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Scot: Hey, Mitch. If you found a lump someplace on your chest, what would you do?

Mitch: Like, on the chest? Under?

Scot: Yeah. Maybe under the chest, under your arm, or by your nipple, or just anywhere on the chest, if there was a lump there, like a marble.

Mitch: I don't know. I legitimately would just assume it was, I don't know, a cyst or something like that. I'd probably just wait and see how it turned out, see if it went away. Yeah, I don't know.

Scot: That's a pretty standard man policy right there. It's just, "Well, let's see what happens to this thing. Maybe it'll just go away."

Troy, how about you? I mean, you're a doctor, so you're probably going to have a different answer.

Troy: Well, that's the problem. I am a doctor, so I tend to either think everything is cancer or I just ignore it. So I would probably do one of those two things. And like Mitch said, it would probably be based on what it did. If it started getting larger or more red and kind of inflamed around that area, I'd probably get it checked out, but again, I'd probably put it off for a while before I did something.

Scot: Yeah. Would you ever think it was breast cancer though?

Troy: I don't think I would. It's just not something I think about in terms of as a man.

Scot: That's not unusual. A lot of guys don't even know breast . . . A lot of people, I should say, don't even know that male breast cancer is a thing. They think it's a woman's disease. Another common thing is, "Men don't have breasts, so how am I going to get breast cancer? I have a chest. I don't have breasts."

Mitch: Okay. I'm sorry. That's fine.

Scot: "And I'm a manly man, so how can I get a woman's disease of breast cancer?" So here's the 30-second part of the podcast. If you're a man and you find a lump on your chest, you should have it looked at. While male breast cancer is rare, it is deadly if ignored. And it's really treatable if it's caught early.

So this is interesting. The time it generally takes from a man finding a lump to seeing a doctor is about 12 to 14 months. It takes over a year from noticing that lump.

So the 30-second version is if you find a lump, have it looked at. Don't talk yourself out of it. Don't give into you and your society's perceptions about men who get breast cancer and what those are. But if you want to learn more, then stick around.

This is "Who Cares About Men's Health," providing information, inspiration, and a different interpretation of men's health. Today's episode is a "Men's Health Essentials" episode, a strange one because it's about male breast cancer, something that a lot of guys don't even think is a thing.

I'm Scot Singpiel. I bring the mics and the BS. Welcome to the studio, actually remote, the MD to my BS, emergency room physician Dr. Troy Madsen.

Troy: Hey, Scot. This is a great topic. I'm glad we're learning about it.

Scot: And balancing us all out is Mitch Sears.

Mitch: Oh, I like that. But a year? A year you have a lump and we don't go talk about it?

Scot: I don't know.

Mitch: Okay. All right. I'm excited.

Scot: And we're super lucky to have an expert with us. Dr. Matt Covington is an expert in cancer imaging, and he specifically focuses on early detection and accurate staging of breast cancer. From Huntsman Cancer Institute, Dr. Covington, welcome to the show.

Dr. Covington: Thank you, Scot. I'm really happy to be here.

Scot: All right. So the first thing I want to know is I have breast tissue, huh? What? Why didn't anybody ever tell me this?

Dr. Covington: Yes. I think that's news to a lot of men. We assume that we don't have breast tissue. I think we like to think that we have skin and nipple and muscle, and that there's no breast tissue in between. But the truth is that there is a small amount of breast tissue in every male.

And as we'll talk about today, sometimes that breast tissue can cause problems and sometimes it can cause lumps that should not be ignored. And what I really hope to accomplish today is to convince everybody that if a man feels a lump in your chest, it needs to be evaluated.

Scot: Yeah. So why is the rate of mortality so high for men who get breast cancer? What do we know about that?

Dr. Covington: The mortality rate is high, and it's much higher than it should be. The primary reason for that is that male breast cancer is often diagnosed late. There are a few reasons for that that we could get into, but it's that late presentation to seeking imaging. It's that delay in getting a tissue diagnosis of breast cancer that allows those breast cancer cells to spread from where it started in the breast, often into the lymph nodes, and then unfortunately often outside of the lymph nodes to cause metastatic disease.

Mitch: One of the questions I guess I have here is how much higher is the mortality rate then? I understand cancer progresses in phases and after a certain point, it's going to be really hard to treat it, but if we're waiting 12 to 18 months, how much higher is the mortality rate in men?

