrine Tumor Society (ENETS) is
composed of physicians whose main mission is to increase
awareness and knowledge of neuroendocrine tumors and to
promote education through the dissemination and sharing of
information in the medical community . These physicians also
help to increase awareness within the general public of these
often rare conditions by working closely with global support

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 Text of presentation given Sept. 30, 2006
Howard Anderson
“Living With Uncertainty: Specifically For Caregivers”

Click here  then scroll down

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*Please read last section on this page - below.  Thank you, Susan

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 will be 18 years old on April 27, 2015, and my plan is to keep it updated for 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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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 © 1997-2015 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