Multidisciplinary care: Preparing patients for treatment and beyond
For Jim Stinehour, the support of his wife Judy, family and friends helped keep him motivated during his intense treatment and recovery.
For Jim Stinehour, the days following his diagnosis with advanced head and neck cancer in 2013 were overwhelming. The retired estimator from Brighton needed to have surgery to remove his voicebox and lymph nodes, then reconstruction. He was facing four weeks of daily radiation, four weekly chemotherapy treatments and an intense, long-term recovery.
“When something like this happens, it’s like being hit by a freight train,” Stinehour recalls.
As he and his family grappled with this news, a large team at Wilmot Cancer Institute — including experts in pathology, radiology, surgery, dentistry, speech pathology, nutrition and occupational therapy — began the elaborate choreography of planning and coordinating his care.
This multidisciplinary approach is central to Wilmot’s philosophy and part of what differentiates Wilmot from other providers in upstate New York. But multidisciplinary care is much more than just having a large team that works well together. It’s about scientific interaction, looking at the pros and cons of treatment decisions from all angles, holding each other to the highest standards possible, and considering the patient’s goals and preferences — particularly in cases where the cancer is very rare or very complex.
“It gives patients the broadest perspective on their therapy, and it brings so much expertise into the process,” says Paul van der Sloot, M.D., who coordinated Stinehour’s care at Wilmot’s Comprehensive Head & Neck Cancers Clinic. “It’s not just how best to treat their cancer. It’s also about how to get them through treatment and what comes after.”
Communication and consensus
At Wilmot, this process often begins with a weekly meeting called a tumor board review or multidisciplinary conference. In a large conference room, experts from pathology, radiology, surgery, medical oncology and radiation oncology gather to review patients’ cases. Magnified images of biopsied cells stained pink and purple are projected on three large screens, and the conversation begins.
The oncologists clarify the diagnosis, and images from PET and CT scans replace the cells on the screens. The group assesses the tumor’s location and the possibilities for surgery, radiation and chemotherapy. They discuss each patient’s preferences and goals, emotional state, family situation and overall health. Their conversation is dominated by the long-term implications for the patient’s quality of life, the risk of recurrence and possibilities for future therapy. They debate, question each other and provide evidence for pursuing one treatment over another.
“There are all kinds of things that go into decision-making,” says radiation oncologist Alan Katz, M.D., adding that each of these factors can influence not just the recommendations for treatment but how treatment is delivered.
With more options for combining surgery, radiation, chemotherapy and other therapies than ever before, treating cancer has become more effective, but also more complex. Even if the type, stage and location of their cancer are the same, nearly every patient will have a personalized plan that might involve very diverse approaches and a large team of people with diverse perspectives to weigh in.
“Twenty years ago, we had a few drugs that were mixed and matched for all tumors, often with poor response rates,” says Jonathan W. Friedberg, M.D., M.M.Sc., director of Wilmot Cancer Institute. “Today, with precision medicine, we understand that tumors are different, and different approaches are needed.”
Treating cancer today requires deep and diverse expertise, and a multidisciplinary approach coordinates the perspectives of every provider who could have a role in a patient’s care. It helps to ensure the quality and timeliness of treatment, as well as improve survivorship.
In addition, this approach presents opportunities to consider whether patients might be eligible to participate in a clinical trial. Wilmot has a large portfolio of research studies testing new therapies, many of which are not available anywhere else in the region, and they present another treatment option for patients who have advanced or complex cancers.
Multidisciplinary care can also advance research by opening the door to new questions for scientists and clinical investigators to pursue. “Several research topics have emerged from case discussions at our lymphoma conference over the years,” Friedberg says. “It is how we are constantly moving the field forward.”
The conversations that begin at tumor board meetings continue throughout a patient’s treatment — often picking up in the large central workrooms of Wilmot Cancer Center’s clinic which were designed to encourage interaction and collaboration. That proximity allows doctors and nurses to consult each other on questions or unexpected issues, making the process seamless for patients.
“It’s not on the patient to call and find out, and we’re not running around trying to get information while the patients are waiting,” Katz says. “In the background, we’re coordinating it all so the patients don’t have to.”
Preparing patients for the future
More than a dozen head and neck cancer specialists have been involved in Stinehour’s treatment and recovery. Yet with every appointment, Stinehour had the sense that whoever he’d seen first had spoken to the next person and filled them in.
“So many functions are involved in head and neck cancers — voice, swallowing, important cosmetic issues, chewing, hearing,” van der Sloot says. “It really takes a village.”
Multidisciplinary teams like Wilmot’s Head & Neck clinic physically bring that village together, locating specialists in a single place for patients and coordinating appointment schedules.
“A lot of patients come from hours away, and this guarantees that they get the service they need without having to come back multiple times,” says speech pathologist Catherine Sligar, MA, CCC-SLP.
