Living with a rare disease is especially challenging on many levels. Carcinoid cancer and neuroendocrine tumor patients are acutely aware of these challenges – including getting a proper diagnosis and finding a physician who specializes in treating these cancers. These are the stories of carcinoid and NET cancer survivors who we find especially inspiring.
A transplant patient’s Christmas miracle is the title of an article in the Gainesville Times about Don Little. Nearly 100 well-wishers were at the airport recently to welcome Don, a pancreatic neuroendocrine tumor survivor, as he returned home for the holidays after recovering in the hospital for nearly 9 months from a multi-organ transplant involving his stomach, pancreas, liver, and small intestine. Read more
Don Little (far right), pancreatic neuroendocrine tumor survivor, and his wife Debbie with friends, Jerry and Beth Lathem, last Christmas, about 3 months before undergoing multi-ogran transplant surgery
Bob Thompson (left) and his physician, Dr. Joseph Tector
Five years ago Bob Thompson was given a preliminary diagnosis of pancreatic cancer and was told he would probably have less than 6 months to live. Bob actually had a neuroendocrine tumor on the pancreas. Read more about the incredible multi-organ transplant operation that changed his life: http://indy.st/u8l1e8. Click here to learn how he was diagnosed and about the surgery his doctor recommended.
A wonderful article about hope and strength — Kelly Taylor-Li is a pancreatic neuroendocrine tumor survivor in Massachusetts. This is her 14-year journey as a cancer patient, and about living life to the fullest every day. Read more
Master Sergeant Aki Summers
These are stories of courageous carcinoid and pancreatic neuroendocrine tumor (NET) survivors who, in several cases, experienced pain and illness for many years before being correctly diagnosed. Meet Tracy, Lindsey, Aki, Carolyn, Lisa, and Kari (see her video below). They serve as inspirations to other NET cancer patients, those who are newly diagnosed and those living with these rare diseases for many years. Their stories also bring hope, an essential factor on the journey of living with cancer. Read more
Cycling 10,000 miles a year! Carcinoid patient Reine Wiley is one of five Californians who’ve been named Breakaway from Cancer champions this year. Read more
Don Meyer, former record-breaking coach of the Northern State men’s basketball team, continues to be an inspiration. He learned he had carcinoid following his hospitalization due to a serious car accident. Undeterred, he returned to the sidelines “setting the new standard for coaching wins for a men’s college coach.” Now Don has embarked on a multistate tour where he speaks about leadership. Read more
Don Meyer, former Northern State men's basketball coach
The all-time leader in coaching wins in NCAA men’s basketball history, Don talks about his retirement. Read more
Imagine the strength, endurance, and determination it takes to run races and marathons. Now consider running with only one lung. This is an inspirational story about two lung carcinoid survivors: Deirdre Durant and Kenneth Todd. Read more
Stephanie Bennett is a 15-year-old MEN2A survivor. MEN (multiple endocrine neoplasia) is a neuroendocrine cancer that runs in families. Stephanie’s mom, sister, aunt, and three cousins also have this rare neuroendocrine disease. Stephanie’s softball teammates have been incredibly supportive during a difficult time. Read more
I also have Metastic Carcinoid Syndrome. My symptoms started in March 1981 and being a Nurse, I looked up everything and came to the conclusion that I had Carcinoiud Cancer. I asked many MD’s who never agreed. I was getting sicker as I grew older and finally changed Doctors in October, 2000 and after many test, they diagnosed me with Metastatic Carcinoid Syndrome. I have had small bowel resection and ovaries removed and receieve 40 mg. of 0ctreotide every 28 days (since Jan. 2001) and now feel better at 80 yrs of age than I did at 50. I now have Carcinoid Heart Disease but am doing well. I still play golf and bowl and am more active now than when I was younger. Thankyou
Harriet, you are an inspiration too!! If you would like to share your story on our website, that would be terrific — please see http://www.carcinoid.org/content/submit-your-story. It’s especially important for other carcinoid/NET survivors to see how long people can live with these rare cancers, even with metastases, with good care and follow-up. We hope we can all be as active at 80 as you are. You are truly incredible! Happy New Year from The CCF Team
I believe one of the best ways for others to learn about neuroendocrine cancers, including carcinoid cancer, and pancreatic neuroendocrine cancer, is to read stories such as these from our patient community. Many of our symptoms mimic oher conditions. Being able to suspect the possibility of a neuroendocrine or NET Cancer allows for early diagnosis and the chance at a longer life.
I am a Carcinoid patient from Canada, and thanks to help from the CCF, we found many fellow patients in Canada. We now have an organization, the Carcinoid NeuroEndocrine Tumour Society Canada, and we are helped a great deal, as we go forward, by the invaluable information on the Carcinoid Cancer Foundation website.
Thank you CCF for everything you do and all the best for 2012.
Maureen Coleman, President, Carcinoid Neuroendocrine Tumour Society Canada (CNETS Canada).
Thank you so much for your kind words, Maureen. CNETS Canada is a wonderful resource for NET cancer patients. You and your colleagues are also fantastic advocates. We are so appreciative for your work on behalf of the carcinoid/NET community! Especially for your invaluable conferences. For anyone who would like to see past conferences and learn more about CNETS Canada, here’s a link to their website: http://www.cnetscanada.org/.