NEUROENDOCRIN/CARCINOID CANCER

Carcinoid A rare form of "slow-growing" neuroendocrine cancer

Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness

                ON-LINE SUPPORT GROUPS

Updated:  2 April 2016

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2016 is an exciting year for me; it is the 21st anniversary

of the diagnosis of my Carcinoid on 10 May 1995.

I am a 21 year survivor / winner!

This web site was 19 years old on April 27, 2016.

April 23, 2014 I began Dialysis every evening at home
due to being Stage 5 Chronic Kidney Disease.

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My book Becoming Sunny Susan is now available in softcover and ebook!  
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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The ACOR CARCINOID Cancer On Line Support Group began 2 April 1997 -- now has more than 500 participants.   This is a forum for questions, answers, factual information, tips on living with this type of cancer, treatments, shared experiences, a bit of humor,  poetry, plus good things to think about, and a place to receive and give emotional support.  The messages are archived for all to use. To join the ACOR Carcinoid Cancer On Line Support Group: CLICK HERE

CARCINOID (Yahoo) Online Information and Discussion Group (NEW description)
This is a moderated e-mail list for patients or primary caregivers, researchers, and physicians to discuss clinical, nonclinical issues and advances pertaining to carcinoid/gastric NETs. This includes patient experiences, hormone-induced psychological issues, new research, clinical trials, and discussions of current treatment practices. The list has several physicians as members or patients who provide answers to questions on all fields of research and treatment of the gastric group of neuroendocrine tumors.  This list has never been a support list and has always been moderated to maintain a low noise to valuable message ratio so its archives comprise almost 19,000 entries of useful information about the disease.  The membership of this list has been in excess of 1,000 for at least the last 5 years or longer.  The owner is a 34 year survivor with active carcinoid cancer.

This is an INFORMATION/DISCUSSION elist. This is NOT a support group. As with all lists, the archives are available to anyone with a password and username.
Click here to access the archives or to sign up for this group Carcinoid-y-subscribe@yahoogroups.com

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LUNG NOIDS
This is a carcinoid online group dedicated to lungnoids and other foreguts.  This group was started because the standard of treatment for lung/stomach/pancreatic noids is different than the intestinal noids.
To join go to  http://groups.yahoo.com/group/lungnoids

MEN1 Support Group
MEN1 is a hereditary syndrome that causes tumors—mostly endocrine—in different organs. Sometimes, but not often, carcinoid tumors develop.
This list was created for patients, family members, and caregivers to offer caring, support, guidance, and up-to-date information on living and coping with Multiple Endocrine Neoplasia Type 1 (MEN1).  All are welcome to join.  CLICK HERE

NET Islet Cell Tumor Support Group   NET_isletcell@yahoogroups.com
Islet cell tumors are some of the rarest of the neuroendocrine tumors, and include VIPomas, gastrinomas, insulinomas, glucagonomas, and pancreatic islet cell carcinomas. Some islet cells are non-functional. They do not produce a hormone that, as of yet, the medical profession can identify or a syndrome that they recognize.   This is an information and education group for patients, family members and medical professionals dealing with islet cell tumors. This list is monitored by medical professionals, and is a good place to ask general questions about your disease and for people to share their clinical experiences. This isn't a support list. If you need support, please contact the list owner privately and she will offer you support resources. To join this group email them at:  NET_isletcell@yahoogroups.com (NEW address)

NOID Friends:  "We are here to share about all kinds of topics -- carcinoid (of course), medical articles, health insurance, medicines, treatment options, member experiences, symptom management, medical providers, case management, dealing with doctors and other medical providers, Social Security Disability (Carcinoid qualifies), emotional issues, family concerns, caregiver info and support, understanding procedures, learning to be a better patient, dealing with a chronic illness, specialty labs, and so much more.  If you can think of it, we can discuss it.  We are all in this together." 
To join send an email to: noids-subscribe@topica.com

Copyright © 1997-2016 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