Dr. Covington: So what I can tell you about the mortality rate of male breast cancer is that unfortunately, five years after diagnosis, about half of all men will have passed away from the disease.

Mitch: Wait. Half?

Dr. Covington: Yeah. We often look at five-year survival for all types of cancer, and in the case of male breast cancer, the five-year survival is something around 40% to 65%.

Scot: And is that because we are waiting so long, or is it a more insidious type of cancer than what women get?

Dr. Covington: You're onto something with both of those statements that you said. In some cases, the biology of the breast cancer is actually a little bit more aggressive, we think, in males. That principle translates the same across many cancers. If you're someone in the minority in terms of getting a cancer, if you do get that cancer, often it will be a little bit more aggressive. That's not necessarily unique to breast cancer.

The other reason why mortality is delayed is that you lose the window to cure the cancer if you wait too long. It's the same game we play with female breast cancer, and that's why screening exists for breast cancer. Things like screening mammography exist because breast cancer is curable if you catch it early enough.

That same principle applies to men. Unfortunately, fewer men are presenting with curable breast cancers because they're simply not early. They've already started to spread by the time we even realize it's there.

Troy: I was going to say, just to put that in perspective, what's the five-year mortality rate for breast cancer in women?

Dr. Covington: So that depends a lot on the stage of diagnosis, but overall, you're looking at something like 80% to 90% survival at 5 years. But that five-year survival will look similar to men if you're considering advanced stage cancers, meaning Stage 4 where it's distant, where it has already spread throughout the body. Survival for those women will look very similar to that of men.

Scot: It's just they're doing a much better job of getting women screened. Women are doing a much better job and there's a lot more awareness.

Dr. Covington: That's correct. Well, screening for breast cancer doesn't exist for most males. That's true. You have to have certain genetic risk factors. You have to have some idea that you're at high risk to even undergo some sort of screening.

That's different with women where there is recommended national screening. Starting at age 40 is what we typically recommend. For men, screening would simply be paying attention to your own body. Did you notice a lump? If so, it needs to be evaluated.

Scot: I like that. I like that linear relationship. It's easy. I almost want to put that in Caveman. "Notice lump, get evaluated."

Dr. Covington: I think that could be a great public campaign to raise awareness, yes.

Scot: That's four words. That's perfect.

Troy: That's too big a word. Just say, "See lump, get checked."

Scot: "Go doctor."

Troy: "Go doctor." I'm curious though, Matt, as you're talking about this. And obviously, it sounds like screening is a huge part of it. There are very clear screening guidelines for breast cancer in women, certainly, that don't exist in men because the disease is so rare. But with that being said, we do talk about breast self-exams. Women have been counseled to do it. I've heard evidence has been mixed on how helpful that actually is as identifying things. Should men be doing self-exams regularly feeling for lumps and bumps, or what are your recommendations there?

Dr. Covington: So I think it's definitely a good idea to pay attention to your body. And the breast is not the only area where self-exam could potentially save your life when we're talking about men's health, particularly testicular self-exam. If you notice a lump on your testicle, that's probably the most likely way that you'll ever detect that you have testicular cancer. The same is true with the male breast.

Now, let me frame this a little bit. If anybody has a mastectomy, even if, say, a woman has breast cancer and that it's treated with mastectomy, meaning that the breast is removed, after the mastectomy happens, how do we screen those patients? That's a question we can ask ourselves. The answer is self-exam and clinical breast exam.

And the reason why you typically stop doing mammography after the breast has been removed is that if there is a cancer present, you're going to feel it. You don't have all of that breast tissue that can possibly hide it, and that is essentially the situation that men are in. You simply don't have a lot of tissue. There's skin, a little bit of fat, or some people might have a little bit more fat. There's a lot of variation there.

Scot: Quit looking at me like that. It's just not cool. I'm not going to have doctors in the studio anymore.

Dr. Covington: For the record, I was not looking in your direction.

Scot: Okay.

Dr. Covington: But what that means is you have a really high likelihood of actually finding the breast cancer early if you're paying attention.

Scot: So you're telling us that there really aren't any other symptoms. It's really just kind of self-exam, lumps. Am I hearing that correctly?

Dr. Covington: So that will definitely be the most common symptom of male breast cancer, is that you've noticed a new lump. Other symptoms can include things like nipple discharge. I would hope if a man starts having anything clear or bloody . . .

Mitch: It'll probably go away.

