Seeking a Second Opinion

The disease journey for all patients is punctuated with important points along the way - such as diagnosis and treatment. Amyloidosis, being a complex and not-well known disease, makes the journey all the more turbulent. For example, tests may imply a false-positive, or ill-informed providers may not be fully versed on the disease, either of which could lead to a mis-diagnosis. Or deciding which treatment is the appropriate path for a patient is another inflection point. We know providers always seek to do the best for their patients; however, there may be times where having another provider provide their opinion may be appropriate. That’s the topic for this episode - seeking a second opinion. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Transcript

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SPEAKER_00 0:00

Hi everyone. Welcome to the All Things Amyloid Podcast, where we feature patients, caregivers, and clinicians who discuss amyloidosis, a rare and incurable disease. Amyloidosis occurs when the body builds up abnormal amounts of misfolded amyloid protein, which can lead to serious and life-threatening outcomes. I'm your host, McKenzie, an amyloidosis patient and founder of Mackenzie's Mission. Our goal for this podcast is to raise awareness and share firsthand what it's like to live with this disease, to care for those affected by it, and to treat it. We hope this leads to earlier diagnosis and start of treatment, which will improve patient lives. In today's episode, we'll be talking about second opinions. I'm happy to have with me today Mike, who's going to share his experience with second opinions during his journey with AL amyloidosis. Most patients may not think about getting a second opinion or know when that even may be appropriate. Yet it's right that all patients have. And we're going to explore this today. All right. So to begin, Mike, could you share a brief summary of your journey with amyloidosis?

SPEAKER_01 1:18

Yes, uh glad to do so. Uh amyloidosis, I might preface uh that it's a very complex uh condition and it affects patients differently. With my symptoms, uh fatigue, loss of weight, dramatic weight, 15 to 20 percent of my body weight, lack of energy, easy bruising, um muscle mass, and it and then I found out later I had kidney dysfunction. And uh weeks turned into months of going from doctor to doctor provider, they couldn't decide. And finally, I had a hematologist uh do a test and direct me to a hematologist, and the hematologist did a bone biopsy and said I had a condition called multiple myeloma, so it's cancer of the plasma cells, and he said that he I needed to start uh chemo right away, and his office would contact me to schedule that, but before they do uh patient education, and so his office called me uh once, twice, three times. Uh they seemed to have forgotten about the uh patient education and um and I did my research online. I talked to um various groups, uh, national organizations, uh local groups, individual patients, and all my research found that the experts were in my backyard at Mayo Clinic. So I wanted to pursue a second opinion and I was gonna see the initial hematologist anyway, and I felt like we had a great relationship and I respected him, and I wanted to tell him in person that I was gonna seek a second opinion. So I I met with him and uh I told him I was gonna seek his second opinion, and his response took me back because he said, I think that's a great idea. And I told him I didn't think he'd respond that way. Um and he wanted to know where I was gonna get a second opinion, uh, where the experts were uh at Mayo Clinic. And um, so I went there the following week. They did their own testing and workup and said reconfirm my diagnosis at the time was multiple myeloma. Uh they also I found out later that they're also the amyloid experts as well. So in their testing, they said, Yes, you do have a multiple myeloma, but you don't need treatment at this time. So after a year and a half, my light chains continued to increase. Uh my symptoms uh increased as well, the fatigue they per they're very persist persistent. My kidney dysfunction got worse. And so they decided to do a kidney biopsy. And the kidney biopsy showed I had amyloidosis. Well, just like multiple myeloma, I had no idea what that was, so I did a lot of research on it. And um, they also educated me as well as uh as a patient, but also they had seminars. I would attend uh seminars locally as well as nationally through the internet, and I think that was very helpful on my behalf. So after a year and a half when I attested positive for another diagnosis, in this case amyloidosis, they said you need to start chemotherapy right away. And so we started chemotherapy for three, four months. And um and as a patient, you have to be all in, you know, not just touching the water, but you need to be all in ready to go because you've got a lot of people behind you, uh, not only the hematologist, but a whole team. And I like Mayo Clinic because as an internal network, I could see everybody, all the specialists in one area. So that today um I still have issues with the weight loss and um strength, muscle mass, fatigue, energy, um, and my light chains are being monitored on a regular basis as well as the kidney function.

SPEAKER_00 5:39

Yeah. Um, so let's circle back. I think this is a really interesting point about how your initial hematologist, oncologist reacted to you wanting to get a second opinion, just to elaborate on that. On that area.

