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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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                ON-LINE SUPPORT GROUPS

Updated:  2 April 2016


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.


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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Association of Cancer Online Resources  (ACOR) is a non-profit organization that supports multiple mailing-lists for many kinds of cancer and their treatments, delivering almost 2 million messages each week.   CLICK HERE

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

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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 

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:

Zollinger Ellison Syndrome (ZES).  This is a support group for patients, caregivers, and family members.  It is the hope of list owners to offer current information, support, and knowledge so we can all be "in the know", for only in knowledge can we truly be a partner with our health care team.  Join us and welcome.  CLICK HERE

 Local support groups with a web site and/or communication via email

            NCNCF-subscribe@yahoogroups.com &

  NorCal CarciNet – (NCCN)
An affiliate of Calif. Carcinoid Fighters - (CALCF)
  Web: www.carcinoid-net.org

SUPPORT~EDUCATION~AWARENESS  (SEA) for those Living with Carcinoid
visit their website http://www.SEA4carcinoid.com 

website: http://www.ctcarcinoid.homestead.com 

New England Carcinoid Connection, Inc.  (NECC)
 Visit the website: http://www.carcinoid-newengland.org/

Capital Area Carcinoid Survivors (CACS)

 Metro Atlanta Carcinoid Awareness Group (MACAG)

Chicagoland Carcinoid Fighters
 web site at: 


Metro NY Carcinoid Support Group (MNYCSG)
Web site: http://www.carcinoid.us/ 

Carcinoid Cancer Awareness Network, Inc. (CCAN)

MidAtlantic Carcinoid-NeuroEndocrine Tumor Association (MACNETA) 

Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN)

Delaware Valley Carcinoid Connection


There is an on-line group for Canadians and some interested Americans.

Carcinoid Patients Organization in Poland

NET Patient Foundation incorporating Living With Carcinoid (in the UK)

Carcinoid-Neuroendocrine Tumour Society-Canada (CNETS)
Coming soon www.cnetscanada.org

We are pleased to announce that the Association of Cancer Online Resources (ACOR) has agreed to host a Listserv called Carcinoid-Dr.  Members of the Listserv communicate with each other by sending  e-mails to the Listserv, which then distributes the messages to all other members. This Listserv was activated in February 2006.
Membership in this Listserv is limited to healthcare professionals.  Carcinoid patients and their caregivers are welcome to tell the members of their medical team about this resource.  Any healthcare professional who wishes to subscribe should send an e-mail to carcinoid-dr-request@listserv.acor.org
and describe their professional credentials and their reasons for joining, and provide their office address and phone number.
 Feel free to share this information with other Carcinoid and neuroendocrine patients and their caregivers, as well as any healthcare professionals who you believe may be interested in participating in Carcinoid-Dr.

Please read last section on this page - below.  Thank you, Susan, 1-26-2009

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 19 years old on April 27, 2016, 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

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

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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