Dr. Covington: . . . especially blood from the nipple, get that checked out. Scaling of the nipple, that's something you might not think about. If your nipple is getting pulled in, that's something you might not always think about as a sign of breast cancer. Or if you see changes of the skin over your chest like redness, dimpling, thickening, things like that, that can also be a sign of male breast cancer.

But by and large, it will typically present with some kind of lump. Whether it's painful or not does not help you know whether it's breast cancer or not. So don't use a lack of pain as a reason why this is not a breast cancer.

Mitch: Is anyone else just casually feeling themselves up right now to see if they have anything?

Scot: Well, I would, but I don't know where to feel. Is there any particular place I should be feeling?

Dr. Covington: Definitely, something we need to talk about is feeling behind the nipple. And why I raised that is we absolutely need to discuss something called gynecomastia. And that's a little bit of a complicated term, but it's very important for our discussion, and let me explain why.

Gynecomastia is by far the most common cause of a lump in a man. If you feel a lump, typically, it's going to be gynecomastia. In fact, to the degree that a lot of doctors will probably automatically assume that it will be gynecomastia, but that would be a mistake. We don't want to do that.

Let me talk about gynecomastia, if I could take a moment.

Scot: Yeah. I hope you're going to tell me what it is.

Dr. Covington: Yes.

Scot: Okay. Good. Because right now it's just a big word that I'm afraid of.

Dr. Covington: So, first of all, gynecomastia is not a tumor or a cancer. It is simply an increase in the amount of breast tissue that a male can have. And it's most common in men at two phases in life.

One is puberty, and a lot of teenagers when they're going through puberty get a little bit of swelling and tenderness behind the nipple. That is not uncommon, and it happens because hormone levels are changing during puberty.

It also is very common in men . . . and I do mean common, we see this all the time in the breast imaging clinic . . . in older men often on some sort of blood pressure, cardiac, or mental health medication. And some of those medications also cause breast enlargement to increase a little bit, and that usually will present with swelling behind the nipple.

That's usually very soft. It has a very typical feel for people who are used to identifying between gynecomastia and breast cancer, such as a breast radiologist or a breast surgeon.

And it is what we need to make sure a lump is. We want to see that your lump is gynecomastia because that means it's not cancer. The way to do that is a little bit with physical exam. If there's a really hard mass, that suggests it could be more of a cancer instead of gynecomastia. But also, a mammogram can help us here. And we need to talk about that, that men do get mammograms.

Scot: I still, though, don't know . . . So I'm feeling around the nipple for a hard . . . I still don't know where I'm supposed to feel, I guess.

Dr. Covington: So feel the entire chest. It doesn't take that long. It's not that big. You can do it.

Troy: Did you hear that?

Scot: Yeah. Again, with the looking at me.

Troy: It's not that big.

Scot: I'm going to have to go back to the gym. I'm not as swole as I thought I was, I guess. All right.

Troy: Yeah. This will only take you about two seconds, Scot.

Scot: Wow.

Troy: Hey, I'm just reaffirming what he said.

Scot: Yeah. I'm going to go do some pushups, see if I can beef things up. Troy, you have a question, right?

Troy: My question is, as we're talking about this, I'm hearing this, and certainly any time you hear about cancers and 50% mortality at 5 years, it really raises a lot of concerns. So I'm wondering are there certain people who should be concerned about this more than others? Meaning are there certain people with certain body types, risk factors, such as family history of breast cancer in women, things like that, testosterone therapy? Anything in particular where that's going to increase a man's risk of breast cancer?

Mitch: Or even if someone has a lot of extra weight and maybe they have more fat on their chest or something, is that something too?

Dr. Covington: Those are great questions. Let's talk about risk factors for male breast cancer. First of all, older age is a risk factor for all cancers, and that includes male breast cancer. Genetic mutations, things like the BRCA gene. The BRCA gene, that's what Angelina Jolie had and why she had a double mastectomy. That was pretty widely covered by the media when that happened. The BRCA gene raises risk for breast cancer in everybody. Whether you're a man or a woman, you're at higher risk if you have that.

Scot: I have a BRCA gene just like . . . Angelina Jolie and I have something in common, guys.

Dr. Covington: I hope you don't have a BRCA gene.

Scot: Oh, I don't have a BRCA gene. Just women have those?

Troy: No.

Dr. Covington: No. Men can have it too, yeah. That's the point.

