Posts

Newly Diagnosed with an MPN? Start Here.

Newly Diagnosed with an MPN? Start Here. from Patient Empowerment Network on Vimeo.

If you’ve been diagnosed with an MPN, such as essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF), Dr. Ruben Mesa outlines key steps you should take, including a visit with an MPN specialist.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Diagnosed with an MPN? Why You Should Consider a Second Opinion

Ready to Start an MPN Treatment? What You Need to Consider

An Expert Summary of Current MPN Treatment Options


Transcript:

Dr. Ruben Mesa:

Patients who have a Myeloproliferative Neoplasm should consider seeing an MPN specialist at least at some frequency. The myeloproliferative neoplasms are not common illnesses. They’re not exceedingly rare, but they’re not common. And there is many nuances in terms of how we best diagnose the disease; the discussion we have with you regarding what are the treatment plans and goals, and then putting that plan into effect.

So, frequently, there’s a value in seeing someone who focuses on MPNs to help to establish that plan, and then frequently, there is a home physician, hematologist, or medical oncologist that works together along with the specialist in terms of managing the patient.

When patients first come for their visits related to an MPN, they have many questions. You know, they’re not common diseases, and people typically don’t have much experience with them. They’ve not had a family member that’s afflicted or someone at work. So, frequently, it comes on out of the blue. People will frequently, sometimes, go online and get a lot of information, but sometimes too much information; information that may or many not be appropriate for them.

So, there are many questions that are valuable, and I always advise patients to write down their questions ahead of time because sometimes in the heat of the moment, having a conversation, particularly with a new physician or provider, those questions may not, necessarily, be top of mind for them. So, we can go through those questions clearly.

I think key questions, I wouldn’t limit it to one key question, but I’d say I would put them in categories. 1.) Truly understanding the diagnosis; what’s the actual diagnosis that that patient has. 2.) What does the physician think are the risks that patient has? With each of the diseases, there are different risk classifications, and that will also help to give patients a frame of reference if they read other information about their disease online from highly reputable sources, or other educational sort of materials.

To understand, what is the recommended treatment plan. The plan may or may not included medications and understand what those medications are intended to do, and what their side effects may be, or what to anticipate.

It may or may not include aspirin, it may or may not include phlebotomy, or it may or may not include other therapies. So, understanding that diagnosis, understanding the risk, and understanding, what is the recommendation in terms of treatment.

Diagnosed With an MPN? Why You Should Consider a Second Opinion.

Diagnosed With an MPN? Why You Should Consider a Second Opinion. from Patient Empowerment Network on Vimeo

 Physician assistant Lindsey Lyle explains the importance of seeking a second opinion when diagnosed with an MPN.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Am I Meditating Correctly? Getting the Most out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Lindsey:

When a patient is initially diagnosed with an MPN, seeking a second opinion is generally a very good idea, especially if patients are perhaps in an area where they do not have access to academic medical center.

The reason is that MPNs are such a small percentage of blood cancers – and, blood cancers in and of themselves are very rare, so MPNs are very rare, and especially in rural places, physicians do not have access or experience so much with MPNs. So, especially in those scenarios, I always advise a second opinion.

However, even within the academic medicine world, for example, if a patient is referred to me by their primary care physician or our institution, we always offer patients to seek a second opinion. Really, this is to gather information and either encourage the patient because the recommendation is the same or also to perhaps have a different idea for treatment that may fit the goals of the patient better, and so, I’m always telling patients to seek second opinions.