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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:  27April 2017
                                                            My SHORT Carcinoid Story


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



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 ebookBy Susan L. Scott

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

to view the 90 second book trailer video from YouTube!

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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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I am an advocate for Carcinoid Cancer awareness and self-help support groups for Carcinoid patients and their families.  I am a survivor of a neuroendocrine cancer called Carcinoid, diagnosed May 10, 1995, and also Infiltrative Ductal Carcinoma (IDC) breast cancer, diagnosed June 18, 1999.  Fortunately for those of us with Carcinoid it is a slow growing cancer or most of us would have died before the diagnosis was found.  I am thankful I have always been an optimist; I see the glass as half full and not half empty.

I call my quest for a diagnosis “The Trials and Tribulations of Sunny Susan”.  In 1987 I was diagnosed as anemic, for the first and last time, no cause was ever found, but I was told it was “stomach bleeding”.  After years of searching for cause of abdominal and stomach pain, during surgery for an obstruction May 10, 1995, I finally had a diagnosis - Carcinoid Cancer, a slow growing neuro-endocrine cancer. 

The previous six months I had lived on ice cream milk shakes, vomiting when tried to eat anything else, in severe constant pain, and lost 62 pounds.   I had bright red “flushing” of the face, neck, chest and arms, which doctors ignored when my husband and I would mention this symptom.  I would not have been flushing without metastasis in my liver.  Over the years I consulted with several doctors, was admitted to the hospital many times for partial bowel blockages, and underwent multiples tests searching for answers.  Testing included: upper and lower GI’s, ultrasounds of liver, pancreas and abdomen, sigmoidoscopy, colonoscopy, barium enema with air, cat scans of chest, abdomen, pelvis, gastrointestinal endoscopy, stomach lining biopsy, liver biopsy, chest x-rays, mammograms, hydrogen breath test, gall bladder surgery, small bowel enteroclysis, and much blood work, but NEVER for the things that would have shown the presence of a neuro-endocrine tumor (Chromogranin-A., Serotonin, etc.).  Since then I have had several bone density scans, nuclear OctreoScans and heart echocardiograms.

What I found on the internet when I started my search in 1995 was mostly old, and I refused to accept what I read -- that with a diagnosis of Carcinoid I had only from 2 to 5 years to live.

It has been said that Carcinoid is a "looking good cancer" -- most of us look healthy and others can not tell that we have a terminal disease; also Carcinoid is one of the most costly cancers to treat -- because many people live with it for years and / or decades, thus have long-term treatment costs.  I saw four doctors, in Arizona, all were “wait and see – do nothing”.  I had the same "complaints" – pain various places, diarrhea, constant severe fatigue, and weakness I was told many times that Carcinoid is a “chronic illness” and to "learn to live with it".   No, I did not care to accept that passive role!

My search for cause of stomach and abdominal pain began in 1987 and did not end until 1998 when I consulted in person with one of the worlds leading experts on Carcinoid, Dr. Richard R. P. Warner, M.D., of New York City, who turned my life around!

After my diagnosis and treatment, I felt a very strong desire to assist others in their search for information and in starting local self-help groups. Since I am a Type A personality and have always reached out to assist others it was only normal for me to share the information I had found through research with others.  I have never been bored a day in my life and never have enough hours in the day or days in the week.   I now maintain 77 mailing-lists in my computer address book of people who either have Carcinoid or a interest in Carcinoid.   I send information to all of my mailing-lists when new research papers by Carcinoid expert doctors, such as the doctors at this conference, are available.

April 27, 1997, I put up my web page http://www.carcinoidinfo.info.  I provide information for medical / drug databases, information from leading Carcinoid doctors on how to treat and monitor Carcinoid, local Carcinoid support groups, humor, books, Bluegrass music, prayer lists, travel, political issues, Arizona information, cowboy poetry, and much more that may assist a person in leading a full and active life while LIVING with Carcinoid; and have links to information I wish had been on-line when I started my research.  I am happy to assist others in their quest for information and understanding, not only from my page, but from the many links available; and in starting local Carcinoid support groups for self-help. 
his page was 20 years old,
April 27, 2017.