SPEAKER_01 5:53

Oh yes. Um, and and like I mentioned, I was not, I was ready for him to come back to me and say that um I was thinking I was trying to undermine his expertise, his education. But uh his response surprised me because he said, I think that's a great idea. And he went up further on to say, if you have a doctor, clinician that does not want you to get a second opinion, maybe you need don't need to see that uh doctor.

SPEAKER_00 6:25

Yeah, so kind of the other side of the coin is they have more of a negative reaction when you ask for a second opinion. So if that were the case, if that were what had happened, how do you think you would have reacted to that in the moment?

SPEAKER_01 6:40

Well, that's a good point because I was ready for that, and I kind of expected that. And so I was ready for it, and um, I would be firm and proactive in my care because I valued him uh his expertise because he was able after all these months, he was the only one that could put a name on what uh my condition was. And so uh I had a name for my condition, so I appreciated that, and uh it was nothing to undermine him. I I may circle back to see him, but I think it's important to get at other viewpoints, and that's what I've chosen to do.

SPEAKER_00 7:20

Yeah, I couldn't agree more. I think it's really important that kind of as healthcare providers, no, we just as a healthcare provider, but kind of the healthcare provider community in general, understand that sometimes when we want to seek second opinions as patients, it's not personal by any means. I think it comes from sometimes a place of fear, right? Being afraid that, oh, maybe this is the diagnosis. I want to be really sure before I go down this path. Or maybe it's a place of, you know, wanting confirmation. This is a this is a big diagnosis and it comes with a lot of implications. And you want to be really sure before you start thinking about going down a treatment pathway that could involve chemotherapy and really some potentially life-altering medications. So um just kind of remembering that this isn't personal and that, like you said, I think it's really important to understand that you know we're appreciative as patients that you were able to first identify that. And often that's the most difficult thing. So, you know, there is a lot of value in that. Often the second opinion isn't personal. But, you know, that's a little a little aside, but tell me a little bit about your your motivations for wanting to get that second opinion.

SPEAKER_01 8:32

Well, in my my research, and and before I m move on to that, I I want to emphasize his office uh had called me uh several times to start chemotherapy right away. And the last time they called me, they asked if I was refusing treatment against medical advice. Wow. And I said, not at all, because I want to make sure this is a direct course of action for me. This is a big step for me, as it should be for anybody listening to this podcast or any patient, and you should be proactive on that. Um so I I wanted to emphasize that aspect. And Mackenzie, you want to go ahead and rephrase that question?

SPEAKER_00 9:16

Yeah, no, absolutely. So, really just trying to understand what your motivations were for seeking a second opinion ultimately.

SPEAKER_01 9:23

And you know, I think it's valid for every patient, you know, to see what the options are, to make sure there's not a misdiagnosis, because amyladosis is so often overlooked, misdiagnosed, misunderstood. And I can attest to this because the number of um doctors I saw they couldn't tell me what it was or what was going on. It was way over their head. And uh one doctor that my primary care doctor, I was very frustrated with when he said, I told him I was losing so much weight and muscle mass, I'd lost 20% of my uh body weight, and I knew he was in over his head when he came back and said, Well, you know, you're good for your height, and that's when I decided I needed to go to see other doctors. And I think that seeing a second opinion is important um to reinforce your direction, your decision. And as I mentioned before, you gotta be all in when you do a treatment, and not just touching the water, feeling the water, but all in physically, emotionally, and spiritually.

SPEAKER_00 10:33

Yeah, absolutely. I think that those are some really great points that you make. And so, in addition to confirming the diagnosis of amyloidosis, you know, what what might be some other reasons you think that patients might seek out a second opinion?

SPEAKER_01 10:52

Well, see what options were available. And and just like my situation, I went to the first um hematologist. He said, I have 20% involvement. And uh getting a second opinion, they said, Yes, you got uh 10% of involvement, but you really don't need treatment at this time. And I really didn't need treatment for a year and a half until I was diagnosed with amylosis. And there's and so I think it's very valid that you be proactive in your care as a patient and also get that support from family and a caregiver, even though I'm very proactive as a patient. My wife would will go with me on critical situations, and she'll come up with questions that I don't think about, or we'll re-review some things or what our options are, and she'll note uh a number of things that I didn't think about that the doctor or the uh provider may have have indicated. So I think that's important to be proactive and to seek out a second opinion, uh seek out a third opinion because it needs to be to your satisfaction. It's important that you have confidence in that doctor, you have a good relationship with him. Um, I did with the first doctor, uh I really valued him diagnosing me since I'd gone through a number of doctors that couldn't give me an answer. But uh the neurologist that I was working with uh went a step above and noted, um, did some special testing and contacted the hematologist and he reconfirmed it. And uh I felt like he had something invested in me and uh I had confidence in him, but it was my decision to seek a second opinion, and that's where I found the um amyloid experts were at Mayo Clinic.

