Seeking a Second Opinion? Here’s How to Prepare and What to Expect

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Topics include: Treatments and Understanding

Many MPN patients consider getting a second opinion to confirm their diagnosis, seek out different testing, or bring to light all treatment choices available. MPN expert Dr. Abdulraheem Yacoub helps guide patients by sharing what to expect and what questions to ask to make the most of the appointment, and feel more confident when gathering information about their condition. Watch to learn his expert opinion on the value of this option.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Beth Kart Probert:

What are some of the things that a new patient or someone who feels they need to get a second opinion or wants to transition to a new specialist? Could you give us an example of some questions we should be asking the potential new specialist so we start off that relationship on a good note?

Dr. Yacoub:         

So getting a second opinion is an absolutely integral part of what we do in this modern field of medicine. A lot of the information that we know is actually public access and can be read by any patients with average education. A lot of this medical literature is available with different reader-friendly versions. So a lot of patients can go in and read that. But there’s also a lot of misinformation online. And a lot of that where patients try to get reassurance, they actually get a lot of confusion. So it is important to seek a second opinion that is informative and educational. And it’s always a good idea to run that by your doctor who would you think is a good second opinion?

And a doctor who doesn’t like you to get a second opinion is probably not keeping your best interests in his mind. But it’s something we all encourage that we should get to hear the same story from two different people at least.

I’ve had more than I can’t remember of patients that I’ve sent to Dr. Verstovsek over the years. So this is just part of what we do as we all have a limit or we could use somebody else’s help. It is a proven benefit that patients who take charge of their health, they do better than patients who don’t take charge of their health. So, you being involved, seeking help, reading, be aware of your health is of absolute importance to you having a better outcome. So a lot of the questions that you always have to debate, and even us, in regards of how sure we are of your general outlook or general health, we always question ourselves as physicians do I have the right diagnosis. Do I have the right tests done?

And have I informed you with the best treatment out there? And those would be the same questions you would carry from doctor to the next doctor. So, as we’ve had multiple stories today, you could have a diagnosis that could change. That doesn’t mean your first diagnosis was not correct. It could have not been correct. But it could have changed. So both options are possible. And as you seek a second opinion that would be the first question, what is my diagnosis. How would you classify me into which—sometimes, you are in between two diseases. So, sometimes, it is not clear. And you might have two doctors who disagree but because you are in that gray zone between two diseases.

So that is always an important question to ask. Another question to ask is what other tools that are available to predict the future that can be offered? So, at each institution, it’s very diverse.

And different institutions in the country have different prognostic tools. They have different sequencing methods. They have different maturation mutational analysis. They have whole genome sequencing. Some of them are research. Some of them are commercial. So, as you seek a second opinion, you might ask about what does that institution offer as a tool to help you predict your future better. And we do have those tools at different institutions. They’re just different. And it would be great if they agree. Then, you have twice as sure of the information you have. 

And you always have to ask the physicians about the tools that they have to help you and what other treatments they would offer, and the doctors might agree or disagree. But that’s a very healthy behavior. Physicians don’t always agree, but, sometimes, they do. And that would be great if the doctors agree on what your doctors are doing. 

But if they disagree, that’s a healthy phenomenon. And you do want to hear from your referring physicians about what is it that they would do differently, and what else they would offer you as a research option tool. So these are the questions that should carry with you wherever you go.

Beth Kart Probert:           

Dr. V, I’d like to ask you how important is it that MPN patients should be seeing a specialist? 

Dr. Verstovsek: 

I was just thinking about this issue, because of the rarity of the disease and individual experiences like we have here.

There is no better example here at this panel what transpired through life of our patients and our own experiences where we communicate to each other, even when we have experience. And experience in managing patients with MPN certainly counts. It’s not easy. Many times, there are problems that you cannot resolve, and we communicate to each other. And patients cannot always follow with you and have to have a local doctor. So as we were talking about the team that would carry about you, and you participate in that, it’s also important that not just find a second opinion but also, perhaps, connect your local doctor wherever you are to a doctor who will have a huge experience in your particular disease so that the two can communicate. 

You have a second opinion. You can feel comfortable. You can seek help, if necessary, from the expert who does MPN only and nothing else but yet feel comfortable with your local doctor that the local doctor is involved, to the degree possible, and is amenable to communication with somebody else.

I second what Dr. Yacoub said, and this is very rare, but limiting patients in allowing them to seek second opinions is somewhat counterproductive and hard to understand. We are all here to communicate and help the best way possible. So team effort between the doctors is needed, too.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on January 11, 2018