Symptoms Spotlight: Blood Clots with Abigail Johnston and Melanie Sisk

In this episode of Symptoms Spotlights, hosts Abigail Johnston and Melanie Sisk, a metastatic breast cancer patient and a registered nurse living with MBC, dive deep into one of the most serious yet underdiscussed risks facing cancer patients: blood clots (thrombus).

Melanie breaks down the science behind how blood clots form, where they can occur in the body including the lungs, brain, heart, and legs, and what terms like DVT, pulmonary embolism, and ischemic stroke actually mean for patients. Abigail shares her own experience being diagnosed with two blood clots in her heart, discovered during a routine echocardiogram while on Enhertu, and what she wishes she had known earlier.

In this episode, you'll learn why cancer patients face a 3 to 4 times higher risk of blood clots than the general population, how treatments like tamoxifen, CDK4/6 inhibitors, and chemotherapy increase clot risk, the signs and symptoms to watch for and when to seek immediate care, how ports can be an unexpected risk factor, practical prevention tips including compression stockings and movement breaks during travel, and when to ask for a hematology specialist rather than relying solely on your oncologist.

Whether you're newly diagnosed or years into your MBC journey, this episode will help you understand your risk, advocate for yourself, and know when something feels off.

Nothing shared in this episode is medical advice. Always consult your healthcare team.

Thanks for listening. If you enjoyed the episode, subscribe and leave a review — it really helps. Follow us on social media @livefromstage4 and visit our website at www.livefromstage4.org for show notes and links.

 Your support helps us continue to share important stories and advocate for those living with metastatic breast cancer.

Until next time, take care and keep pushing for progress.

Transcript

SPEAKER_00 0:00

Hi, I'm Melanie Sisk.

SPEAKER_01 0:02

And I'm Abigail Dunstan. And we're here to talk about symptom management. This series is called Symptom Spotlights, and we will be regularly bringing information to you on various symptoms caused by cancer or the treatment for cancer and how different patients are managing them. We learned so much from each other. What a great example of how we are stronger together.

SPEAKER_00 0:27

And we are so excited to bring this hard-won peer wisdom directly to patients. And please let us know if there is a symptom you want us to cover. And now let's get to it. Abigail, what symptom are we sharing in the spotlight today?

SPEAKER_01 0:48

So in today's Symptom Spotlight, we are going to talk about something that many of us may experience during our diagnosis of metastatic breast cancer. And that is blood clots or thrombus. And I am going to be interviewing Melanie with her medical background to give us some foundational understanding of thrombus, or is it thrombuses? I don't know what the plural is of a blood clot or the scientific word for blood clot. So, Melanie, would you give us a primer, give us some of that foundational knowledge on what might we see on a report or what do we need to know about blood clots?

SPEAKER_00 1:29

Cancer patients, we are at a higher risk than the normal population because we have cancer. And then, of course, cancer treatment. Thrombus is a blood clot, and it can happen anywhere in the body. I know a lot of people have probably heard of DVTs, which is a deep vein thrombosis, which can happen in your lower legs. So if you know anybody that's hospitalized or immobile, they always put those sequential compression devices on their lower legs while they're laying in the hospital bed, and that's to help compress and keep that blood flowing from your lower limbs back up to your heart. Because the way the whole system works, your circulatory system, your blood, it is all over arteries and veins, all over your body, and they get oxygen from your lungs, and then they carry that oxygen to all the cells in your body. But when you have a blood clot, then that's blocking that oxygenated blood from going to your cells or blocking the deoxygenated blood from going back to your lungs. So definitely that's something very important that you should be on the lookout for. And if you have a scan that says thrombus or embolism or something like that, then yes, you have a blood clot. And it's very serious. It's not like having a little clot on your skin because when you cut your cell, your blood is supposed to clot and make that scab. It's part of the healing process. But you don't want the clots inside of your body blocking that oxygenated blood from your cells or, like I said, going back to your heart. So it is very important.

