How a Second Opinion Improved My Care: A Patient and Doctor Story

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. 

Susan Leclair:

Hi.  Joining us today for some small discussion is Dr. Brady Stein from the Lurie Cancer Center, and his patient Andi.  Andi was diagnosed 12 years ago with essential thrombocythemia, and she was seen by one hematologist for a number of years and then made a decision to change to see Dr. Stein.  Andi, take us back to that moment when you were first diagnosed.  How much of a surprise was it? 

Andi Malitz:

It was—it was a big surprise.  I had actually gone for just a regular checkup at my place of employment.  They had offered free biometric screening, so I took advantage of that. 

And the doctor did the blood tests and called me one afternoon and said, you know, I'm really concerned.  Your platelet counts are very high, and has anyone ever talked to you about essential thrombocythemia, and—you know, at work.  And I said, no, I really don't have any idea what you're talking about and almost asked what are platelets, but I knew what platelets were. 

I said no.  And he said, well, do you mind, you know, if I call your physician?  He goes, I actually know him.  So he did call my primary physician and sent me over there.  I think I went in within the next couple days.  They drew blood again and determined, you know, probably should go see a hematologist. 

So that's when I went—you know, I was kind of a little bit in a fog, because I didn't really know what was going on. But then once I kind of understood what was happening and then, you know, really started talking about the bone marrow biopsy and what this is and what we need to do, I really did start to kind of absorb it a little bit and understand it a little more. 

We didn't go into treatment right away.  I started with, you know, a baby aspirin regimen for I think probably about nine or 10 months, but my platelets kept rising pretty quickly, so I think they had gotten up to about 1.2 million, and then he had put me on hydroxy (Hydroxyurea). 

Susan Leclair:

And how did you find Dr. Stein?

Andi Malitz:

Well, now we're fast?forwarding many years, and I think there was a lot of complacency on my part just because my doctor was pretty complacent.  He was watching spikes in my platelets, which seemed to—just my own physiology apparently caused them to maintain a pretty high number, and he would just keep increasing hydroxy (Hydroxyurea).  I really wasn't feeling well, and I was feeling very fatigued, had a lot of mouth sores, just really not feeling well and actually had the opportunity to attend the Patient Power MPN event last year at the Robert Lurie Center that I had found out about through the MPN [Research] Foundation.  It was a town hall for patients, and Dr. Stein was one of the speakers. 

And it was a kind of a combination.  It was a light bulb that went on that there's a lot of information that I was not aware of.  And, number two, Dr. Stein talked about something that was very near and dear to me, and that was quality of life, and I felt that this was somebody that would really understand what I'm looking for in a physician and could be somebody that I can talk to and talk about some of the things that are bothering me, and again, not necessarily understanding if they were symptomatic of the disease and then later found out that they were more symptomatic of the high dosage of the hydroxy that I was on. 

Susan Leclair:

So, Dr. Stein, here comes this patient for the first time, you know.  She's got a history at least of essential thrombocythemia and some issues with it.  We'll just leave it at that.  What was your thought process?  What kind of testing? What questions did you ask her to approach this and develop a relationship with her? 

Dr. Stein:

So what we try to do is act as another set of eyes or a fresh set of eyes.  So what we were looking at was a disease that had been 11 years in the making, and so the questions we often ask at a second opinion visit or a new patient visit, one, do we agree with the diagnosis?  Two, do we need to send some other tests, and in this case since there had been a long passage of time between the diagnosis and when I was seeing Andi, there were new molecular genetic markers that we could send—so things that had been discovered in 2005, not discovered when Andi was diagnosed, so complementing the diagnosis and we think perhaps informative in terms of prognosis. 

The next question we ask, how are you doing with this disease?  Are there symptoms from the disease itself, or are there symptoms from the treatment of the disease? And if so, do we need to make some adjustments? 

So we spent a lot of time talking about that, and what we felt was perhaps some of the symptoms she was experiencing were due to the medication, and so we—we worked on a therapeutic strategy.  And when you've been on a medication for 11 years and the same strategy and told one school of thought, I think it's very difficult to make any kind of change. And I think that, you know, what I wanted Andi to do is think about the recommendations, to take a step back.  And we weren't going to do anything necessarily drastically, but it was a change in approach.  It was different than what she had been doing for the left number of years.  So that's how our visit went. 

Susan Leclair:

And how did you process this?  I mean, here you had been on step A for such a long time, how did you move through this situation?  And how do you feel today?  Are you glad with your decision, I guess? 

Andi Malitz:

Well, what's good is that I'm kind of a change agent myself, so I'm pretty able to jump and morph into situations.  It was interesting what Dr. Stein just said about letting me go and process the information.  

