14 Inspirational Carcinoid and Neuroendocrine Tumor Survivor Stories

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 Lifftle (far right), a pancreatic neuroendocrine tumor survivor, his wife Debbie and friends, Jerry and Beth lathem

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

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

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 

Reine Wiley, carcinoid cancer survivor, named a Breakaway from Cancer champion in California

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 mens basketball coach

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

Deirdre Durant, Superlung, carcinoid cancer survivor and runner with one lung!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 survivorsDeirdre Durant and Kenneth Todd. Read more

Kenneth Todd, carcinoid cancer survivor, runs marathons with one lung!

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

Stephanie Bennett has a rare neuroendocrine cancer, MEN2A, that runs in families

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  • Harriet R. Hannigan

    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 https://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/.

  • Candace

    I have Hypercalcemia with no known cause. I have been to several doctors, had a bowel resection, cyst covered ovaries removed and have been hospitalized four times in the past two years. No one seems to know what is causing my electrolyte imbalance, but a shipboard doctor on a recent cruise suggested that I have my doctor check into Carcinoid Syndrome. The tests that I’ve had so far do not point in that direction. They all know that I have a tumor or tumors somewhere in my body. Thyroid biopsies. ultra sound and scans were done, that showed nothing. They’ve done CT Scans, blood tests, 2 colonoscopies, endoscopy and of course surgery. After the endoscopy, they said that the gallbladder has sludge and gravel, but they don’t think it has anything to do with my Hypercalcemia.

    I week before my cruise, I two martinis with friends. It seems that I didn’t tolerate them well at all. I asked my friend to drive me home. I hadn’t been drinking much for at least six weeks before. I was on a cleanse for four weeks before this event and not drinking at all while on the cleanse. For a couple of days before this event I had developed a cotton mouth and was constantly drinking water. That night, in the middle of the night, I woke up with a terrible pain in my lower left back. I thought that I had somehow cracked a rib, but couldn’t figure out how I had done that in the middle of the night…..in bed!!! I had just gotten over six weeks of pain with a rib in my left mid back that kept slipping out of place. It hurt all the way through my breast bone. This new pain in my lower left flank went from the back to the stomach. Although it wasn’t at all sensitive when pressed. The cotton mouth continued. I couldn’t get enough water…..and no it wasn’t Diabetes. After my electrolytes were balanced and I was released from the hospital my cotton mouth went away.

    After I got sick on our cruise, I thought it might be Diverticulitis, but it wasn’t sensitive in the usual bottom lower area. The shipboard doctor thought it was Diverticulitis so he had me take my meds that I had with me. Either the illness or the meds made me super nauseated. I could keep nothing down for a day. Therefore, thinking it was the meds he put me on hospital meds. I was only allowed fluids for three days. Then on to low residue diet. When I failed to improve he figured out that it wasn’t Diverticulitis. He had no answers, but as I said above, he wanted me to check into Carcinoid Syndrome. (Anybody ever lose 8 pounds on a 15 day cruise….that wasn’t sea sick?) I had cotton mouth the entire time on the cruise and most of the time in my hospital stay.

    I told the ship doctor about my Hypercalcemia bout in 2011. He was the doctor and lab tech. He said that he did an electrolyte panel, but I have my suspicions on how thorough the test was.

    The day after I got home my GI doctor ordered a blood panel done and my Calcium was at 14.4. I was admitted that night! I spent a week in the hospital doing more testing, but to no avail. They did a 24-hour urine test which yielded about 2-1/4 gal of urine along with lots of blood tests . Loads of calcium in the urine. Another blood test showed that I was dehydrated after being on a drip and drinking at least a gallon of water a day. The CT Scan showed nothing wrong with my rib in the back and nothing in the lower stomach. Everything presented normally.

    They were able to balance my electrolytes by Saturday and I was released to go home. However, they still have no clue as to what the cause is. The last doctor I went to, told me to salt my food more than usual and drink more water to hold in the Calcium.

    I need an excellent diagnostician and will go wherever need be to be seen by the right doctor. First of all I would really like to know if there is anyone out there that has the same experience and was able to solve it. Secondly, I would love a doctor referral. I would appreciate any ideas or similar experiences that could help.

    Thanks so much!

    • Candace

      I was also diagnosed with gastritis! Please add to the my post if possible.

  • Miss NET

    I had hypercalcemia for awhile at the beginning of August due to my neuroendocrine tumors. I constantly felt nauseated, urinated all the time and couldn’t really eat. Lots of fluids and a drug called Zometa were used to lower my calcium. It eventually helped and when I also got my sandostation (octrotide) injection, it seemed to help control the calcium. I was super thirsty until my calcium was under control. My tumors were in my liver and when they were recently removed, they found that they were positive for “tricking” my body into thinking there wasn’t enough calcium in the blood therefore causing my body to release it from the bones. Now that the tumors are gone, they are monitoring me to make sure my calcium doesn’t drop too low. Hopefully my story can help you find different treatment options or diagnostic tests to try.