The Importance of Getting Second Opinion

Leigh Clark:    Hi, everyone. This is Podcasts for Patients with the Aplastic Anemia and MDS International Foundation. I'm Leigh Clark, Director of Patient Programs. Our podcast series is brought to you with special thanks to our generous patients, families, and caregivers, like you, and our corporate sponsors. Thank you to everyone for supporting this series. Today, we're going to be talking about the importance of getting a second opinion with Dr. Mikkael Sekeres, who was a professor of medicine and the chief of the Division of Hematology at the University of Miami Health System and Sylvester Comprehensive Cancer Center. Welcome, Dr. Sekeres.

Dr. Mikkael Sekeres:    Hi, how are you? Thank you so much for having me on this.

Leigh Clark:     We're delighted to have you today. How often do mistakes in diagnoses happen?

Dr. Mikkael Sekeres:    Well, uh, you know, this is something that was really surprising to me. Um, if you look across a number of different cancers, and of course, focus on diagnoses like myelodysplastic syndromes, acute leukemias, bone marrow failure conditions, um, but even if you look at, cancers like breast cancer, melanoma, and lung cancer, misdiagnoses happen almost 20% of the time. Now, some of these misdiagnoses aren't really major differences in a person's, um, cancer diagnosis and don't really affect their treatment. They're what I refer to the sorts of things that eggheads like me get excited about, because there's a subtlety in a difference in how to interpret, for example, a tissue biopsy or a bone marrow biopsy, but they really don't materially affect, a patient's experience in, their disease course or in the treatment that they receive. Um, for some cancers though, those differences in opinions about a diagnosis really do matter. So for example, there was a study that was conducted at Memorial Sloan Kettering Cancer Center in New York of over 700 patients with lymphoma who were referred for a second opinion. And there, about 17% received a major revision in their diagnosis that had the potential of altering treatment recommendations.

I want to focus on what's important to me and to you and to probably a lot of the people who are listening to this today, and that's myelodysplastic syndromes. I was very fortunate to be part of a study where, we are assessing the experience of people with myelodysplastic syndromes around the United States. And we're enrolling these folks into this study at the very moment when MDS is a suspected diagnosis, so before their very first bone marrow biopsy. In this study, patients were enrolled because they had abnormal blood counts and they underwent a bone marrow biopsy. And some of those folks did have myelodysplastic syndromes, some had vitamin deficiencies, some had leukemia, and some had completely other diagnoses.

In this study, we looked at what these patients local pathologists said was their diagnosis. So somebody might have been enrolled, for example, in Georgia, received the diagnosis from their pathologist in Georgia, and then that bone marrow sample was sent to one of our central expert pathologists, people who wake up in the morning and spend their entire days looking at bone marrows from people who have diagnoses like myelodysplastic syndromes. And when these experts gave their diagnoses, it turns out that they differed from the local pathologists, who may not have had expertise in diagnosing MDS, 20% of the time. And these were not those subtle differences in diagnoses that, I mentioned earlier, eggheads like me get excited about, there were major differences. So for example, a local pathologist may have said somebody had MDS, and our central pathologist said, "No, they don't. They've got a vitamin deficiency." Or, a local pathologist may have said a person has a vitamin deficiency, and our central pathologist said, "No, no, no, wait a second. This person has leukemia." So, the bottom line, how often do mistakes in diagnoses happen? About 20% of the time. So one out of five people receives the wrong diagnosis, where they may be told they have MDS when they don't or they may not be told they have MDS when they do.

Leigh Clark:    Dr. Sekeres, how do these mistakes impact patients?

Dr. Mikkael Sekeres:   So, sometimes they don't have an impact on patients at all. It... As I mentioned, there may be subtleties in differences in diagnosis that matter to people like me, but don't matter to my patients and don't affect the treatment that I recommend anyway. So from a patient's perspective, who cares if I'm called one subtype of MDS when I really have a different subtype of MDS?

Leigh Clark:    Ah.

Dr. Mikkael Sekeres:    And I think those sort of subtleties in differences in diagnosis really reflect the fact that there are gray areas in how we make diagnoses about MDS. On the other hand, there are some major differences in diagnosis, like I alluded to in our study, where it has the potential of affecting treatment.

So, in our study, we took a closer look at those 20% of patients who received the wrong diagnosis from their local pathologist. And when we looked at those patients, three of us on the study team who r- really, eat, drink, and breathe MDS, uh, for our professional lives, we all have clinics where we see people, um, who have MDS every single week, we looked over the treatments that those patients received based on their local diagnosis and compared it to treatments we would have recommended based on the central expert diagnosis. And what we found is that 7% of those patients actually received the wrong therapy.

Leigh Clark:    If a patient feels they've been misdiagnosed, what should they do?

