Identifying Your Care Team
If you or someone you know has myelofibrosis (MF), getting the right care is key. MF symptoms can present and advance differently for everyone. Talk to your healthcare provider about any signs and symptoms you may be experiencing. Your healthcare provider can help refer you for the right testing and help you navigate potential treatment options. Dr. John Mascarenhas discusses some of the people who may be part of your care team below.
While your primary care physician or hematologist will often be taking the lead, it is common for your care team to include different specialists who are brought in based on your unique medical needs and symptom presentation. According to a poll of healthcare providers, 100% believe that collaboration across the extended oncology care team is essential.
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The Myelofibrosis Care Team with Dr. John Mascarenhas
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What makes up a myelofibrosis care team?
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Dr. John Mascarenhas, Hematologist Oncologist
DR. JOHN MASCARENHAS:
“The care team for a blood cancer like myelofibrosis will involve multiple key people, so in my mind, it really involves the medical assistants that check you in and do your vitals. And you know, that's often overlooked, I think, and underappreciated. That's the first person you meet often in a cancer center. Sometimes that is the most, that can be a very comforting person as you are brought in because it's frightening to be in a cancer center. It's frightening to be in a hematologist oncologist's office. The nurse, the nurse practitioners, they really do the bulk of the work, actually.”
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What role does a caregiver play in the work that the care team does?
DR. JOHN MASCARENHAS:
“The caregiver is actually an important part of the care team. So it's not simply the medical part of it. And of course, the patient is at the center of it. The caregiver actually is extremely important because it's often the caregiver that when they come to the appointment that hears a lot of the information that might be missed by the patient, that can then provide a recap of what was said when they get home. Sometimes the caregiver is the one who takes the notes. Sometimes the caregiver is the one who's just there to listen to the patient, to make sure the patient understood what was said. Of course, caregivers are often the people that the patient relies on for stuff that is important like getting to an appointment, getting to a transfusion, helping them with certain activities that might be hard if you don't feel well. So the caregivers can play a very important role from not just a physical helping but also an emotional aspect and a care aspect of helping understand, synthesize and discuss the diagnosis and the treatment to make it less overwhelming for that one individual.”
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Based on the varying symptoms and presentations of the disease, an MF care team is often made up of specialists, including, but not limited to:
Primary Doctor
A doctor who directly provides and/or coordinates a range of healthcare services for patients.
Hematologist
A doctor who has specialized training in the diagnosis and management of blood disorders.
Hematologist Oncologist
A doctor who has specialized training in diagnosing and treating cancers, specifically blood cancers.
Nurse Practitioner
A registered nurse who has additional expertise in diagnosing and treating disease.
Social Worker
A professional who is trained to talk with patients and their families regarding their emotional and/or physical needs.
When identifying the members of your care team, you may want to consider seeking out a hematologist who specializes in MPNs. You can find a list of these MPN specialists by state here.
Due to the symptoms you may experience, there are a variety of other specialists you may need to consult. These specialists may include but are not limited to:
Allergist/Immunologist
A doctor who diagnoses and treats immune system disorders, such as seasonal and food allergies.
Cardiologist
A doctor who diagnoses and treats diseases of the heart and blood vessels.
Dermatologist
A doctor who diagnoses and treats skin problems.
Geneticist
A doctor who specializes in diagnosing and treating genetic disorders and conditions.
Infectious Disease Doctor
A doctor who specializes in treating a wide range of infectious diseases that can often be challenging to diagnose.
Nephrologist
A doctor who diagnoses and treats kidney disease.
Neurologist
A doctor who diagnoses and treats disorders of the nervous system.
Orthopedist
A doctor who diagnoses and treats diseases of the bones, joints, tendons, ligaments, and muscles.
Psychiatrist
A doctor who prevents, diagnoses and treats mental, emotional and behavioral disorders.
Pulmonologist
A doctor who diagnoses and treats diseases of the lungs.
Surgeon
A doctor who is trained to operate on and repair parts of the body.
Arriving at a Diagnosis
