Symptoms Spotlight: Ascites with Abigail Johnston and Melanie Sisk

In this Symptoms Spotlight episode, Abigail Johnston and Melanie Sisk are joined by Dr. Jill Tirabassi to talk about ascites, the buildup of fluid in the abdominal cavity that can occur with metastatic breast cancer and liver disease. Dr. Jill shares both her medical expertise and her personal experience, explaining what ascites is, why it happens, and how it shows up on scans.

The conversation covers symptoms to watch for, including abdominal pressure and pain, abdominal distension, shortness of breath, back pain, leg swelling, and itching. Dr. Jill describes her own paracentesis, a procedure to drain the fluid, and how life changing the relief was, along with other options like diuretics, dietary changes, and drainage ports that can be managed at home.

The hosts also discuss when to bring specialists like hepatologists or interventional radiologists onto your care team, and why ascites is not always caused by cancer itself. Sometimes it is the treatment, and switching therapies can reverse it entirely.

Above all, this episode is a reminder to advocate for yourself. Your quality of life matters, and pushing for interventions that help you feel better is always worth the conversation with your care team.

This is general information, not medical advice. Always talk with your own doctor about your specific situation.

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 0:10

If you are putting the technical things, we'll come to life from stage four, where NBC takes center stage and to talk to experts for inspiring stories, bring down science and find the spotlight on what matters most. Because when it comes down to it, the spot, for us and by us, is all about us.

SPEAKER_04 0:36

Hi, I'm Abigail Johnston.

SPEAKER_03 0:39

Hi, I'm Melanie Sisk.

SPEAKER_04 0:42

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

SPEAKER_03 1:03

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 would like us to talk about. And now let's get to it. Abigail, what symptom are we shining the spotlight on today?

SPEAKER_04 1:20

Today we are going to be talking about ascites. And Melanie, would you like to introduce our guest?

SPEAKER_03 1:27

Sure. We have the privilege of having Jill Terabasi, Dr. Jill, with us today. And she's gonna uh help us learn a little bit about ascites and what we can do about it. Hey Jill. Hi. Nice to see you. Thanks for joining us today and talking about this very kind of hard subject of ascites. And this is something you've had personal experience with, right?

SPEAKER_02 1:52

Unfortunately, yes. This one is a little heavier than some of our other ones for me, honestly. Ascites is the buildup of fluid in our abdominal cavity. There's a fancy word for it, peritoneal fluid. It's really just the pouch that surrounds all of our abdominal organs and protects us. And there's a few reasons why we can fill up with fluid. In the case of metastatic breast cancer or liver disease, that generally is because the liver isn't doing well. It's one of the more common causes of it. And it can lead to a lot of discomfort and pain. There's some times where we can reverse it, there's sometimes where we can't. So there's a lot to unpack with this one.

SPEAKER_04 2:31

Can you get ascites inside organs as well?

SPEAKER_02 2:36

No, the term asites really refers to filling up of that peritoneal cavity, that sec around all of the organs. You're absolutely right. There's different fluid buildup in organs, but it doesn't carry that same name.

SPEAKER_04 2:51

Okay. Terminology is always important. And so when there is ascites, does that show up on a scan?

SPEAKER_02 2:59

Usually, yes. You might read in a scan physiologic fluid, which just means a little bit of normal fluid if you're looking at a CT abdomen pelvis, for example. Maybe there might be a little bit of ascites missing that we really can't just call ascites. But once enough has built up, you can see it.

SPEAKER_04 3:16

Okay. And are there usually symptoms outside of it showing up on a scan?

SPEAKER_02 3:22

Initially, if there's just a little bit, people might not notice it, honestly. Once we get to a higher level of fluid, people can generally feel pressure or pain, or sometimes they can even feel what's called the fluid wave where that fluid is moving through the abdomen. I would say it's one of those things where we all have a different level of degree of noticing what's going on in our bodies. If someone has a significant amount of fluid, it can lead to a distended abdomen. I know of people who have been asked if they were pregnant because their belly can really distend out from the fluid, which is unfortunate for everyone involved.

SPEAKER_03 3:57

Does the fluid cause itching in the abdomen for some people who have the ascites?

