For over two decades, my husband Lance – unknowingly, until the very end – battled carcinoid cancer. Like many who eventually discover their real condition, a diagnosis remained frustratingly elusive: Doctors, at different times, thought that Lance had food allergies, anxiety or depression, colon cancer, or liver cancer. Meanwhile, a good friend of mine and I did our own research and requested that the doctors order carcinoid cancer detection tests for Lance. Sure enough, the test results confirmed what we had already begun to suspect: Lance had carcinoid cancer — and upsettingly the cancer had progressed to an advanced stage. Although Lance participated in a few trials and tried some experimental drugs, he lost his fight in 2007. And I lost my husband, who would have turned 68 on the first of this month. I share this story today so that I can help spread awareness on carcinoid cancer and NETs. We couldn’t save my husband, but I hope that we can save someone else’s child, spouse or grandparent.
November is Carcinoid Cancer Awareness Month, and Nov. 10 is Neuroendocrine Tumor (NET) Day. Carcinoid tumors, which belong to the family of growths called neuroendocrine tumors, were first described and accepted as a named disease – Carcinoid Syndrome – in 1954. “Carcinoid” means tumors that fall between carcinomas, or aggressive tumors, and adenomas, or benign tumors. It wasn’t until the 1990s, however, that the development and availability of the medication Sandostatin made treatment a real, viable option for patients. Carcinoid cancer is sometimes referred to as “cancer in slow motion,” because the tumors grow slowly over a long period of time. In fact, some insignificant small carcinoids can last a lifetime. They occur in approximately 1 in 100 individuals, and they cause no problems. Most often, carcinoid tumors arise from neuroendocrine cells in the small intestine, appendix, rectum, lungs and pancreas. In the United States, roughly five new clinically significant carcinoid cases are diagnosed each year per 100,000 individuals, which makes carcinoid tumors very rare.
Nevertheless, according to the International Neuroendocrine Cancer Alliance, the incidence of NETs is on the rise. Symptom awareness is the key to earlier diagnoses, which can in turn save lives. Almost half of NET patients, which includes carcinoid cancer patients, are initially misdiagnosed because the symptoms can mimic irritable bowel syndrome, gastritis, anxiety and asthma — some of which Lance was misdiagnosed with. The carcinoid cells can also produce large amounts of hormones and other potent chemicals, which cause other symptoms like hot red flushing of the face, diarrhea and asthma-like wheezing attacks. I don’t say this to alarm anyone. People who have been accurately diagnosed with these conditions should not assume they have cancer. Like with any condition or illness, talking to health care providers is critical. The carcinoid cancer detection tests, including blood, urine and X-ray tests, can measure these hormones and chemicals – including serotonin, histamines, and chromogranin-A – that affect the body’s cardiovascular, gastrointestinal, pulmonary and other systems of the body. The longer it takes to get a proper diagnosis – and it takes five to seven years on average – the more time NETs have to spread throughout the body. Only when you get a proper diagnosis can you begin to discuss and plan treatment options with your doctor.
To learn more about carcinoid cancer and neuroendocrine tumors, I urge you to explore the Carcinoid Cancer Foundation’s website, carcinoid.org, and the International Neuroendocrine Cancer Alliance (INCA)’s website, incalliance.org. These resources are for patients, families and survivors. On Nov. 10, I honored Lance’s memory by recognizing NET Cancer Day. INCA is asking us to spread awareness on social media with the hashtags #LetsTalkAboutNETs and #NETCancerDay. The social media toolkit can be found at incalliance.org/ncd-2021/.
Also, having health care is critical for seeing doctors who study symptoms and order tests. On Nov. 1, Maine’s health care marketplace launched at CoverME.gov. Open enrollment runs through Jan. 15. I encourage you to compare plans and enroll in health insurance that meets your needs and works for you.
As always, I am honored to serve as your state senator. If you have questions or need assistance, please contact me at Donna.Bailey@legislature.maine.gov or (207) 287-1515.
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