SPEAKER_00 12:51

Yeah, I think you make some some really excellent points here, particularly about finding a provider who meets who you're satisfied with, right? That maybe even not a second opinion enough, a third, a fourth, a fifth, you know, whatever it takes to feel satisfied and and exactly like you said, confident that the that the person caring for you is is up to the challenge and kind of understands the uniqueness of your particular situation as a patient. So I think that's some excellent points. You know, it's interesting for me. Uh back in 2017, I received my initial diagnosis from a hematologist following a bone marrow biopsy. And he admitted that he wasn't terribly knowledgeable about the disease. He specialized more in the multiple myeloma side and just didn't particularly feel confident or or comfortable treating amyloidosis. And you know, I appreciated that he was honest. And you could tell when he told me, I think it's amyloidosis, you could feel you could just feel the uncertainty in his voice, and it just left me feeling concerned, right? So um what I thought was really interesting was that he recommended that I go to a center of excellence for amyloidosis, and he recommended both the Mayo Clinic and Boston University. And within two weeks, you know, I was just like you right there at the Mayo Clinic, going through the full battery of tests, and they did, in fact, diagnose and type my amyloidosis is AL amyloidosis. So I wouldn't necessarily say that I requested a second opinion, but I appreciated that the diagnosing physician knew enough to point me in the right direction. So I could rather get a confirmation uh of his suspicion.

SPEAKER_01 14:42

Uh may I interject there and say, you know, I applaud your doctor um to direct you to uh specialists or subspecialists that were there are experts in the field of amylosis. And I think that's so important. And I applaud this doctor that directing you to someone that can give you better care than himself versus uh struggling or learning as he went. Yeah. And and I am I applaud that. And kind of like when I, my first doctor, he diagnosed me, he wanted me to start on treatment right away. And uh when he wanted to know where I was gonna get my second opinion, and he said, I they're the experts. And he also said, I'm sure they'll concur with me because they're the ones that developed the protocol I was gonna set you on. So I applaud your doctor for having the foresight and the courage to direct you elsewhere.

SPEAKER_00 15:40

Yeah, no, no doubt, because it it it does, it takes courage and it takes a sense of humility to openly admit to a patient that that you're not comfortable doing something, but recognizing him recognizing that it was in my best interest as a patient to be seen by someone who knew more than him. You know, I I am very grateful and and I really commend him for doing that. And then, you know, there's the flip side where seeking a second opinion really is because you lack confidence in your physician. And you know, my my diagnosis and my journey initially started with uh a seemingly benign lump in the back of my throat. And I remember going to see a local ENT physician, and you know, I was concerned about this. I didn't have you know a medical knowledge. I was finishing up college and I was still knew enough to be concerned by the the presence of this lump. And I I saw the ENT and I expressed my concerns to her and I thought, you know, I'd really like to biopsy this. And she just she we just butted head, she didn't agree. She thought, let's wait and see, let's wait and see, you know, and all the while this lump is getting bigger and I'm getting more and more concerned. And ultimately I was like, you know what, this is enough. I I I need to find someone who will kind of help me explore and explore these concerns and these fears that I'm having and and get me the answer that I'm looking for, because I'm not a wait and watch person. That's that's not my personality. So to be able to find a provider who whose style almost matched mine as a patient, I think was really important. And sure enough, I I got a second opinion. I first visited I immediately had it biopsied, and sure enough, it was amyloid. So, you know, it's unfortunate there are situations like this, but they do happen. And when those situations arise and you know, in your gut as a patient, you just know it's it sounds cheesy and it sounds cliche that you know your body, but you do. And regardless of your medical knowledge, I think it's so important that you advocate for yourself. And like you said, if you don't have confidence in the person, find another one. It's not personal, you're doing it for your best interest. So um, you know, I just wanted to add in the tidbit that there's, like we talked about, there's really many reasons why as patients we seek second opinions.

