Blog, book keep Sunny's spirits up
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Sunny Carney, who has a rare form of cancer, at her Plum home.
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Since she was diagnosed with carcinoid, a rare and incurable cancer, in May 2008, Alicia "Sunny" Carney of Plum, 38, has become the subject of several news stories.
This mother of three also maintains a blog, and she recently completed a book about her experiences -- all, she says, in an effort to raise awareness of her disease and give hope to those who have it.
Her efforts, along with the efforts of others, may be working. Carcinoid diagnoses have risen markedly over the past few years, raising the profile of the disease.
Some of the upswing in carcinoid diagnosis may be attributed to rising rates of the disease. But medical opinions differ on this, and doctors who work with carcinoid attribute at least some of the increase to growing awareness.
Carcinoid is a cancer of the endocrine system, a subset of a larger group of cancers called the "neuroendocrine tumors," or NETS. NETS account for about 11,000 new cases of cancer a year, most of them carcinoid.
Carcinoid often starts in the digestive tract before moving to other organs and bones. It also can begin in the ovaries or testes, the lungs or pancreas.
Currently, unless the tumors are removed before they start to spread, there is no cure.
Treatments are aimed at slowing the advance of the disease and counteracting the overproduction of chemicals that can cause symptoms ranging from diarrhea and facial flushing to heart valve lesions and trouble breathing.
Mrs. Carney has had an ovary and most of one lung removed, and has tumors in her liver, bones and remaining lung, making her cancer Stage IV.
Although her prognosis remains dire, she noted she has lived far longer than some of her doctors predicted.
She also said she, her husband, Mark, and their three sons, Austen, 14, Logan, 13, and Nolan, 12, are encouraged that doctors and lay people seem to know more about carcinoid than they did when she was diagnosed 2 1/2 years ago.
"There's a ton more awareness now," she said.
She added that when she underwent an octreotide scan, which helps to diagnose carcinoid, the technician who performed it "said he only did two or three a year. Now they tell me they do several a month."
This is important for a disease like carcinoid, she said, because its symptoms make it easy for doctors to misdiagnose. More than 90 percent of carcinoid patients are initially misdiagnosed, and it takes the average carcinoid patient five years to receive the correct diagnosis.
First Published September 23, 2010 6:37 am
