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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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CLICK on any underlined topic 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.


Many of these are NEW links although same topic!

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My book
Becoming Sunny Susan is now available in softcover and ebook!  
Click on News 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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 Sandostatin Official Website Sandostatin LAR Depot

Sandostatin® LAR Depot (octreotide acetate for injectable suspension)
CLICK HERE:  www.sandostatin.com

Carcinoid Information Center - sponsored by Novartis Pharmaceuticals Corp.

Internet Sandostatin Cost Survey (summer 2003 by Dr. Woltering)

5-HIAA (urine test)

Preparing for the 24-hour urine test, 5-HIAA

Chromogranin A (CgA)
A blood tumor marker used for detection of certain cancers. Chromogranin A is considered the best general neuroendocrine serum or plasma marker available both for diagnosis and therapeutic evaluation and is increased in 50-100% of patients with various neuroendocrine tumors. Chromogranin A serum or plasma levels reflect tumor load, and it may be an independent marker of prognosis in patients with midgut carcinoids. The measurement of CgA is considered "the gold standard" of chemical tests for confirming the diagnosis of carcinoid and neuroendocrine tumors and following their course. 

Chromogranin A  (CgA) Click then scroll down to CgA

Serotonin, Whole Blood

What is Interferon

Peg Intron-A

Combination Therapy with Octreotide and Alpha-interferon
by Richard R.P. Warner M.D., Medical Director of The Carcinoid
Cancer Foundation, Inc., Comment May 10, 1999 (
Updated 2005)

   - Radiofrequency Ablation of Unresectable Hepatic Malignancies

  - Chemoembolization #1

  - Treatments for Liver Metastases

Ki67 - Cell Proliferation Marker
The Ki-67 biomarker is a proliferation index that is detected by a process
called immunohistochemical staining. When a tumor cell tests positive for Ki-67, the tumor is actively growing.

Frequently Asked Questions

Treatment Options -

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

Society of Nuclear Medicine

American Society of Clinical Oncology (ASCO)

Radiological Society of North America


Rosacea - flushing with "adult acne"

Oncology Channel - Carcinoid Malignancy

Color Photos of Malignant Carcinoid Tumor of the Small Bowel

Irritable Bowel Syndrome

Neuropathy - The Neuropathy Associaton

Rx Neurontin

Medical Encyclopedia via MEDLINE plus

Medical Glossary from the Carcinoid Cancer Foundation

Coping With Carcinoid Diarrhea

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

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
National Institute of Neurological Disorders and Stroke

Summary of Carcinoid-Related Papers presented at The Society of Nuclear Medicine 2004 Meeting, prepared by Seza Gulec, M.D.

Summary of Carcinoid-Related Papers presented at The Society of Nuclear Medicine 2003 Meeting, prepared by Seza Gulec, M.D.



Checklist for the newly diagnosed

FAQ (Frequently Asked Questions)

NET Tumor Advisor

The following video interview is no longer available on-line.
Video FAQs of Susan Anderson (done at Carcinoid Conference in New Orleans, Sept. 2004)
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 page, CLICK HERE

Implanted Venous Access Ports

Information for your medical doctor and other medical professionals from Carcinoid Cancer Foundation

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."


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 f
more than forty 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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Copyright © 1997-2014 Susan L. Anderson. All Rights Reserved.
Last modified: 07/19/15