SPEAKER_01 18:23

Uh McKenzie, may I ask you? Uh, I have empathy as a fellow amyloid patient, but I can't imagine as a young person just finishing up college how that that you would process that. And can you just mention that how you're doing now?

SPEAKER_00 18:40

Yeah, absolutely. It was it was certainly challenging. I think, you know, when I first got that diagnosis, I was a week or two from graduating college. And I I, of course, I went to Dr. Google, and that was a bad idea. And Google told me I had what, six months, 18 months to live, and you know, I was just gutted. How can you not be the you you just your heart sinks? And so to be able to ultimately kind of find my way to a center of excellence and the people who really are are leading the way in this disease. I've gone through treatment. I am doing incredibly well. I am like in a complete response, I'm not on any medications, so all is good, and I'm very grateful. And I've certainly learned a lot from uh the experiences we've had over the years. So let's go back. Let's talk a bit about the reality. You got your second opinion, it confirmed your multiple myeloma, and then you get the additional diagnosis of al amyloidosis. Walk me through what that's like and and kind of what's going through your head, what that experience was like for you.

SPEAKER_01 19:53

Well, I'm I'm I'm one that does a lot of research, and I asked the doctor's point a question of what it was, the how for what come what for and how come and so forth. And I feel confident that if I had gone to another facility, it would have been overlooked or not recognized. Well, working with Mayo Clinic, even the technicians could recognize uh where the amyloid was building up. Uh 10 to 15 percent of multiple myeloma patients develop amyloid doses. And many times it's debated, you know, what comes first. Um, but I felt uh real confident because uh the whole healthcare team I was working with knew what they're doing and they educated me, and I saw it out other uh groups, um the amyloidosis group, um, and also seminars and podcasts I could watch to learn more about it. Um yeah, it's a shock to uh my your system, uh just like any diagnosis. But this one is a rare condition that that, as I mentioned before, is off often overlooked or misunderstood or ignored. So I feel fortunate a year and a half later, I after I was diagnosed with multiple myeloma, I was the doctors had the foresight to do a kidney biopsy and discovered the amyloidosis.

SPEAKER_00 21:20

I'm sure it was just you know an absolute roller coaster of emotions going through that and not only getting one devastating diagnosis, but two is is certainly a challenge. And you know, I commend you for going out there and advocating for yourself and and really getting kind of the answers and the support and the the care that you you wanted. So, in closing, any messages, key takeaways you have for patients who may be listening to us today?

SPEAKER_01 21:51

Well, amylosis is a very complex uh condition, a disease. You know, multiple myeloma is a cancer. Amyidosis is is not, uh, but it's a very critical condition, very um, yeah, very critical condition, and and there's some parallels of the way it's treated, uh, but those there's no cure. And after three rounds of chemotherapy, my light chains are down. Uh they say I'm in uh minimum residual um remission, I guess you you should say, but it's still there. Um my kidney dysfunction and uh is still there, and some of the health challenges are still there. And I think you need to pursue, continue to be active in your care and or have the support of a family member or friend to be proactive in in your health care because you need to challenge the doctors. And I I find that I ask challenging questions to the doctors, and they all appreciate that and and value that. And I think that's important that you need to be proactive in your health care or have a caregiver or someone to be proactive for you, and seeking a second opinion, a third opinion. And sometimes we overlook the fact that the doctors actually work for us as patients.

SPEAKER_00 23:15

Yeah. Uh those are those are some really excellent points that I think patients facing a facing a similar situation can can lean on. So, Mike, I just want to thank you so much for joining us today for sharing your journey and and some really insightful and valuable knowledge for for the patients in our community.

SPEAKER_01 23:36

Well, glad to do so. And thank you for allowing me to be a part of this. Of course.

SPEAKER_00 23:40

So hopefully these thoughts will be helpful to others in thinking about a second opinion and remind them that self-advocacy is a right for every patient throughout their healthcare journey. Thank you for listening to the All Things Amyloid Podcast. If you find our podcast informative, please follow and share it with others. If you want to learn more about the work we're doing at Mackenzie's Mission, please visit mm713.org. We'd also like to thank AstraZeneca Pharmaceuticals, Alexion Pharmaceuticals, Alnylum Pharmaceuticals, and Bridge Biopharma for their sponsorship to help raise awareness about amyloidosis. We hope you stay tuned for future episode drops. Thanks for listening.