Scot: Oh, you hope I don't because that would . . . Okay.

Dr. Covington: Absolutely. If you had the BRCA gene, I'd be worried that you could have male breast cancer and other types of cancer, including prostate cancer. You don't want it.

Scot: No, I don't want to have anything in common with Angelina Jolie, I decided.

Dr. Covington: But what that means is if you're a man in a family and you have a lot of women in your family that have had breast cancer, and they have genetic testing and they have the gene, that might be important for you to know about. That's definitely something you should talk with your physician about.

And if it's one of these genes like the BRCA gene, the importance of self breast exam, especially probably seeing a physician and having them do a breast exam every year on you also, is important.

Prior radiation therapy to the chest, that's something that men have. You get other cancers, say lung cancer, lymphomas, different things, melanoma, where you might have had radiation to the chest, that can increase your risk of breast cancer.

Using estrogen, we need to talk about that. Estrogen is used for gender transition, and if a genetic male is using estrogen, that does have a significant increase in breast cancer risk to the point that you might want to consider mammographic screening. There are a lot of ongoing studies about that as we speak. We'll have more information in coming years.

Other genetic conditions are things like Klinefelter syndrome where someone might have an extra X chromosome.

If you've had your testicle removed, say you had testicular cancer and it was removed, that lowers your testosterone levels. That allows estrogen levels to have a little bit more influence on your body. That can increase breast cancer risk.

If you have cirrhosis of your liver, that means end-stage liver disease, and therefore heavy alcohol use can increase male breast cancer risk.

And let's talk about weight. Being overweight or obese does increase breast cancer risk, but it's not because you might have more fat in your breast. It's because that actually increases the amount of estrogen in your body. Having more fat allows estrogen levels to rise for reasons we don't need to get into. Therefore, excess body weight is a breast cancer risk factor whether you're a man or a woman.

Scot: Man, that plays back into our Core Four that we talk about on the show, which is to be healthy now and later, you should get some activity, your nutrition, sleep, and emotional health. And of course, that exercise and nutrition is to keep that body weight kind of under control. Time and time again, when we talk about numerous diseases, body weight is such a big factor, and especially here with breast cancer it sounds like.

What about something I've eaten or some sort of environmental factors? Are those risk factors as well? Like, maybe men who work under certain conditions?

Dr. Covington: I would say those are not well understood. I can't think of anything specifically in terms of an environmental exposure that would raise your risk of male breast cancer substantially. We pay most attention to genetic mutations that cause breast cancer, like BRCA, as well as family history in terms of estimating someone's risk.

Scot: And then I also read that non-Hispanic Black men, according to the CDC, have a higher risk than other racial or ethnic groups. I just want to confirm that.

Dr. Covington: Yes, I believe that's true. But that doesn't mean if you are not in that subgroup that you should not pay attention or ignore a lump in your breast.

Scot: Yeah. It's just if you are in that group, that's just another reason why . . . The baseline is, "Lump, go doctor." I made it three words, guys.

Troy: I like it. But just to clarify, now that we've really simplified it, "Lump, go doctor," when you talk about a lump, what do you mean by a lump? If I feel on my chest, and I feel an area that's maybe the size of a pea and it feels kind of firm, should that concern me? Or is this something larger and it feels like a golf ball, or a marble? At what point should I really be concerned when I'm feeling around there?

Dr. Covington: Here's the key. You want to find cancer when it's the size of a pea or even smaller. So what I would say is if you feel a lump, even if it's only pea-sized, and you're certain it wasn't there before, you think it might be new, don't delay, go see your doctor, see what they think, and let them make that decision on whether this is normal or not. But you don't want to wait until you have something the size of a golf ball in your chest.

Scot: That would be bad.

Troy: So size of a pea. "Lump size of pea, go doctor."

Scot: No, you're making it more complicated. Just any lump. "Lump, go doctor."

Troy: I know. We'll keep it simple. "Lump, go doctor." When you go to the doctor, what are they going to do there? Do you expect they're going to do a mammogram or should I expect a biopsy? What should I be thinking I'm heading toward?

Scot: And specifically, am I going to a primary care physician or something of that nature, or do I go to an expert right away?

Dr. Covington: Typically, you'll be seen by a primary care physician first. If you have a primary care doctor, I would suggest you go see them first.

Scot: Or go to a clinic and get an appointment with a doctor.

