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It Can Take a Village to Treat MF


Bart Scott, MD, has had a close relationship with cancer nearly his whole life. During high school, he was inspired to pursue a career in medicine when his mother was diagnosed with breast cancer. Years later, in his second year of medical school, he, too, received a cancer diagnosis—Hodgkin’s lymphoma. Now, Dr. Scott lives disease-free and works as Clinical Director of MDS/MPN and Myeloid Malignancies at the Seattle Cancer Care Alliance.

Written by Kristin Bundy for Scroll Health Studio

nowing cancer on a first-name basis has shaped the way he treats patients—both medically and personally. “Going through something like that, I’ve come to appreciate the importance of good communication,” he says. “I try to help patients understand the disease and encourage them to be in control of their own decision-making process.”

And when you’re dealing with a complex, unpredictable disease like myelofibrosis (MF), that understanding is not easy to come by for patients and caregivers. Or even for the community hematologists-oncologists who see those patients first.

“Oncology is so complex, community physicians can’t know it all. While they adroitly manage hundreds of cases of more prolific cancers, like breast, colon, and prostate, they usually see only a few patients with myelofibrosis each year.”
— Bart Scott, MD

It is precisely because MF is such a rare, heterogeneous disease that hematologists-oncologists across the world partner with members of a small network of rare blood cancer specialists, known as MPN specialists, like Dr. Scott. MPN specialists are closer to the research (i.e. they know what clinical trials are recruiting and what potential therapies are being investigated) and simply see more patients annually—usually around 300 at any given time. Drawing from this brain trust creates an opportunity for patients with MF to receive more comprehensive, patient-centered care, and an opportunity for local hematologists-oncologists to do everything they can for their MF patients.

“We all want the same thing,” says Dr. Scott, “which is for patients to have a good quality of life and a prolonged survival as long as possible. There’s a myriad of treatment options that would be available to them that would require interaction with a specialty center.”

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The Specialist’s Specialist

r. Scott typically interacts with referring physicians in one of two ways. He may field a single call with a hematologist-oncologist who has a specific question about a case. But more often, Dr. Scott plays an ongoing role as MPN specialist on a multidisciplinary team with the community doctor and their patient. This is what is called a co-treatment team.

“But creating an effective co-treatment team between hematologists-oncologists and MPN specialists doesn’t happen without a mutual sense of trust and respect—and a desire to do the most for patients living with MF,” says Frank Senecal, MD, medical oncologist in Tacoma, WA.

Discover pathways beyond JAK-STAT:

He and Dr. Scott have developed these qualities working together over the past 10 years. In fact, calling Dr. Scott is almost an automatic response for Dr. Senecal nowadays.

“If I diagnose a patient with MF, I immediately contact Bart for consultation.”

Since the two physicians practice miles away, they stay in touch via e-mail, shared EMR, and the good old-fashioned telephone—decidedly embracing “telemedicine” before the word was coined.

“He sees scores of patients with MF every year and actively conducts research at Fred Hutch. That experience and insight from around the world is priceless,” says Dr. Senecal. “I focus on oncology and hematology, and with Dr. Scott, patients feel reassured that they have the attention of another expert.”

Making the crucial connection

r. Scott goes out of his way to welcome all members of the co-treatment team into the conversation. “This isn’t about me, “ he says. “This is about focusing on establishing open lines of communication from the beginning.”

And that includes the patient. Dr. Scott knows the sense of overwhelm that comes with a diagnosis of myelofibrosis. He takes the time to try to explain the disease in a way that they and their caregivers can grasp and emphasizes that they are in control of their care.

“I always say to patients, ‘You’re in charge, I’m your advisor.’ I give you information so that you can make the best decision for yourself.”

And the same applies to the physicians Dr. Scott works with—physicians like Dr. Senecal. With referring physicians, he explicitly defines his role as consultant, so as not to disrupt the hard-won alliances built among existing doctor-patient relationships. His goal, in addition to providing expertise, is to build strong partnerships with community hematologists-oncologists and support patients to stay with their local physician, because in a tug-of-war between experts, the patient always loses.  

“We’re doing this together.”

During co-treatment team meetings, Dr. Scott pulls from his experience as a cancer survivor to encourage good communication between himself and those on the other side of the zoom call. His main goal is to listen and let the local physician and patient take the lead. “I’m really just a facilitator of the discussion,” says Dr. Scott. “Sure, I bring my knowledge and experience in MF to the table. But at the end of the day, it is a group decision.”