SPEAKER_01 3:15

Blood clots can break apart and actually send pieces to other parts of the body, right? What is it called when it's in the lungs?

SPEAKER_00 3:24

When it's in the lungs, they typically call it a pulmonary embolism and like RPE, you might hear them talk about. And that is very dangerous. It can cause death very suddenly. If it's in your lungs, you may have a little bit of shortness of breath. You may have some sharp pain. I'm sure there's other signs and symptoms, but the main thing is it's blocking that blood flow and it's blocking the oxygenation from change in your lungs. So that can cause pain, can cause shortness of breath. If you have a blood clot in your brain, that is what we call a stroke. If it's a bleeding clot, it's a hemorrhagic stroke. If it's a clot clot, it's an ischemic stroke. So what it's doing is stopping that blood flow to part of the brain. And so if it doesn't have that oxygen, it can die. So part of your brain can actually die. But if you get treatment pretty quickly, then it can recover. But there's only a certain time frame there. If there's a clot in your heart, that's a heart attack. And that's going to cause some pain. And there again, it can cause that tissue to die if you don't get treatment right away. And your legs with a DVT, deep vein thrombosis, that can cause pain. It can cause redness. But you know your body. So if you all of a sudden are short of breath or you're starting to get confused, and especially when it comes to your brain, like with a stroke, there's all these signs and symptoms of that. But you know your body. So if something doesn't feel right, if you have some acute pain that just comes out of nowhere, you should definitely seek out medical attention because we, as cancer patients, we are at an increased risk. And all of these things are so dangerous. And there's a lot of different signs and symptoms of just blood clots in general.

SPEAKER_01 5:19

I was just reading an article which we'll include in the show notes that actually put the risk for people with breast cancer three to four times a higher risk than people of the same age, same demographics without cancer. And so when we're talking about three and fourfold risk, that that's pretty significant. But Melanie, isn't there a difference between clots that are caused by some kind of injury or traumatic event versus blood clots that are formed because of some kind of underlying systemic issue?

SPEAKER_00 5:54

Yes, that's true. When you have some kind of injury or like even breaking a bone, that gives you an increased risk for having a blood clot due to the injury that you had. There's other kinds of injuries that you can have that put you at risk. Any kind of trauma can cause that. And then of course, there's the cancer patients and the cancer treatment and the different underlying comorbidities that people might have that puts you at another risk factor. If you have surgery on anything, then yeah, that puts you at a greater risk. Your immobility, like if you're in the hospital and you're laid up, that puts you at a risk. There's definitely hormonal factors. We know if you're on hormone replacement therapy, which most of us are not, but that puts you at increased risk. We just talked about earlier before this podcast about tamoxen puts you at an increased risk. CDK-4-6 inhibitors increase your risk. Chemotherapy. So there's so many things like chronic medical illnesses that you may have. There's underlying blood clotting diseases, inflammatory conditions. There's a lot of different things. Obesity and your lifestyle. If we don't move our body as much, there's reasons why some of us don't move our body. We have pain, and when we move our body more, it hurts. So it's like a fine line. But yeah, those all can contribute to your risk factor of having blood clots. There's genetic risk factors, family history. So it's just good to know if there's a history in your family of blood clots, so that way you can be more aware of it and look for the signs and symptoms. And that way you can seek out medical attention if it happens to you.

SPEAKER_01 7:36

I think one of the things that I realized when I was diagnosed with a blood clot, that there wasn't a whole lot of information at the beginning of my experience with breast cancer. It wasn't like they said, hey, your risk is so much higher. Here are the things to look for. Certainly they were asking lots of questions about how I was feeling on different lines of treatment, but I maybe wasn't aware until I was diagnosed with a blood clot of the risk and of the risk factors. And so looking back, you know, I always try to look back and think, what could I have done differently or what do I think I should have done differently? And I do wish that somebody had gone over some of those things with me in a way that I knew what symptoms they were looking for were connected to the risk for blood clots and maybe talked more about my specific risk of blood clots because it was a really big surprise when I had my diagnosis. So anyway, just looking back and thinking if you're at the beginning of the experience, really trying to dig into your personal risk factors, what personally you should be looking for. And every time I'm in the hospital and I have those massager things on my legs, I think we should buy these because they're really nice.

