How to make the right medical decisions for you
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 fathers health: Dads 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 werent 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.
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 wouldnt 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."
'Best' vs. right and wrong
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 colostomya 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. Were not just data dumpers."
Whether you have prostate cancer and you're trying to decide between surgery and radiation, or you have breast cancer and youre trying to decide between a mastectomy and breast-conserving therapies, the same tips for making medical decisions apply.
Make sure your doctor understands where you're coming from. Talk to your doctor about what's most important to you.
Don't hesitate to get a second opinion. The Spino family continued to consult with a physician at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center even after they had ruled out traveling to Baltimore.
Seek out doctors who have treated many cases like yours. This ensures high levels of physician expertise as well as an environment prepared to deal with any complications that may arise.
Don't be shy about asking questions. Take notes or record conversations so you can go back to it later or share it with family members. Push for time. There's benefit in taking time to sleep on it. Even when you are not consciously thinking about issues, thoughts and opinions can mature and become clear.
Don't be afraid to change your mind. Melissa McKenna, a bladder cancer survivor, initially agreed to participate in a clinical trial, but decided on the way to an appointment that she didnt want to delay surgery. She told her doctor and rescheduled her operation for an earlier date.
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."
Living with the Decision
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."
Continue learning how to become an empowered patient
- Charting the Best Course
- The Engaged Patient
- Identifying a Doctor and Facility When You Have Cancer
- Diagnosis, Pause, Decision