Dr. Covington: Correct. And they will do an evaluation. They'll feel that area and see if they can confirm themselves that there is a lump. They'll have some kind of idea from their experience how suspicious that lump might be. And in many cases, they'll probably refer you to come see a breast radiologist, such as myself or one of my colleagues, and we will often start with a mammogram.

We need to talk about mammograms because they are key to diagnosis of breast cancer for both males and females, and they can be performed in males despite what anybody may see.

I just had a conversation recently with my mom explaining that men can get a mammogram, and that was news to her. It is a tool that is very valuable for men, but, for reasons, it seems to be tied very closely to females. That's not necessarily helpful when we're considering male breast cancer, because anybody can get a mammogram and it can be a lifesaving imaging study for anybody.

Troy: See, here I've got to say I'm in the same boat as your mom. I'm surprised to hear that men can get a mammogram too. I'm a pretty thin man, and I'm trying to think to myself, knowing how mammograms are done, how are you going to get my breast tissue in to look at it and actually do a mammogram on it?

Mitch: Yeah. How?

Troy: Logistically speaking here, I don't know how you do it, but it sounds like it's possible.

Dr. Covington: It is possible. Even if a woman has had a mastectomy and had her breast completely surgically removed, it is possible to do a mammogram. You can get enough tissue in the machine to get your images. And mammograms are very powerful tools for diagnosis of male breast cancer. I have yet to see a man come in who cannot successfully have a mammogram completed. It simply works.

Scot: We talked about the amount of time that it usually takes men to go get that lump looked at. Again, 12 to 14 months. And part of it is an awareness issue, I've read pretty widely. I think we've proven that men can get breast cancer, but not necessarily everybody knows that.

But there's also some stigma attached to it. Some of the stigma includes, and I mentioned some of this at the top of the show, they first aren't aware that men can get breast cancer, that men even have breast tissue. We don't have breasts. We have chests. It's a woman's disease. We're embarrassed. We feel like, if we have breast cancer, that makes us less of a man because breasts are generally associated with women.

And then there's that general documented phenomenon that men don't want to show weakness and admit something might be wrong with anything beyond even just getting a breast cancer diagnosis.

What are some of the things that you've experienced with your patients, Dr. Covington, as far as that stigma that may have prevented a man from coming in to see you earlier than they did?

Dr. Covington: I think the primary problem is a lack of awareness of male breast cancer. And the stigma is probably a secondary, but still important problem.

So, first of all, let's just spread awareness. Everybody needs to be aware that men can get breast cancer. In fact, about 1 in 100 breast cancers diagnosed in the United States is found in a male, and that translates to something like 3,000 breast cancers a year in men.

In terms of what I've seen with male patients who come in, first of all, they're often a little bit nervous, and I understand that. Nobody wants to think that there's any chance that they could have a cancer. And when they come in, after seeing a doctor who's ordered a mammogram, they're concerned about the possibility that this could be a cancer.

They often are relieved to find out that what we're actually seeing on imaging is gynecomastia. Like I said, that is the most common scenario, but I have definitely been involved with diagnosing breast cancer in men. And every time this has happened to me, it's a sobering experience.

It is always a little bit of a surprise to the patient themselves. It's typically a surprise to their primary care doctor. This usually isn't as high on people's radar as I think it should be. Again, men can get breast cancer and do. As I said, about 1 in 100 breast cancers will be in males. And unfortunately, I've seen too many males with breast cancer do poorly because of delayed diagnosis and presentation.

I don't want to freak out our listeners on the other hand, though. I don't want every man to be concerned as they listen to this that they have breast cancer because chances are you don't. But what we want to do is raise awareness that it's possible. We want to remind every man that if you feel a new lump in your chest, get it evaluated.

And we want to, as much as possible, drive breast cancer in men to an earlier treatable stage of presentation, meaning that we're finding out about it when it's the size of a pea rather than a golf ball.

That's the point of this, but I don't think anybody needs to go home and be convinced they have male breast cancer just because we're saying it's 1 in 100 breast cancers. It is still rare, but it should not be ignored.

Scot: I want to jump in. So it's great that male breast cancer is rare, right? But it also comes with some downsides, which we've talked about, lack of awareness. What about in the medical community? Is there a chance that I could go to a primary care physician, and just because it is so rare, those physicians are not going to necessarily be able to make the best diagnosis? How can I be sure that I'm getting an accurate diagnosis?