SPEAKER_00 8:57

Speaking of, I saw something like that in Costco the other day. Did you? Yes, but it was rather costly. But I thought, ooh, that would feel good having your legs massage. I have not been in the hospital that much myself, thank goodness. So I've not had to wear them that much. But as a nurse, and I worked in the hospital and specifically worked in surgery for several years. And so all of our surgical patients, we always put those sequential compression devices on their legs, always before intubation, and we left them on until the patient was extubated because the more increased factor of having a blood clot during surgery is during intubation or extubation for certain surgeries. So that's something that as a nurse I always made sure for my patient. And of course, if you're on the floor in the hospital in one of the units, you're gonna have them on because you're immobile. If you're taking a long car drive, think about when you're sitting in the car, your lower legs are just dangling. So you're not moving, you're immobile. So it's always a good idea. And and and they would always tell pregnant women when you're in the car, stop every two hours, get out and walk around. If you're traveling, you need to stop every two hours at the very least. And get out and walk around. Move those legs, let that blood flow because that's gonna help with your risk of having a blood clot. So, Abigail, when you were diagnosed with a blood clot, where exactly was your clot? How did you find it? And did you have any signs and symptoms yourself that you identified?

SPEAKER_01 10:38

Great questions. Let me just first say that compression stockings too are important for traveling, especially when we're flying. In fact, even after my diagnosis, my cardiologist wanted me to make sure that I was doing compression on all four limbs, so on my arms as well. So just something that you can do that can be helpful. When I was on TDXD or NHER2, I was getting regular echocardiograms because there is some cardiac toxicity that comes with NHER2. And I was getting an echo and I didn't even realize what was going on. The tech kept me really distracted. But the two blood clots that I had were in my heart, and they were discovered in an echocardiogram. At the end, the tech had walked out and said, I'm just gonna check in with the doctor to see if you need to talk to the doctor. And that was something that had never happened before. Again, he kept me very distracted. Did good. Did a good job. Exactly. So I had the conversation with my doctor, and while we cannot know for sure why there were blood clots in my heart, one of them was stuck to the end of my port tube. So when you have a port, there is the tube that extends and what's directing everything to the appropriate place. But the theory is that it was not measured correctly. And so it extended too far into my left ventricle and was actually striking the wall of my heart. And this is apparently, I discovered, a known potential complication of having a port. Also, having anything foreign in your body, like a port, is also an increased risk of blood clots, something that I'm not sure anybody ever told me, or at least I don't remember. And so for me, the theory was because the end of the tube was striking the wall of my heart, that it was traumatic-induced blood clot, not some sort of systemic issue, which makes me feel a little bit more comfortable about potentially it happening again. The clots were very tiny when they were found and they have since resolved. But there was a lot of surveillance and they were watching me very closely with additional echocardiograms to look at and to measure how big the clots were. And of course, I was immediately prescribed Eloquis, which is an anti-coagulation medication. And so it has been a little bit of a baptism by fire, right? Didn't have the preparation so much, but I've understood a whole lot more now about all these different risk factors. And so the line that my doctors have taken is that since it was traumatically induced, so long as I don't have another pork candula that's hitting the wall of my heart, theoretically I wouldn't have another one. But because now I understand my risk factors and because it's happened at least once, the default that we've gone to is to stay on a maintenance dose of eloquence. Again, just weighing those risks and benefits, right? Trying to figure out what's going to be the best thing, but my risk is certainly higher now that it's actually happened, from what I understand.