I did have difficulty at first, and Dr. Stein knows that I would either call or see him or email him with now, you're sure?  You're sure that my platelets should be this high?  You know, we set up where I would go monthly for a blood test, for a CBC, and I wasn't used to that protocol.  I wasn't used to, you know, having that kind of immediate gratification, if you will, of having a conversation pretty much almost in the same day sometimes when my test would can come back, and to say, you know what—and actually, surprisingly, watching my platelet count go up as we reduced my hydroxy even by one tablet a day, it was—it bothered me.  I was scared because I kept thinking, oh, I'm going to have a stroke.  I'm going to have a stroke, you know, my platelets are too high. 

And, again, Dr. Stein, you know, telling me and educating me that this is—we're looking at this, but we're also looking at all these other things that are in your CBC, and through these other tests, these genetic tests and these other types of tests that we did found out that, well, yes, I do have ET.  It was confirmed I have ET, however I have—if there is, I have a healthy ET.  My blood is a very healthy blood.  My blood is showing a very low propensity to clot, and therefore it's okay that my platelets are a little higher. 

So as the months have gone on and I've become more educated and more comfortable I do understand, and I'm absolutely thrilled that I made the change. 

Susan Leclair:

It almost sounds like she's setting you up for this next question, but in a lot of diseases people are encouraged to seek a second opinion.  In the myeloproliferatives, just how important is it to seek not only a second opinion but a second opinion from a specialist in MPNs? 

Dr. Stein:

Well, of course, I'm coming at this in a biased way, but I absolutely believe in sharing the care.  What we do here is my focus is entirely on MPNs.  I see other hematological conditions, but my clinical focus, my research focus is all on MPNs.  This is something I think about every single day, and I have that luxury at a place like this. 

And outside of an academic institution that's just not possible.  The hematologist/oncologist has to think about and remain very up to date about a number of different diseases.  So a typical day might be seeing a patient with a blood clot, pancreatic cancer, lung cancer, breast cancer, colon cancer, prostate cancer, anemia, so you can see that the breadth of conditions is great. 

So I get to focus on a small area, and I try to learn everything I can about a small area.  So that's I think the luxury that we have here, and I think that's the benefit a patient with a rare disease can have by having a shared approach.  Seeing someone that's close to their home, we understand that.  It's not always easy to get here, and some patients live close, there are other patients who don't have someone who focuses on MPNs near them.  But if you have a relationship, and even if we see each other once a year we can use that yearly visit to update one another, and I can share what's changing in the field.  Are there practice-changing clinical trials or diagnostic tests or issues of—aspects of prognosis?  So we can use that yearly visit to communicate those findings. 

But then we also have a team. And so if there's something changing about your course, I can help with you and your doctor, and we can troubleshoot together.  We may not always have the answers, but we can—we can try to brainstorm and come up with a strategy to change.  So I really do believe in a team approach. 

And we have the luxury here to think about this every single day, where a busy practice with a variety of illnesses, if you have one or two ET or PV or myelofibrosis patients in your whole panel, it's—you just can't stay up to date on everything that's changing. 

Susan Leclair:

So, Andi, if you had a couple of seconds with someone who was brand new to this diagnosis, do you have any words of wisdom for them?  What would be the first two or three things you would say to someone who looks at you and says, I have this disease I can't pronounce, they call it ET for short?  What would you say to them? 

Andi Malitz:

I think I would say, given the experience that I have is to, number one, really try to find a physician?partner who can be your partner, and find someone—and if not Dr. Stein find somebody like Dr. Stein who really focuses in on the MPN diseases. 

Because, really, going to a generalist in hematology/oncology, as Dr. Stein had said, I felt—and I would tell someone, too, that I felt like I was maybe his, you know, six?month comedic relief.  You know, I was the happy coming into his office.  He was seeing really sick people.  But I would also say don't—don't take for granted or overlook if you're not feeling well.  If you're tired—you know, in my case I was going through the mouth sores and, you know, some other things.  Make sure that you talk about those things immediately.  And don't go online and start playing, you know, doctor at home on the Internet game because, you know, you're either going to find things that aren't true—you're going to—if you have half a brain you'll find things that are true, but bring those things to your doctor right away. 

And if you're newly diagnosed talk about everything that's bothering you.  I didn't really know the spleen-ET connection before.  Luckily, I don't have that problem.  I certainly didn't know the tests that could be taking to talk about your propensity to clot.  Make sure you talk about that with your doctor. 

Susan Leclair:

Okay.  Thank you very much. 

Andi Malitz:

Thank you. 

Susan Leclair:

And thank you both for stopping by for this interview.  

Dr. Stein:

Thank you.  

Susan Leclair: 

Well, thank you very much for joining us on Patient Power today.  We hope you found it informative. 

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.