13th Anniversary of First Carcinoid Patient Website: Kudos to Susan Anderson

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 did she realize that diagnosis would also result in her becoming one of the strongest advocates for the carcinoid/neuroendocrine tumor community. 

Known as “Sunny Susan” for her effervescent personality and positive outlook, Susan decided to put up a website “to assist others by providing solid medical information and links to the same.” On April 27, 1997, she launched http://www.carcinoidinfo.info/, seeking to provide other carcinoid cancer patients with hope and to encourage them to get a second or third medical opinion.  “I did not want others to have to experience the years of pain and misdiagnosis that I experienced,” she explains. Her website is the first ever produced by a carcinoid patient.

Over time Susan expanded her website to include information and resources that  assist people dealing with carcinoid or another chronic disease, including “how to live an active and almost normal life.”  And Susan knows what it is like to live with not one cancer but two as well as a chronic disease.  She was diagnosed with Infiltrative Ductal Carcinoma (IDC) breast cancer in June of 1999 and she has Type 2 diabetes.  She describes herself as a “WINNER” over these two very different types of cancer.

Answering e-mails from around the world, Susan has “encouraged people to:

  • learn all they can about their kind of carcinoid/cancer
  • consult with a doctor experienced in carcinoid
  • do aggressive treatment, if appropriate, for their case
  • to not obsess over their disease, and to
  • get on with life, give thanks for each and every day, and live life to the best of their ability.”

Susan says many friends have told her that she is a “prime example of someone who is actually living with carcinoid.”  And clearly by her travels and numerous activities this is the case.  Since her diagnosis, she and her beloved husband, Howard, have visited all 50 states in the USA; explored nearly 20 countries as diverse as Australia, Germany, France, and Brazil; cruised among the icebergs and penguins of Antarctica; swam with the seals in the Galapagos Islands; cruised with the whales and wildlife in the Sea of Cortez/Baja, Mexico; viewed polar bears up close in a moveable lodge on the shore of the Hudson Bay; and dog sledded in Wyoming. A truly intrepid traveler!  She is also a bibliophile and a lover of bluegrass music.

She has made many “friends without faces” from around the world over the Internet and describes herself as “fortunate to have met many of these online friends at conferences and other places over the years.”  Susan says her “life has been enriched by the many interesting and courageous people I have met, currently ‘know,’ and am in contact with!  I love and appreciate each and every one!”

Susan and Howard Anderson with Galapagos Islands seals

Perhaps you met Susan when she spoke at the 1st International Meeting of Patient Self-Help Groups in Germany; saw her in the DVD “Be Well Informed about Carcinoid Syndrome” in the “Healthy Living Tips” section produced by Axon Communications and Novartis Oncology; heard her speak on the panel, “Living with a Rare Cancer” at the 2009 Carcinoid Cancer Foundation Symposium, “On the Cutting Edge:  Advances in Surgery for Carcinoid and Neuroendocrine Tumors” held at Mount Sinai Hospital in New York City; or had her touch your life in another way.

Susan Anderson is truly an extraordinary advocate for the carcinoid cancer and neuroendocrine tumor community.  Visit her website, read her blog or send her an e-mail at SunnySusan@cox.net. She promises to read it! Perhaps one of the greatest tributes paid to Susan Anderson was when the late Monica Warner, the driving force behind the Carcinoid Cancer Foundation for over two decades, described her as “La Grande Dame de Carcinoid.” THANK YOU, SUSAN, for being the wonderful advocate that you are and for all you have done for the carcinoid/NET community.

A member of Red Hat Society, Dec. 2003

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