Dr. Covington: It is possible that male breast cancer won't be on the top of the list of a primary care doctor, even if you come in saying, "I have a breast lump." Of course, it's something they'll think about, but they will probably assume it's gynecomastia.

Something that you should pay particular attention to that was suggested is not gynecomastia is if your lump is not directly behind the nipple. That raises the possibility greatly that this could actually be a breast cancer.

Now, I don't want anyone who feels a new lump under their nipple not to have it evaluated again. That's part of a key message of what we're talking about. But especially if you feel something that's not under the nipple, and if you were to be told that that's gynecomastia, that would not be correct.

This is something that you just need a little bit of self-awareness, and it's probably worth asking that follow-up question, "Are you sure? Is there anything else this could be? And why do you think that?" Asking those follow-up questions can do wonders in terms of any health complaint, but including a lump in the breast. "Is there anything else this can be and why do you think this is what it is?"

Scot: And from a communication standpoint, that makes total sense, right? I think we all in our jobs and what we do get into these routines and sometimes don't consider the alternatives until somebody kind of says, "Hey, what about this?" or, "Hey, why do you think that?" And then that forces us to slow down and really kind of consider what's going on. So that follow-up question sounds really important.

Dr. Covington: Right. And also, if you have a lump that a doctor may have said is nothing to be worried about and it continues to enlarge, go back again.

Scot: If it doesn't continue to enlarge then, is that likely not breast cancer?

Dr. Covington: If it doesn't continue to enlarge and you've had some evaluation, whether a physical exam or imaging that's showed it's benign, then I wouldn't get concerned. If it goes away, it's not breast cancer. Breast cancer does enlarge over time if it's not treated.

Scot: Yeah. But it might be moving so slow I might not notice the enlargement. And regardless, I shouldn't be making that call of, "Is it not getting bigger?" I should have a professional make that call.

Dr. Covington: That's correct. But my point is if you're told you have a benign breast mass and you go home and, say, two months later, you are absolutely certain it's gotten bigger, that's when you need to go back and say, "Can we take another look at this?"

Scot: All right, guys. What did we learn today? Troy, what's your takeaway?

Troy: My takeaway is breast cancer is more common than I thought it was in men, and I can get a mammogram.

Scot: Yep. How about you Mitch?

Mitch: "Have lump, go to doctor." I guess that was the thing that's so shocking to me, is I actually have heard of and have had a friend of a friend have male breast cancer. So I was aware that it happened, but I did not realize that it's usually pretty fatal because men get in too late. So I'll be feeling my chest, I guess, on a semi-regular basis, and if I ever feel a lump, I'm going to go in and talk to someone about it.

Scot: That's good. And I love what Dr. Covington said. Just because you find a lump doesn't mean it's cancerous, but you should always get a lump checked out.

And my takeaway is there are a lot of things that are going on inside and outside of our heads as men. If we find that lump that might cause us to not get it checked out in a timely way, whether it's this threat to masculinity or whether it's, "Oh, it's such a rare disease. I'm probably okay. I don't have time to go get it checked out anyway." So fight through that stuff and just go get it checked out.

The other thing I do want to say is lack of awareness is one of the primary reasons, as Dr. Covington said, that men die from male breast cancer, and talking about it is the way to overcome that and any of these stigmas as well.

So what I would love it if you would do is share this podcast and say to somebody you know, "Hey, I listened to this podcast called 'Who Cares About Men's Health,' and they talked about male breast cancer, and it was really, really interesting. You should check it out." Who knows? You might be referring it to somebody who has discovered a lump and this might change their perception of that whole thing.

Dr. Covington, thank you so much for being on the show, and thank you for caring about men's health.

Dr. Covington: Thank you. It was a pleasure to be here.

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Interviewer: Amyloidosis is a rare and possibly debilitating disease, which affects about 4,000 people a year in the United States. If left untreated, the disease can cause severe organ damage, so early detection is critical. Dr. Aman Godara is an amyloidosis specialist at Huntsman Cancer Institute. Dr. Godara, first of all, what causes this disease?

Dr. Godara: So amyloidosis is a rare and complex disease where a protein misshapes itself, becomes the amyloid protein, and then deposits in different organs of the body causing damage.

Interviewer: So it collects in different organs?

Dr. Godara: Correct.

Interviewer: And for each patient, it could be a different organ. It could manifest itself differently.

