How bad could it be if they call it “the good-looking cancer?” Potentially, very bad.
That’s what Dana Test, a lifelong St. Clair Shores resident, learned after being diagnosed with carcinoid cancer 10 years ago at age 31. Like others with the condition, Dana often looks and feels fine. “It’s hard to wrap my head around it,” she says. “I feel so great, and then I have a scan, and it’s really crappy.”
What are carcinoid tumors, and why are they so dangerous?
- They are difficult to diagnose
- Symptoms are vague, such as diarrhea, stomach pain and facial flushing
- Carcinoid tumors grow slowly but can be fatal if untreated
Dana’s first symptom was pain in her tailbone after exercise. The ache was enough to bring tears to her eyes, but an X-ray found nothing unusual.
“I just felt like something wasn’t right,” she says. A visit to a colon specialist in Michigan led to another “you’re fine” test result. Just to be safe, though, the doctor ordered a CT scan. The results of the scan found a tumor on Dana’s tailbone - and more on her liver and adrenal gland. “We sat there, my stepdad and me. It seemed so surreal I couldn’t even cry,” she says. To pinpoint the cause of the tumors, Dana had to spend three weeks at the Mayo Clinic before being correctly diagnosed.
When the going gets tough …
With her carcinoid cancer diagnosis in hand, Dana felt her life was over. But at that point, she didn’t know just how tough she was, how determined she was – and how loved she was. She also didn’t realize the life she could build, including falling in love and becoming a registered nurse while living with cancer and its punishing treatments.
Over the next four years, Dana endured five surgeries, one lasting more than 17 hours. Even so, the disease remains within her.
“I will always have the tumors,” she says. “There’s no remission.”
Dana’s initial trip to the Mayo Clinic was the first of many for medical treatments, including stints in Switzerland and Mexico. Experts based at Ochsner Hospital in Kenner, Louisiana – a suburb of New Orleans – oversee her care.
Dana says she also has “an awesome oncologist” at Henry Ford Hospital, Dr. Ira Wollner, who helps follow her care locally. Every three months, Dana as an MRI scan. If it shows the tumors moving or acting up, she says, they have to be treated. The various procedures can cause their own problems, too.
After doctors administered chemotherapy directly into Dana’s liver last year, for example, she developed an infection that led to sepsis, a life-threatening condition in which the bloodstream essentially is poisoned. “It’s a very scary thing,” Dana says.
Never giving up
Despite her experiences, Dana wasn’t ready to give up on her dream to become a nurse. But just before she was to begin Baker College’s nursing program, she needed immediate oral chemotherapy. Dana considered giving up her seat in the competitive program, but her mother encouraged her to stay. She forged ahead, entering nursing school in April 2014.
Combining classes and chemo wasn’t so bad – except for the exhaustion. One term, she was sick and had a fever as she prepped for finals. Still, a classmate refused to let Dana sleep until she answered all the review questions.
Dana's support system allowed her to successfully graduate from nursing school. “It was the biggest accomplishment in my life,” she says.
The people close to her got even closer
“School was not easy for me, but I have a crazy, crazy passion for becoming a nurse,” Dana says. “There are so many reasons I made it through – from my own strength, but also so many people carried me.”
That includes her boyfriend, Brien Baker, who packed her lunches and celebrated the start of every term with a “first day of school” photo. They had been friends for a dozen years before their relationship turned romantic three years ago. He knew she had cancer, but Dana had downplayed its seriousness to him – and to nearly everybody else. “I just wanted to be normal,” she says.
About six months into their relationship, when a troubling scan result came back, Dana tried to end their relationship, feeling Brien deserved more. His reply: “You’re not getting rid of me.”
During the last couple of school terms and since graduating, Dana has worked as a patient care tech at St. John Providence Hospital in Detroit.
“I became a nurse at this age to take care of people, and I feel I touched a lot of people in those situations,” she says. “I really do put myself in their shoes. What’s hard is when I start to question: Am I really going to be OK? Am I going to be able to work as an RN?”
Of course, she doesn’t know. Her doctors don’t know. None of us knows our fate.
“Live in the moment, and enjoy the day you’re given,” Dana advises. “What gets me through it is my support system and my faith.”
Dana says she used to worry constantly and was easily irritated.
“I used to beg God, ‘Please,’” she says. “Now my prayers have turned more into gratitude: ‘Thank you for this day.’”
Why do advocates for carcinoid cancer sport zebra stripes?
There’s a saying in medicine: “When you hear hoofbeats, don’t only think horses – think zebras, too. In other words, think outside of the box.”
If a patient has common symptoms, that doesn’t mean it's something ordinary. It could be something not expected. Something uncommon should always be considered. Dana says wearing stripes is a reminder that sometimes a condition really is a zebra.
To learn more about carcinoid cancer types and treatment options, visit The Mayo Clinic