When “Sunny Susan” Anderson began her search on the Internet in 1995 for information about carcinoid cancer little did she realize that she would later create the first carcinoid patient website and become an extraordinary advocate for others seeking information and support. Susan has been selected as the 2012 Winner of the Warner Advocacy Award, established by Novartis Oncology in 2009 to commemorate the life and work of the late Monica Warner of the Carcinoid Cancer Foundation. The Warner Advocacy Award is presented annually to honor the patient, advocate, or caregiver who most embodies the passion, dedication, leadership, and spirit with which Monica Warner assisted patients, caregivers, and families affected by NETs.
Susan was described by the late Monica Warner as the “La Grande Dame of Carcinoid” for her extraordinary contributions to the carcinoid/NET community. She has helped patients around the world, sharing information on her website, www.carcinoidinfo.info, and has received and answered close to 100,000 emails from patients and their loved ones. Susan has been active in the carcinoid/NET community, including working with support groups, for more than 15 years.
Susan’s journey is an all-too common one for carcinoid patients. She suffered with abdominal pain, vomiting, flushing and bowel problems that baffled her physicians for 8 years before she was properly diagnosed in 1995. Two years later she found a carcinoid/NET specialist to treat her.
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.” She wanted to make sure that others with these rare diseases would have the guidance they needed so they did not have to spend years trying to be correctly diagnosed. On April 27, 1997, www.carcinoidinfo.info was born. As an advocate, Susan feels her mission is to share good solid information that can help people learn all they can about carcinoid/NET cancer. She urges patients to “consult with a doctor experienced in NET cancers; to pursue 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.”
Living well with carcinoid is evident in every part of Susan’s life – from travels with her beloved husband, Howard, to all of the 50 states in the USA, as well as exploring more than 20 countries around the world including riding on camelback in Australia, cruising the Baltic Sea, and swimming with seals in the Galapagos Islands; leading book groups; hosting weekly bluegrass music jam sessions; and her most recent projects, writing a memoir about her journey with carcinoid as well as a book on her family’s history. And this incredibly active woman will celebrate her 75th birthday this month!
Perhaps you met Susan when she spoke at the 1st International Meeting of Patient Self-Help Groups in Germany; joined her at the 2003 Carcinoid Support Group Leaders Meeting in California for which she served as facilitator; 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 (CCF) Symposium held at Mount Sinai Hospital in New York City; listened to her speak in the Faces of Hope video (watch the video on the Carcinoid Cancer Foundation’s YouTube channel, http://www.youtube.com/CarcinoidNETs) produced by CCF or had her touch your life in another way.
“I am humbled and most proud when I hear from people who I’ve helped tell me I am their angel and they probably would not be alive without me,” says Susan. She adds that she is extremely honored to be chosen to receive the Warner Advocacy Award because it is in the name of her dear friend, Monica.
Susan is truly a unique advocate for the carcinoid cancer and neuroendocrine tumor community. Visit her website and learn more about her journey. THANK YOU, SUSAN, for being the wonderful advocate that you are and for all you have done for the carcinoid/NET community.