“I always say to patients, ‘You’re in charge, I’m your advisor.’ I give you information so that you can make the best decision for yourself.”
— Bart Scott, MD

Dr. Scott devotes three quarters of his practice to consulting with co-treatment teams across Washington, Wyoming, Alaska, Montana, and Idaho—the catchment area for University of Washington Medical Center. He also consults with patients and physicians around the country and the globe. He has patients in Texas, South Carolina, and Michigan and about a dozen patients from as far away as China, Japan, England, Australia, and India.“I think patients with MF benefit by seeing an MPN specialist because it’s impossible for referring physicians to be acquainted with every type of cancer,” says Dr. Scott. “My specialty is niched—I focus on bone marrow failure disorders, MPNs, and MDS, and I’m familiar with the literature.”

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The Nature of the Beast

he challenges of treating myelofibrosis are even more challenging within the setting of the community physician, who may only see 1 to 4 MF patients a year. For many, diagnosis and treatment are a matter of managing patient expectations with a straightforward singular approach: delaying the inevitable. 

“MF is a challenging condition to manage, and there are few, if any, textbook cases,” Dr. Senecal explains. “But, together, we can always find a way to move forward in a meaningful way. You want patients to know there is always hope, but ensure they’re not chasing dreams.”

Understanding primary and secondary MF:

Dr. Senecal’s panoramic experience as a physician at the Fred Hutchison Cancer Research Center and now at a large hospital system in Tacoma, has kept him from becoming an isolated community physician. “You don’t want your MF patients to miss opportunities of new research or important clinical trials, “ Dr. Senecal points out. “A patient can be a perfect candidate, but if you don’t know what’s available, or you don’t reach out to an MF specialist who knows what’s going on, they could be too late or miss it altogether.”

A better second chance

ost opportunity is somewhat a thing of the past when collaborating within the context of a co-treatment team. “I can’t spend the time necessary to pour through all of the latest myelofibrosis literature like an MF specialist, so it makes sense to reach out,” Dr. Senecal says. “Especially when the answer from an expert in the field is a phone call away.” And what’s more, this relationship opens up the potential for both physician and patient to learn so much more about the disease and how best to manage it.

"It’s an amazing benefit to both you and your patients. There’s nothing quite like collaborating with another physician."
— Dr. Senecal

“There’s just so much you don’t know you don’t know, “ Dr. Senecal explains. Patients begin to understand the nuances of their disease, and physicians can make better informed decisions. “It’s an amazing benefit to both you and your patients. Collaboration is simply a better way to practice medicine in these rare diseases.”

The scientific insider

xperts like Dr. Scott pull from their own research on MF and dive deep into the latest data to guide hematologists-oncologists and their patients through management options.

They take into account a myriad of factors that impact patient care—biologic differences, rate of disease progression, presence or absence of cytopenias, transfusion dependence, symptom burden, antecedent disease, and prognostic risk. Even more prominent these days are the emerging data on the type and number of mutations detected, allele burden, and the various pathophysiologic pathways that drive disease.

“I think we are transitioning away from a sole morphologic interpretation of the disease, into more of a complex look at the underlying genetic underpinnings of the disease,” says Dr. Scott. “It is precisely because of the enormous complexity of MF, and its rarity, that collaboration between MPN specialists and community physicians is so critical.”

“Some cases are more ideal for consultation and co-treatment scenario than others.”

“Those of us who are closely interrogating the literature and conducting the research will be better able to help guide care. We can help differentiate between the two types of MF and offer the most current interventions to physicians and patients.”

Dr. Scott categorizes the two types of MF by cellular production profile. One type is more proliferative in nature, with high blood counts, more pronounced splenomegaly, and a single JAK2 mutation. These patients tend to require cytoreductive management.
But there are even more patients who present with myelodepletive symptoms: marrow failure, multiple mutations, and cytopenias that require blood transfusions. These patients, says Dr. Scott, don’t need cytoreductive management as much as they need hematopoietic improvement.

“Problem is, right now, we don’t have a lot of ways to improve hematopoiesis that are effective for these patients. That’s why these patients are so much more difficult to manage.”

The next breakthrough for those cytopenic MF patients will come from collaborations like Dr. Scott’s and Dr. Senecal’s; experts working with community physicians and their patients to surround the disease, revealing even greater insights and investigating potential pathways and future treatments.

“Don’t be afraid to reach out,” Dr. Senecal counsels. “The treatment of myelofibrosis is advancing. It’s not standing still. And what you don’t know might be a missed opportunity for one of your patients.”