In 1999 I assisted Bea  in the formation of the Capital Area Cancer Survivors (Maryland, Washington, D.C. & Virginia) support group by speaking with her on the telephone, emailing her ideas for setting up a group, suggesting topics that could be presented to a group, and sharing names of some people living in her area for her to contact.  Later I assisted in the formation of the local support groups in Arizona, Ontario Canada, Texas and other locations.  I am happy to send out how to organize and topics for discussion to anyone that asks me for assistance.  I list local support / self-help groups on my web page at: support.htm

In August 2001 I became a board member of a new forming California Carcinoid Fighters (CalCF) self-help support group.  Although living in Arizona I flew over monthly for the board meetings and programs.  CalCF put on a large international Carcinoid conference in Sept. 2003.  Later I resigned from this board and am concentrating my energy on my web page and replying to the email pleas for help that are generated by my web page.

I believe anyone with a diagnosis of Carcinoid Cancer, or ANY kind of cancer needs to be pro-active and assertive.  We may be assertive without being disagreeable.  The key is practicing “The Golden Rule”, being pleasant and nice to everyone at all times, but being persistent and clear in saying what we want done,  which reports we expect to receive, and asking questions.   All doctors and their staff are people too, who must deal with stress and a heavy work-load.   Always be polite, smile, and nice to the doctor, and his staff, we need them to be our friends and not dread seeing our name on the appointment sheet.

Dr. Warner started me on Sandostatin (octreotide acetate) in early 1998, switched to Sandostatin LAR (long acting release) in 1999; added Interferon Alfa 2-b in 1999 and switched to Peg Intron-A in 2003.  This joint treatment, along with my second surgery in October 1999, that included a liver resection, has me stable.

The CAT scans in December 1999 showed a nodule at the base of my lung, which had not been there during the October 1999 surgery.  I chose to wait as I had not been on Interferon Alfa 2-b very long.  The CAT scans in May 2000 were negative; the nodule at the base of my lung was no longer there.  I feel the combination of Sandostatin LAR and Interferon Alfa 2-b (now Intron-A) shrank the nodule and has kept everything under control since then, as all CAT scans, done twice a year, are negative.

Routine testing is part of every person’s life who is dealing with Carcinoid, and requires an aggressive doctor.  Once each year I have mammograms and twice each year I have CTs of chest, abdomen and pelvis.  Three times each year we do testing of:  5-HIAA 24-hour urine test, Serotonin Serum, Serotonin Whole Blood, Tryptophan and Chromogranin-A, plus CBC (complete blood count),  Hepatic Profile, Lipid Panel, Hemoglobin A1c, TSH, and any other test my local oncologist or internists believes is necessary at the time.  Monthly we draw blood for a CBC and flush my Groshon porta catheter.

What I am doing in regard to my Carcinoid is pro-active, and it is not right for everyone.  We all must feel our own way as to how we wish to take care of ourselves and our cancer; there are no right or wrong ways, just different ways.   This is what works for me; it may not work for everyone.

December 2004, I was diagnosed with Type 2 Diabetes, so now have an additional
challenge regarding learning about a disease and managing it. 

There have never been enough hours in the day for me.    I have no way of knowing how long I will have this level of GOOD quality life (pain-free and having energy).  My goal is to make the most of each day, count my blessing, have some good “belly laughs”, assist others, and live each day to its fullest enjoying each and every one.  I fully expect to die of “old age” and not “carcinoid” I remain optimistic about my future.  As my wonderful husband, Howard, says "each day is a gift"!

Feel free to drop me a line, if you would like to "visit" or ask questions. 

To email me SunnySusan@Cox.Net  (Please see below)
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Mildred “Millie” Kowalski, of Novartis Oncology announced at the Carcinoid Conference, in New Orleans, 9/22/2012 that I, Susan Anderson, am the recipient of the 2012 Warner Advocacy Award. I was sorry that we were unable to attend.  I am honored and thrilled to receive this very meaningful award!  Dr. Richard R. W. Warner, at my request, accepted this award on my behalf.