SPEAKER_00 14:06

If you're not in the medical field and you don't know a lot of these things, you're not gonna know the questions to ask anyway. There's nothing that you could have done to help educate yourself more to ask the right questions. And I think it all comes with the personalized medicine. I feel like the healthcare system is so rushed and they have such limited time. It's really hard for the medical team to really assess the knowledge base of every patient and then therefore do the education for every patient for their specific risk factors. And I think it could be a lack of time, it could be a lack of the healthcare team. But as a registered nurse, we did a lot of education with the patient. And they're again, they're rushed. It's another reason that I think our healthcare system is broken. And it's hard to teach everybody everything. Some patients don't want to know the details, they don't want to know about the circulatory system and what it does, and they don't care about that. They only want to know what affects them. And there are a certain subset of patients that if you give them every single risk factor, then they're gonna have every single one of those. It's in their mind and they're scared, and we're all different. That could be fixed more in personalized medicine and really educate people. Talking about your port, we did a lot of those port insertion. It's typically inserted in the subclavian vein, the internal jugular vein, or the superior vena cava. It's not supposed to go in the heart, the tip is supposed to lie just above the heart.

SPEAKER_01 15:48

They could see it. They even showed me how you could see it on the echocardiogram. But one other thing that happened that I realized was potentially a complication, maybe, was that even though every oncologist I've seen, you see that they're oncology slash hematology, right? And so theoretically, our medical oncologists have gotten training in hematology, which is, of course, the specialty that would handle something like a blood clot. But I realized that many oncologists slash hematologists get so specialized into oncology that as I'm asking very specific questions about what I can expect because of the blood clot, that was something that my medical oncologist was not comfortable with answering. And so I ended up actually seeing an oncologist slash hematologist that only focused on hematology. It seems to me at this point that sometimes the oncologists stay, both an oncologist and a hematologist, depending on their practice, but then sometimes they branch off into either direction. And so that was very illuminating to me as we started asking questions that I needed a different specialist, at least to answer those particular questions that I was having. And so that was really helpful to find out. Although, again, might have been helpful to know from the beginning.

SPEAKER_00 17:19

Well, I say kudos for the doctor for not answering those questions because sometimes they can answer questions to the best of their ability or their knowledge base, and it's really not correct information. So it's good to have doctors that admit that they don't know specific things and steer you into the right direction. I say kudos. That's a good doctor.

SPEAKER_01 17:45

Yes, recognizing your lane or your body of knowledge and recognizing when you're outside of that, I think is sometimes hard for people, not just doctors, people. Exactly. I think it's so important to talk about these things, not so that we're scared or lying awake at night worried about a blood platforming, but so that we know where we can influence things, right? The watching about it while traveling, getting up to move, thinking about compression stockings, maybe noticing our bodies when something is inflamed or swollen. They're always checking our ankles at all these appointments, right? To make sure that there's not fluid building up and that sort of thing. So really getting to the point where we're thinking about various aspects of our body and speaking up when something is different very exactly. I didn't have any symptoms. I had no idea that the clots were there.

SPEAKER_00 18:38

One thing I just wanted to add, because it was a lot of great information. We know our bodies. And if you have to question yourself and say, should I mention this symptom or a side effect that I'm having to my healthcare team, then your answer is yes, you should. It's always better to be safer than sorry, and you're talking about your health. So even if you think it's not that important, you still mention it to them.

SPEAKER_01 19:05

That is a great line to draw. Thank you, Melanie.

SPEAKER_00 19:08

We hope that you have enjoyed this conversation as much as we did, and you learned a little bit along the way.

SPEAKER_01 19:16

Please don't take any of what we've shared today as medical advice. If you have a question about a product or if an intervention is going to be safe for you, we encourage you to engage with your team. You will find links to all of the products and interventions we talked about today in the show notes. And you could bring something like that with you to an appointment with your team if you think that's helpful.

SPEAKER_00 19:37

Yes, and we definitely want to hear from you. Did you enjoy today's spotlight? Is there another product you have had success with? Is there another system you want us to talk about? Engage with us, and you may find yourself receiving samples.

SPEAKER_01 19:53

Until next time, be well and keep thriving.