SPEAKER_02 4:05

I think I've heard of that. And I think anytime our skin might be really stretched out too, that can lead to sensations that some people might feel is itching.

SPEAKER_03 4:13

Yeah. How about shortness of breath? Is that something that you experience?

SPEAKER_02 4:17

Yes, that is one of the more frustrating things when I experienced ascites. I consider myself a pretty athletic person and I was getting winded just trying to get upstairs. If you get enough of a fluid buildup, your lungs are not going to be able to expand quite as much as you want. And so it can really lead to shortness of breath in in people when there's a lot of fluid there.

SPEAKER_03 4:37

Do you know of any other symptoms that patients could look for that they may experience with this that they can talk to their doctor about?

SPEAKER_02 4:46

Once there's a lot of fluid in there, the belly pain, the distension, as you just mentioned, the shortness of breath become pretty clear and evident. It could present as back pain too, depending on where the fluid's kind of shifted, or perhaps when you're sleeping, you might feel it coming to the back more. Sometimes there can be so much fluid backup and pressure in the belly that it can lead to fluid backup other places. So people actually might notice some swelling in their legs or even some of the veins in their necks becoming a little more distended, too, enlarged or more obvious appearing. There's a term everyone I think has heard of hypertension, high blood pressure. But when we have a lot of either cancer in our liver or our livers maybe have cirrhosis or pseudocerrosis from various reasons, that it actually causes what's called portal hypertension. And that's really increased blood pressure in the liver system, and that can lead to that fluid back up in other places too. So it's always something just to keep an eye out. If you see your doctor checking your sock line or your ankles or your legs, you know, they're looking for signs of fluid back up in other places.

SPEAKER_03 5:51

Yeah, this is a very scary subject. I was talking to Jill earlier, and me being a nurse, when I learned in nursing school, ascites was usually in-stage liver disease, one of the symptoms that comes with that. And it's very scary. And I think it's significant to know that in metacitic breast cancer, it can be reversible in some patients. So I think in your case it was correct, Jill?

SPEAKER_02 6:16

Yes. Once we realized that the treatment line I was on was not working, we were able to switch to a different one. And thankfully that helped decrease the cancer burden in my liver. I also did have one parasitesis, and that's a fancy word for saying taking the fluid off. So literally where we stick a needle into your abdomen to draw fat fluid. And that was, oh my goodness, just walking out after that procedure that day, because that tends to be one that can be done without much sedation or anything. Usually you go home the same day. It was just life-changing in terms of pain and breathing for me. There's some cases of people who might have more advanced disease or the liver's not doing as well where they can come back for repeated paracentesis or repeated fluid draws, or even have a shunt put in to help drain it as needed, to help breathing, comfort, pain relief. There's definitely a few things that we can do from that aspect. When you drain the ascites, are they able to test the cells of the liquid? They can. They can test it for signs of infection because that fluid can get infected. They can test it for signs of cancer. Actually, even just looking at the fluid itself, we can sometimes see if it's more inflammatory versus just fluid that had nowhere else to go that might be perhaps more straw-colored or even look like beer. And that can help point us in directions, maybe if we're not quite sure what's going on. And you can send it off to see if it also will grow any signs of infection, too.

SPEAKER_04 7:46

So potentially a source of some information if you can test that fluid. Other than draining it, are there any other treatments? Like, does anybody get diuretics or any other type of medical intervention?

SPEAKER_02 8:01

Yeah, and I think this is where every specific person needs to talk to their doctor about their treatment plan. This is not medical advice, but there are things like diuretics or the more colloquial term water pills that help people remove the fluid. In certain cases, like with people with end-stage liver disease, we might recommend certain diets that might be fluid restriction, where you shouldn't drink quite as much to try to prevent it, or sodium restriction, meaning salt restriction in your diet. From a patient standpoint, I looked up those things to see if in metastatic breast cancer, if we really have done those studies well to recommend those things. And I didn't feel super confident about the studies that I've seen. So definitely something to ask your doctor about whether or not those type of interventions really have been shown to be helpful. But those are the typical things that can happen. And there's some other stuff too that's less commonly used. Okay.

SPEAKER_04 8:54

So if someone is diagnosed with SIDs, are there other healthcare workers or other professionals, like, would it be important to have a doctor who specializes in the liver at that point? Or is there another specialty that would be helpful?