Susan L. Anderson, or "Sunny" Susan as she's affectionately known, has dedicated her life to people affected by carcinoid/neuroendocrine tumors (NETs) and has become an energetic advocate for, and educator of, the disease. Her journey began on May 10, 1995, when she was diagnosed with carcinoid cancer after an 8-year-long battle through one misdiagnosis after another.

Susan immediately began researching the disease and soon learned there wasn't much information available about NETs. Many doctors believed patients with NETs had a short time to live. Born with a self-proclaimed "type A" personality, Susan refused to accept the supposed facts. She says, "I was told by every doctor to 'learn to live with it.' Probably the average person would accept that. I refused to and because of that I'm still alive."

Through her research, Susan discovered Monica Warner's website for the Carcinoid Cancer Foundation. From that moment on, Susan Anderson, Monica Warner, and Dr. Richard Warner formed a team determined to bring attention to this uncommon disease and advocated tirelessly for patients everywhere.

Recognizing the need for greater patient support, Susan created the first website about NETs by a patient, which celebrates its 15th anniversary this year. The site, carcinoidinfo.info, continues its success in assisting people affected by the disease, and has more than 380,000 visitors. In addition to this "labor of love," Susan has dedicated her time to personally answering more than 100,000 e-mails, assisting patients and caregivers from around the world. Susan's in-depth relationships within the carcinoid/NET community even allow her to refer international patients to support groups in their respective countries.

Susan has attended numerous conferences throughout the world as a guest speaker, including the first International Meeting of Patient Self-Help Groups in Berlin, Germany. One of her fondest memories is from 2009, when Dr. Richard Warner invited Susan to take part in a 12-person panel of patients with carcinoid cancer at the Patient Support Advisory Board meeting in New York. When not attending conferences, Susan participates in many boards and support groups, some of which she has founded.

"Sunny" Susan has her nickname for a reason. Each step of her journey has been accompanied by unwavering optimism, determined energy, and an incredible zest for life. It makes sense that her daily goals are to "have some good 'belly laughs,' assist others, and live each day to its fullest enjoying each and every one."

Susan is honored to share recognition alongside the late Monica Warner, the pioneer of Patient Advocacy for NET patients who was also a dear friend. The recognition also extends to amazing patient advocates everywhere, including Maryann Wahmann and Jan Naritomi-Hart, the 2010 and 2011 Warner Advocacy Award recipients, respectively.

Please visit the Warner Advocacy Award Guest Book and leave a message congratulating our 2012 winner.


Novartis Patient Advocacy

Novartis Oncology Affairs and Patient Advocacy provide support to patients through an array of programs and services


The NET Alliance

The NET Alliance is a Novartis Oncology initiative to help improve outcomes for patients with NETs


Since my diagnosis my husband and I have: spent two weeks on the ocean edge in Kauai, Hawaii (1997),  have taken a two week cruise to and from Alaska (2000), taken a two week cruise to and from Hawaii (2004), in addition to other trips and activities. (Please see my "Travel" section for the latest and also photographs.) In January 2004 I took a Mexican cruise with three gals from my Red Hat Society chapter, and in March 2004 another friend (who also went on Mexican cruise) and I had a very high energy, adventure trip to Costa Rica. My husband and I enjoyed a winter 2005 trip to Wyoming to dog sled, snow mobile, snow cat with visits to Yellowstone National Park and Teton National Park, Wy (were also there on 9/11/2001).  In Oct. 2005 we had the "trip if a lifetime" two plus weeks in the Galapagos Islands, Ecuador. We then did a Whales and Wildlife Cruise in the Sea of Cortez / Baja, Mexico in January 2006.  We drove to the Carcinoid Conference in Portland, OR, Sept. 2006 and took more than a month coming home down the Oregon and California coasts.   During the summer of 2007 we enjoyed a 13 1/2 week driving trip to and from Alaska.  We frequently mention that each and every day of the Alaskan adventure was wonderful!  Later in 2008 we visited the Polar Bears north of Churchill, Manitoba, Canada.  We were gone February, March and early April 2009 for a great trip to New Zealand and Australia! In January and early Feb. 2010 we visited Iguascu Falls in Brazil, cruised among the icebergs and penguins of Antartica, also visited Argentina, Chile, the Falkland Islands,  and Uruguay.  In July 2010 we went to Easter Island, Chile, to observe the total solar eclipse (photos on my TRAVEL page on this web site).  We also visited: Tahiti, Moorea and Bora Bora, French Polynesia, in 2010, and have a wonderful, but too short, time.  In fall 2011 we did back to back cruises, 11 day Baltic Sea and 19 day Re-Positioning cruise visiting: Denmark, Sweden, Finland, Russia, Estonia, Norway, Scotland, Ireland, Northern Ireland, Iceland, Greenland and Nova Scotia, Canada ending in Fort Lauderdale, Florida.

