Nearly two years ago, Susan Nolt planned her own funeral, right down to the final graveside goodbye.
Susan Nolt (center) was diagnosed with carcinoid cancer in 2006. "Once in a while (the fear) creeps up
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Nearly two years ago, Susan Nolt planned her own funeral, right down to the final graveside goodbye.
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It still hasn't happened.
In fall 2006, Nolt was diagnosed with carcinoid cancer, a rare, puzzling illness that guarantees only an uncertain future.
One doctor gave her less than a year to live.
"I planned to die," Nolt says.
"You do what you have to do."
But long before that year ended, Nolt, a 65-year-old registered nurse, tossed out the morbid timeline in favor of a positive, active approach to whatever turns her life takes.
Carcinoid cancer causes a cluster of seemingly unrelated symptoms, from diarrhea to wheezing.
Because it's a little-known illness — sometimes even among physicians — diagnosis is often confirmed only after years of frustrating tests and theories.
The disease generally — but not always — progresses slowly and can take many different paths.
Some carcinoid patients die months after diagnosis. But for many, it's a chronic health condition managed through vigilant monitoring and treatment.
Nolt, of Mount Joy, shunned risky surgery and debilitating chemotherapy. Now she's reaching out to others with a new Lancaster carcinoid support group.
"Once in a while (the fear) creeps up on me," Nolt says.
"Other than that, you just live."
Less than a year
According to the nonprofit Carcinoid Cancer Foundation, more than 11,000 people are diagnosed with carcinoid cancer every year.
For Nolt, it began, unpleasantly enough, with chronic diarrhea, which hit several times a day for two years.
Nolt lost 40 pounds. Months of testing, including a colonoscopy, uncovered no explanation.
Around the same time, she saw a doctor for wheezing episodes and was diagnosed with asthma.
Nolt, then a consultant who traveled frequently, noticed her cheeks and chest would grow flushed just before giving a speech.
She figured she was just nervous.
In September 2006, Nolt landed in the hospital with a bowel obstruction. Doctors there discovered the source of her symptoms — three carcinoid tumors on her small intestine.
"I had never heard of (carcinoid)," Nolt says. "My nurse friends had never heard of it."
Nolt took in her grave prognosis, then updated her will.
A puzzling illness
Carcinoid cancer doesn't generate much research funding and typically gets lumped into the "other" category when it comes to statistics.
According to the CCF, it commonly originates in the gastrointestinal system, but also in other areas, including the pancreas and lungs.
The cancer's cause is unknown, and the subject of ongoing research.
Carcinoid tumors produce excessive amounts of hormones, triggering symptoms like Nolt's.
Since symptoms mimic everything from Crohn's disease to menopause, diagnosis can be challenging.
According to the foundation, 90 percent of patients are initially incorrectly diagnosed and treated. It takes the average patient more than five years to get the right diagnosis.
Early surgical removal of the original tumor can result in a cure, the CCF says. Regular follow-up monitoring determines if tumors have grown or spread to other areas of the body.
But due to delays in diagnosis, many patients aren't treated until after the cancer has spread.
Then treatment becomes more difficult, with no known cure.
Life goes on
Doctors removed two of Nolt's tumors. But she opted against removal of the third, a risky procedure that could result in the loss of her entire small intestine.
In her quest to learn more about her rare condition, Nolt found a carcinoid support group in Hershey.
Fellow patients cautioned her about chemotherapy, which made them extremely ill, with limited success.
The support group also provided sobering doses of reality.
"Some people ... died within months of diagnosis," Nolt says.
She decided on monthly injections of a drug called Sandostatin, which aims to shrink or slow the growth of tumors.
So far Nolt's tumor is stable, and the cancer has not spread. Sandostatin also controls her carcinoid symptoms, with few side effects.
Nolt retired after her diagnosis, but she doesn't do much sitting around.
She belongs to the Red Rose Toastmasters and the Happy Red Hatters and serves as a Stephen (lay) minister at Church of the Apostles United Church of Christ.
Most days Nolt feels good, if a little tired.
Weeds invade her flower beds more than she'd like. And she never misses an afternoon nap.
"A lot of friends keep me moving," she says.
"(But) there are days when I just want to stay home."
A celebration of life
On May 18, 100 friends and relatives gathered at Nolt's church for a special service.
One of her favorite inspirational quotes was printed in the program:
Life isn't about waiting for the storm to pass .... it's about learning to dance in the rain.
Friends shared favorite stories, and Nolt's fellow Red Hatters processed into the sanctuary, playing "When the Saints Come Marching In" on kazoos.
The service wasn't a funeral.
It marked two milestones Nolt didn't expect to see: 18 months with carcinoid cancer, and her 65th birthday.
CONTACT THE NEW ERA: mschweigert@LNPnews.com or 291-8757
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