On behalf of the Canadian MPN Research Foundation, CURE spoke with Dr. Shireen Sirhan, from the Jewish General Hospital-McGIll University, about finding a care team that specializes in MPNs.
Kristie L. Kahl: To start, why is important, in particular for MPN patients, to seek a specialist in their disease?
Dr. Shireen Sirhan: So MPNs are rare diseases, and although many hematologists in the community treat MPNs, there are certain centers that are more specialized. They have special clinics for patients with MPNs, with access to molecular testing clinical trials, multidisciplinary teams that can assess their needs. MPNs are complex, both to diagnose and to treat. So MPN specialists are the most up to date with current therapies, and they can help navigate this complexity of which drugs are best suited to each patient.
Kristie L. Kahl: With that, can you also discuss why it may be important to seek a second opinion?
Dr. Shireen Sirhan: It's important for patients to be comfortable with their MPN physician and a second opinion can sometimes offer them that reassurance. Also, patients who seek a second opinion with an MPN specialist can still be followed by their hematologist closer to home, and then what we call a shared care model, where they continue their regular follow up and have an occasional consultation with their MPN specialists in cases of, for example, disease status changes or new treatment recommendations.
Kristie L. Kahl: Do you have recommendations on how patients can find a specialist or a cancer center that specializes in MPNs?
Dr. Shireen Sirhan: I think that's very important to have such resources. So for example, in Canada, they can consult the Canadian MPN Group website. Also, patient advocacy groups tend to be very resourceful and finding such centers.
Kristie L. Kahl: What kind of questions can they ask their provider to ensure they are seeing someone who specializes in MPNs?
Dr. Shireen Sirhan: I'm not sure if there are specific questions to ask if your doctor specializes in MPN. But I think it's very important to ask about what are the available treatment options that your physician is familiar with? Is there a potential access to novel therapies in the form of clinical trials?
Kristie L. Kahl: Following an MPN diagnosis, what would you say is your biggest piece of advice for patients in the next step of their journey?
Dr. Shireen Sirhan: A diagnosis at the beginning is difficult. So the first thing I tell my patients is take a deep breath. MPNs are chronic cancers. And the first thing that patients need to do is take the time to adjust to this diagnosis. It is absolutely normal to feel overwhelmed by the diagnosis and potential treatment options. And the patients need to understand that they do not need to make all of their treatment decisions on day one. So, to take their time, adjust and learn about their disease and then address the next steps in their journey.