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Louis Spino was still recovering from open-heart surgery in 2005 when his buddy asked him why
his eyes were yellow. A CT scan confirmed that Spino, then 80, had pancreatic cancer.
A local oncologist told Spino he needed to go somewhere where they see a lot of cases like his. So
Spino's five daughters kicked into gear. They opened a third volume in a series of binders they were keeping
about their father’s health: Dad’s Recovery Notes.
"We sat down that day and started calling people," said Margie Spino, who lives a block away from her
father in Toledo, Ohio. "We weren’t shy."
The Spinos talked to the nation's leading pancreatic cancer specialists at cancer centers in Chicago, Baltimore,
Houston and Ann Arbor. Each offered opinions. The centers in Baltimore and Houston were eliminated first,
given the distance. The decision came down to Lurie Comprehensive Cancer Center of Northwestern University
and U-M. U-M recommended chemotherapy and radiation followed by surgery; Northwestern recommended
surgery first.
As medicine advances, patients with all types of cancer are presented with more options for treatment.
But sorting through those options and deciding what's best can be confusing and intimidating.
Human beings are not always great decision-makers," said Peter Ubel, M.D., a Cancer Center researcher with
the U-M Center for Behavioral and Decision Sciences and Medicine. "The best decisions are made when a patient
and clinician together figure out what a patient cares about, and when there's more than one option, what fits
that patient best."
For Louis Spino, he wanted to treat the cancer aggressively.
"Regardless of what happened, I figured I'd do the best I can," he said.
The U-M Multidisciplinary Pancreatic Cancer Clinic -- which consists of specialists in several fields --
met to discuss Louis's case. He was clearly a candidate for a surgery called a "Whipple" -- and could have had
it immediately, as Northwestern had recommended.
But the procedure is complicated, lasting as long as five or six hours, said Diane Simeone, M.D., surgical
director of the Multidisciplinary Pancreatic Cancer Clinic. During a Whipple, surgeons remove tumors
located in the head of the pancreas, which is attached to several other critical organs, including the duodenum,
the bottom half of the bile duct, the gall bladder and the bottom third of the stomach.
To help give Louis more time to recover from his heart surgery two months earlier, the U-M team recommended
a clinical trial. Instead of having surgery immediately, Louis would have chemotherapy and radiation first to
keep the tumor at bay.
The best decisions are
made when a patient
and clinician together
figure out what a patient
cares about, and when
there's more than one
option, what fits that
patient best.
Research is ongoing to determine whether this approach is more effective than doing surgery first, said
Mark Zalupski, M.D., medical director of the Multidisciplinary Pancreatic Cancer Clinic. However, there's a
risk that a patient's cancer may spread before surgery; in those cases, researchers believe the cancer may be
so aggressive that surgery wouldn’t have benefited the patient anyway.
Ultimately, the Spino family chose the University of Michigan.
"It's so hard. You're lay people trying to make the best decision you can," Margie said. "How do you
make that decision? I think it came down to proximity. It seemed to make sense."
When there's more than one viable option for medical care, it's not always easy to identify the right choice, said
Ubel, who researches the best ways to communicate with patients. His team is looking at developing decision aids
that use different types of pictures and graphs to help clarify risks and benefits to patients.
It's important for patients to talk with doctors to make sure their priorities are understood so they can
develop the best plan for care together. It gets tricky, though. For example, Ubel studied perceptions of having
to live with a colostomy—a procedure that reroutes the intestine to an opening in the abdominal wall so that
stool is collected in a bag outside the body. People who had never had the procedure often believed a colostomy
would negatively impact quality of life more so than people who were actually living with a colostomy.
"Doctors know that patients with colostomies do pretty well, but sometimes things sound gross," Ubel
said. "That's when it's appropriate for a doctor to use a little bit of persuasion. We’re not just data dumpers."
With pancreatic cancer, Zalupski said, he doesn't feel a need to push patients in any direction because the
options are roughly equivalent. He presents treatment plans honestly and then answers questions.
Because pancreatic cancer can be very hard to control, patients often feel pressured to make decisions immediately,
said Janet Hampton, clinic coordinator. She helps patients talk through options and encourages them to
take time to think about their decision.
"Often times, people feel pushed by their diagnosis. They feel like they have to get going, they have to get
treatment," she said. "But you can take time to think about it. A few days or a week is not going to be critical
in changing the course of the disease."
For the Spinos, they had a different time concern: Louis's age. Louis, now 82, wanted to treat the cancer
aggressively. But his daughters ran into some ageism along the way.
Zalupski said fitness, rather than age, is more important in assessing options.
"It makes you feel so much better," said Cherie, another Spino daughter. "Some people gave us the feeling
that they couldn't believe we were putting Dad through this at that age."
Louis underwent surgery in August 2005, following a two-month regimen of chemotherapy and radiation.
After the Whipple, he had additional chemotherapy. Since finishing treatment in December 2005, he has been
disease free.
It's all there in the binders, the Spino daughters' meticulous notes about their father's health. Just after
Louis's diagnosis, the five sisters fretted over which clip art to choose for the cover -- something Margie and
Cherie laugh about now.
"That's what keeps me going," Louis said, gesturing to his daughters. "It ain't just medicine."
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