SPEAKER_02 9:13

A hepatologist is a doctor that specializes in the liver. And I can say I've asked around a bit, and I don't know that our oncologists are always super thrilled to get them involved or think that they're honestly that helpful, because I think our oncologists are like, well, if I treat the cancer, then your liver will be fine. I think it's one of those things where maybe we have to be a little bit persistent or whatnot if you think that could be helpful. Another member of the team being perhaps intervention or radiology or some sort of proceduralist, someone who might do something like the fluid draw, the paracentesis as being a part of the team, too. Honestly, a lot of primary care docs treat end stage liver disease. And so that might be something that actually is comfortable for them to be helpful with. I think it really is very situation dependent and medicine is practiced different all over this country, too. And so what happens up here in New York for me versus North Carolina or Florida for you guys will be different too.

SPEAKER_04 10:08

Yeah. But a good question to bring up if ocites is something that's been diagnosed, if the patient could have that discussion with their medical oncologist, who else would be helpful in this discussion? Anyway, always important to ask as many questions as makes you feel comfortable with whatever interventions are being recommended or not in the cancer experience. And so, Jill, was there a certain level after which they would recommend a paracentesis? Did the pocket of a CITES have to get to a certain level before they would drain it?

SPEAKER_02 10:43

Well, funny you asked that, Abigail. I recognize that I'm not a normal patient. I'm a pain in the butt because I'm a doctor and I probably annoy my physicians a lot. I knew there was a lot of fluid in me, and I was very uncomfortable. And for me, not being able to exercise was the number one thing I think that helps me in my cancer treatments more than anything. And I was at that point. And so I remember my oncologist looking at me and being like, I don't really think there's a lot of fluid there. I don't think there's that much to drain. And I was like, send me to the interventional radiologist now, please. And honestly, we got about two liters, like two big Coke bottles of fluid off that I guess I was hiding so well. And so I think that there's a line between what we are comfortable as patients and enduring, as well as what is truly helpful to minimize badness happening to our body too. And I am of the vein of let your doctor know as soon as you need something and really push for it if you know that that it's something that will help you. Unfortunately, it's being our own advocates loud and clear again at times.

SPEAKER_04 11:47

An important reminder that there may be these lines of when they might intervene or not, but your quality of life and how you're feeling is part of that equation. Exactly how it's part of the equation might be different for everybody, but important to make sure that you're bringing those things up in those discussions. And I know that there are people who get very concerned when they actually put in a port to where the draining could be done. Sometimes people have their spouses get trained and are able to do that at home with the proper sanitizing and making sure that everything is clean and all of that, because it's really easy to get an infection when you're doing something like that. But from a quality of life perspective, that could be a game changer for people to be able to do things at home. So always good to ask what the possibilities are, what the options are with each intervention. Did you have something to add, Melanie?

SPEAKER_03 12:41

Yes, I just wanted to add, I knew a friend personally who experienced ascites, and it wasn't the cancer in her liver, it was actually the treatment that she was on. So they just simply changed her treatment, and then her liver functions went up, and then she no longer had the excites anymore. Not to scare everyone who hears the term ascites, it's not always the cancer. Sometimes it could just be the treatment causing it.

SPEAKER_02 13:06

Yes, that's a really good point. A lot of our treatments can be toxic. And if it's something that's really hurting your liver, it can cause that too. So very important point. Yeah.

SPEAKER_04 13:16

Just underscores the importance of having an open dialogue with your team and talking through all of the options, whatever it is that's going to make you more comfortable as well as your body function better. So thank you, Jill, for joining us today and explaining something that can be a little daunting. And hopefully we've got some information people can take back to their team. So thank you very much for your time today.

SPEAKER_03 13:41

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

SPEAKER_04 13:56

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 safe for you, we encourage you to engage with your team. You will find links to each of the products and the interventions we talked about today in the show notes.

SPEAKER_03 14:12

We want to hear from you. Did you enjoy today's spotlight? Is there another product that you have had success with? Is there another symptom you would like to hear us talk about? Engage with us, and you may find yourself receiving samples.

SPEAKER_04 14:29

This episode was produced by me, Abigail Johnston, and my dear friend Melanie Zisk. Until next time, be well and keep thriving.