Dr. Godara: The type of protein that's behind amyloidosis could affect what type of organ is involved in the body.

Interviewer: And the diagnosis for a lot of patients can be kind of an aha moment because it can manifest in different ways. Somebody could be experiencing some sort of abdominal pain and just really can't track down what it is, and it ends up being amyloidosis. Explain that a little bit more, that aha moment.

Dr. Godara: So the diagnosis of amyloidosis can be very challenging because, as we mentioned, there are several different types of protein that can cause several different manifestations in the body.

So usually, when a patient is being diagnosed with amyloidosis, the diagnosis requires a biopsy of an organ or a tissue in the body that we suspect would be involved with the amyloidosis.

There have been some newer developments in diagnosing amyloidosis, and that's the type of a nuclear scan that we have started using to diagnose a type of amyloidosis that we call as the ATTR amyloidosis.

Depending on the type of organ that's being damaged by the amyloidosis, the symptoms could vary along. If someone's heart is being damaged with amyloidosis, usually patients with heart damage from amyloidosis experience shortness of breath, they experience swelling in their legs, and when they go to see a cardiologist, they are usually identified to have heart failure.

When amyloidosis affects the kidneys, it can cause leakage of protein in the urine, which can manifest itself as a form of urine. Sometimes patients with amyloidosis have involvement of their nerves and that can manifest as painful neuropathy involving their arms or their legs.

Interviewer: So when somebody is experiencing some of those symptoms, they might go to their family doctor, right? And it sounds like this could be a lot of different things. Is it pretty easily misdiagnosed at first?

Dr. Godara: As the diagnosis for amyloidosis is so challenging, misdiagnosis occurs often because the type of symptoms that come along with amyloidosis can occur from other diseases and other conditions.

If a patient is experiencing symptoms of heart failure, that could manifest from a different number of reasons. When patients have kidney dysfunction, that can also occur from a list of different conditions that can damage the kidneys.

So often at the point of care, when these patients are experiencing symptoms that might be related to amyloidosis, the patients end up seeing multiple different types of specialists before they are diagnosed with amyloidosis.

And there are certainly some delays in diagnosis that, on an average, patients take 6 to 12 months to be diagnosed with amyloidosis from the time their symptoms start.

Interviewer: And that's important because time is really important with this diagnosis because the damage to that particular organ keeps occurring.

Dr. Godara: The damage from amyloidosis is progressive damage. So the longer we are taking to diagnose amyloidosis, the more damage would occur in that organ that's being affected by this disease. So timely diagnosis is of utmost importance.

Patients who are diagnosed earlier in the course of disease might have damage to that organ that could be reversible at that point. But ultimately, if we miss a diagnosis, and it takes a really long time for a patient to be diagnosed with amyloidosis, that damage to the kidney or to the heart could end up being an irreversible damage that even treatments would not be able to recover from.

Interviewer: That's really challenging because as a person that has a condition, sometimes you have to go through some multiple diagnoses to figure out what it is. Is there any piece of information that a patient might have that would indicate earlier than later that it is an amyloidosis?

Dr. Godara: So patients who are suspected to have amyloidosis usually require a comprehensive evaluation to identify the type of amyloidosis and to identify the manifestations of it. So the workup depends quite a bit on the type of amyloidosis that we are suspecting.

If we are suspecting lichen amyloidosis, that occurs from the excess of lichens, the first and the foremost test that we perform for those patients are blood and urine testing to identify if they have an excess of lichens, which could ultimately be causing amyloidosis.

If patients have an excess of immunoglobulin lichens in their blood or urine, the next step for those patients is to have a bone marrow biopsy to identify any clone in the bone marrow that might be producing these excess lichens and ultimately the amyloidosis.

The other type of amyloidosis that we commonly see is the ATTR amyloidosis, which occurs off a defect in the transthyretin protein that is being produced by the liver. Patients who have ATTR amyloidosis could either be patients who have developed this type of amyloidosis because of old age or this could also be the type of amyloidosis that runs in the family.

So if we are suspecting a patient with ATTR amyloidosis, and we suspect that they have some cardiac damage from it, there is a nuclear scan of the heart that can help us identify this type of amyloidosis. This scan is called as the PYP scan. Patients who have a more genetic form of ATTR amyloidosis, we have genetic testing that can be done either through a swab or a blood test that can help us identify the hereditary type of ATTR amyloidosis.

Interviewer: How reliable are these tests?