With those trips I have visited ALL 50 states of the USA, plus Canada, Mexico, France, Switzerland, England, Wales, Germany, Costa Rica, Ecuador, New Zealand, Australia, Brazil, Argentina, Chile, Falkland Islands, Uruguay, Antartica, French Polynesian, Denmark, Sweden, Finland, Russia, Estonia, Norway, Scotland, Ireland, Northern Ireland, Iceland and Greenland.  We "camp" (now in a small motorhome) here in Arizona, often taking my husbands 10" telescope so he can take deep space photographs; we also "camp" at Bluegrass Festivals and Bluegrass music camp-outs.  We enjoy travel and the out of doors, in addition to art, music,  history, science, books and new technology.  We both like to learn new things all of the time.  I am now trying to return to my genealogy ..... scan photographs, autograph books, newspaper articles and then "write" my autobiography mixed in with family history.   What is right for one person is NOT correct for another one.  But, I believe in "The Golden Rule" and try to practice that.

It has been said that Carcinoid is a "looking good cancer" -- meaning most of us look very healthy, have good color and others can not tell when meeting us that we have a terminal disease.  It has also been said that Carcinoid is one of the most costly cancers to treat -- because many people with it live for years and / or decades, thus have long-term treatment costs.  I have heard from people who were diagnosed in the late 1960's and early 1970's which is encouragement for all of us.

Daily I try to count my blessing , have at least one good "belly laugh" over humor, review positive poems and good things to think about, and live each day to its fullest enjoying each and every one!  I remain optimistic about my future!  I have no way of knowing how long I will have this level of GOOD quality life, but my goal is to make the most of it for as long as possible! As my wonderful husband, Howard, says "each day is a gift"!

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http://www.carcinoid.org/content/survivor-stories -

Personal survival (winner) stories, Websites & blogs

Many personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors --survivor stories  --medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. These websites range from personal and support group sites both national and international.

United States

  • "My Carcinoid Story" by Susan Anderson - New Link
    La Grande Dame de Carcinoid
    This is the first and oldest online personal website created in 1997. Susan is a carcinoid patient and awareness advocate way beyond that time. Her website has a wealth of information and should be one of the first personal websites you should visit. She is a longtime Carcinoid and Breast Cancer survivor with an aggressive approach to maintaining an active and lifestyle.
    "I was diagnosed with Infiltrative Ductal Carcinoma (IDC) Breast Cancer on June 18, 1999. There is NO connection to Carcinoid, this is completely different! I had a lumpectomy, and did 33 sessions of radiation, but no chemo. I went for mammogram every 6 months for 5 years and now go each year. All is well. Getting those mammograms is very important, do it gals! More on my web site www.carcinoidinfo.info  I am a 10 year survivor, but I do not like the word survivor, how about winner!"
    "Lead a full and active life while LIVING with Cancer" is her motto. - You will find many additional personal web-pages on her site as well as information and links to medical/drug databases, support groups, humor, books, music, prayer lists, travel, political issues, AZ info, cowboy poetry, and much more!
    READ MORE on Susan's Blog http://www.azcentral.com/members/Blog/sunnysusan/50634?&wired

What Monica Warner had on the web site … she added “winner” in May 2009.

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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 page was 20 years old, 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

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

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