In the Head & Neck clinic, the teamwork begins before a patient’s case is presented at the tumor board review and can continue for years after treatment. Patients are connected with the clinic’s speech pathologist and dietitian often before their treatment even begins to help prepare them for what’s ahead. “We want them to be educated and start with exercises from day one,” Sligar says. “We want them to be prepared before surgery.”
For Sligar and dietitian Joanna Lipp, RD, CNSC, CSO, that preparation is really about ensuring patients’ long-term well-being. They try to anticipate patients’ needs and plan visits around appointments that patients already have scheduled.
“We’re focused on quality of life from the get-go,” Lipp says. “Getting through treatment is just a small part of what we do.”
They help with many behind-the-scenes, non-clinical issues such as coordinating with insurance companies and helping patients plan for travel with special equipment or supplies. They also provide an understanding environment for patients who undergo procedures that can drastically alter their appearance. “When you’re going through an event as traumatic and life-changing as cancer, you want to feel confident and secure in your team,” Sligar says. “This provides an environment where patients can feel that way.”
Essential expertise for rare cancer
For Susan Mathew of Brighton, having a trusted team with the right expertise was essential. She was diagnosed in 2014 with an extremely rare form of liver cancer. She’d had no symptoms, and the mass on her liver was discovered in a scan she’d had for unrelated stomach pain. At first, doctors didn’t think it was malignant, but it continued to grow. Six months later, she had a complex surgery to remove it, along with large portions of her liver and other tissue. Because Mathew’s cancer was so rare, there were no widely accepted approaches for treatment beyond surgery. Her case was presented at Wilmot’s gastrointestinal cancers tumor board, where her surgeon Luke Schoeniger, M.D., medical oncologist Aram Hezel, M.D., and radiation oncologist Alan Katz, M.D., began working on a recommendation for treatment.
The three focus, or sub-specialize, in gastrointestinal cancers, which deepens their knowledge of and experience with these diseases. As a result, they see many liver cancer cases each year and have an overlapping understanding of each other’s expertise, which is crucial for evaluating complex cases.
“It’s rare to have an alignment of specific specialty care — a medical oncologist in gastrointestinal cancers, a radiation oncologist in gastrointestinal cancers and a surgeon with expertise in these cancers,” Hezel says. “That’s really what makes a truly high-functioning multidisciplinary team.”
Together, they discussed what Mathew’s surgery had entailed and their areas of concern. They also debated the timing and dose of radiation and chemotherapy — an important conversation because newer chemotherapy drugs are often too toxic to give with radiation.
“All treatments have the potential for significant toxicity and have to be given at the right time to have the most benefit,” Katz says. “It’s almost like a ballet.” Hezel then presented the treatment options and the team’s recommendation to Mathew.
At the same time, Mathew and her family sought a second opinion on her treatment in Boston. The oncologists there knew Wilmot’s team and that they had strong expertise in treating liver cancers.
“They said, ‘You are in good hands. Don’t worry,’” says Mathew, who then underwent four months of chemotherapy and five weeks of radiation at Wilmot.
The teamwork wasn’t limited to her treatment planning. Mathew was impressed by the way the nurses double-checked each other in the infusion center and by the way her team worked together to ensure that she could travel during her treatment for important family events.
“A lot of people are involved,” she says, recalling the collaboration she saw among her nurses and doctors. “It’s not a one-person thing.”
Even with such a large care team, Mathew has still been able to develop a strong relationship with Hezel, who coordinates much of her care.
“His smile lets me know that everything is normal,” she says. “He takes the tension out of things, and he is always asking if there’s anything I need.”
More than medicine
Social and emotional support is also an important aspect of multidisciplinary care. “You can’t let sympathy consume you,” Stinehour says. “It’s very easy to do because everyone is feeling sorry for you.”
He joined the local chapter of Support for People with Oral, Head and Neck Cancer (SPOHNC), which meets monthly at Wilmot Cancer Center. He attended the group’s spring banquet shortly after his surgery — at a time when he couldn’t speak or eat. There, he met others who had undergone similar treatment and gained insight from their experiences.
He’s continued to stay active with the group, and Stinehour, who loves to bake, has joined Wilmot’s monthly Cooking for Wellness classes, held at Gilda’s Club Rochester.
The support of his family, friends and church has helped keep him motivated. Since his treatment ended, Stinehour and his wife Judy have been to Ireland and Germany, and they toured the National Parks out west. He regularly volunteers at his church, and he’s looking to help others with head and neck cancers prepare for treatment.
For Mathew, the support of family and friends also kept her spirits up.
“I had a lot of prayers from around the world,” she says. Friends and neighbors would bring meals, and her husband and daughter made sure she ate well and kept her weight and strength up. Even before she finished treatment, she went back to the gym for brief stints, and now she’s doing full Zumba classes. She is playing with her 11-month-old granddaughter, and she’s traveling to India.
Attitude, she says, makes a big difference from the start, but so has being actively involved in decisions about her care.
“Be your own advocate and do your homework,” Mathew says. “Find the best treatment for you."
Molly Miles |