Dr. Godara: When patients undergo evaluation for amyloidosis, the blood and the urine testing usually helps indicate whether or not there is any damage that's occurring to the different organs in the body that we would suspect in a patient with amyloidosis. So they only tell us to a certain extent.

Ultimately, patients would require either a tissue biopsy or an organ biopsy to see that amyloid accumulation happening in that organ to have a confirmation of this type of diagnosis.

Interviewer: Many patients find information on the internet when it comes to this disease that can cause anxiety and apprehension. Why is that?

Dr. Godara: I think the answer to that lies in the complexity of the disease. When patients look up amyloidosis, one thing that they might not know at that time is the type of amyloidosis that we are suspecting that they have.

The workup for amyloidosis, the treatment for amyloidosis, and the prognosis of amyloidosis depends a lot on the type of amyloidosis that they have. So the information on the internet might not be very accurate to the fact to the type of amyloidosis that these patients have. And the generalized information can create a lot of confusion and apprehension.

Interviewer: So somebody could find out they have amyloidosis but not exactly know what kind, go to the internet, start doing some research, and then that can be scary place.

Dr. Godara: I think that's correct. When we see patients who are referred to us for amyloidosis, patients have very limited knowledge as to what this disease entails and why this diagnosis is being suspected. So my job for my patients is to explain to them why the suspicion exists, and what do we need to do to identify whether or not they have amyloidosis.

The information that's available for the patients before they have completed the evaluation could be very generalizable and might not be important to that type of amyloidosis that they have.

Interviewer: And let's talk about treatments for the condition. So you have a positive diagnosis, you know what kind it is, you know what it's impacting, I would imagine that the treatments that you would give depend a lot on the same kinds of things we've talked about up until this point.

Dr. Godara: So as there are so many types of amyloidosis that can inflict damage into the body, the treatment basically depends on the type of amyloidosis. So there have been a lot of developments and a lot of exciting work has been done for patients with amyloidosis in the last few years.

So when we see patients with lichen amyloidosis, just last year, we had a treatment that is specifically developed for patients with lichen amyloidosis that was approved by the FDA. This is a combination of four medications together that not only results in eradication of the clone that causes amyloidosis, but also helps improve the heart, kidneys, or any other organs that might have been damaged as a part of this condition.

So patients who have transthyretin amyloidosis have two different types of treatments available for them. One treatment focuses on stabilizing the transthyretin protein and preventing it from turning into amyloidosis. And the other type of treatment targets the liver and prevents it from producing the transthyretin protein, so that ultimately you cut out the source that would be causing amyloidosis.

So there's been a lot of progress and a lot of other new treatments that are in clinical trials for these two types of amyloidosis. For several other types of amyloidosis, we don't have any treatments available yet.

Interviewer: And for those patients, is it just managing the disease best you can, managing the symptoms? What's the strategy?

Dr. Godara: So patients who have types of amyloidosis that we don't have treatments for, our focus remains on the organs that are afflicted from this disease. We try to support the organs that are damaged as a part of amyloidosis, and sometimes these patients will end up receiving a kidney transplant, or a liver transplant, or a heart transplant depending on what type of organ was damaged, irrespective of whether or not we have any treatments available for that type of amyloidosis.

The first and the foremost thing for patients with amyloidosis is to identify these patients at the earliest, because the sooner we take to diagnose this condition, the sooner we can try to reverse this process.

Delays in diagnosis can ultimately hurt the patient, so we have to create awareness at all levels of our healthcare system to identify these patients who might or might not have amyloidosis so that they undergo the appropriate workup and have a confirmation on whether or not they have this condition.

So we need to create awareness not just at the level of the primary care doctor, but also the specialists that our patients see. And at the same time, we also have to increase the awareness about this rare disease with our patients, so that if they have one of the symptoms that we relate with this condition, our patients can come to us and be evaluated for the suspicion.

The one thing that patients with amyloidosis require is a comprehensive evaluation. So when we suspect amyloidosis in a patient, our patients require a multidisciplinary team to not just help identify whether or not they have amyloidosis, but also once the diagnosis has been confirmed, we can focus not just on the cause of what's causing the amyloidosis but also help support the organs that are damaged as a part of this disease.

So at the Amyloidosis Program at Huntsman Cancer Institute, our patients receive care under a team of specialists that includes representation from cardiology, nephrology, and neurology to provide the best possible care that our patients need.