Dr. Mikkael Sekeres:    So it's hard to know if you've been misdiagnosed. I mean, when I go to my doctor and my doctor says that I have some medical condition, (I'm fortunate not to have a lot of medical conditions,) but I, I generally believe my doctor, or I have some sort of labs to support the fact, that I have the diagnosis that my doctor is, is giving me, or some vital signs that support the diagnosis that my doctor is giving me.

So one aspect of determining if, if there may have been a misdiagnosis is actually to look at your own test results. Um, a lot of centers around the country have electronic medical records, and it's become much more common that we as patients, I'm including myself as a patient 'cause I'm also occasionally a patient, have access to our medical records. So go ahead and look at the diagnosis in the read from the pathologist. And if it's confusing or it doesn't make sense, print it out, bring it to your doctor, and ask your doctor to review it with you. And, you know, it may be that it's a very clear diagnosis from the standpoint of the pathologist. If it's not, y- you also have the freedom to say to your doctor, "Do you think there's any chance that this diagnosis may not be MDS," or, "I'm seeing these phrases here where a pathologist is saying things like, you know, 'resembles MDS' or 'supports a diagnosis of MDS'. Does that mean that the pathologist isn't sure or is that, are those just words that pathologists use in their reports?"

So, um, if for any reason you feel as if there, there, you're wondering if there was maybe a misdiagnosis, look at your own pathology reports and review them with your healthcare team so that you can feel more certain a- about it. If at the end of that you still don't feel certain about it, that may be an opportunity to seek a second opinion.

Leigh Clark:    Patients may be reluctant to seek a second opinion. They may feel they'll offend their current physician. What advice do you have for those patients?

Dr. Mikkael Sekeres:    Yeah, you know, it's, it, and, um, I'm really happy that you asked that, Leigh, because it sure is easy for me to say, "Oh, you should seek a second opinion," and, and I'm the, I'm the guy or one of my colleagues is the, the woman that you go and see, right? Of course I'm gonna say, "Seek a second opinion," 'cause I'm the second opinion. I love to see people who have MDS so we can have informed discussions. But it, it does put patients in a little bit of a tricky situation.

Um, I always say, and I've heard my colleagues say this as well, "No doctor should be offended about someone who wants to seek a second opinion about a rare diagnosis." And let's be honest, MDS is diagnosed in about four per 100,000 people in the US each year. It's a rare diagnosis, so you owe it to yourself to go and make sure of that diagnosis and make sure of the treatment you are receiving from somebody who wakes up in the morning and spends the entire day thinking about MDS.

How I would approach this is to say to your doctor, you know, "I really value my relationship with you. I heard this podcast, I've read online that it's important to seek a second opinion. I hope you won't get offended by that. I would like to just get another opinion that'll make me feel better." If you feel as if you don't want to take that on yourself, listen, blame somebody else, "My spouse is saying I should get a second opinion. My kids keep saying I should get a second opinion. My brother or sister keeps saying that I, I should get a second opinion." And you can externalize it a little bit so that it makes it seem as if it's not you driving this, it's somebody else.

Most doctors will say, "Great. Go ahead, seek a second opinion. Let me know what they say." The, the doctor who gets offended about this, and I have heard this about certain doctors who will get, get upset at patients, that's someone that I would seriously reconsider whether that should be your doctor. Because what that says to me, someone who gets offended about your wanting to seek a second opinion, sounds to me like somebody who may be a little bit insecure in either the diagnosis or the treatment he or she has recommended. So I think that's even a greater reason to go and seek a second opinion.

Leigh Clark:    Is there anything else that you would like patients to know about getting a second opinion or making sure that they've gotten the correct diagnosis?

Dr. Mikkael Sekeres:    You know, the, the fact that you're listening to this podcast means that you're engaged in your healthcare. I know a lot of doctors who, um, get irritated when their patients go on to what we call Dr. Google, right, and try to learn more about their diagnosis. I actually love it. It means that I have patients who care about their health, uh, who want to make an effort to feel better, um, and to understand their medical condition, and want to be a part of the decision making with that medical condition. I love that. I feel as if we should be partnering with our patients, walking hand in hand, on this journey. So read about your diagnosis, learn about it, engage your healthcare team and let them know that you want to be part of decisions around your diagnosis, uh, and, and want to be an active member in that. Uh, I think that's the greatest thing you can do for your own health.

The other thing to do, I mean, it's one of the privileges of my career, um, that I've been involved with the Aplastic Anemia and MDS International Foundation for the past, my word, I think over 15 years. Organizations like this are great because they have your interest as their primary focus. So continue to tune in to things that AAMDS is, is putting up on their website or emailing you about, listen to podcasts, to webinars, particularly ones where you can ask questions, so you can also hear about changes in how we think about MDS and the treatments for MDS.

Leigh Clark:    Thank you so much, Dr. Sekeres, for sharing your time and your expertise with all of us. If you'd like to learn more about bone marrow failure diseases, please visit our website at aamds.org, you can also follow us on Facebook, Instagram, and X, or by calling us at our helpline at 800-747-2820. Thank you again for joining us today.