[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Welcome to another powerful episode of the Komen Health Equity Revolution podcast series. Each month we invite patients, community organizations, healthcare partners, researchers, and policy advocates to spark conversations about strategies and solutions that drive the health equity revolution forward for multiple populations experiencing breast health inequities.
One in five women who have had breast cancer surgery and treatment are at risk for developing a potentially detrimental side effect of breast cancer: breast cancer related lymphedema, a condition in which lymphatic fluid gets trapped in lymph vessels and causes chronic arm swelling, leading to reduced quality of life for many.
We’re joined today by Tina Tsan, a certified lymphedema therapist and the founder of Harmony Lymphatics. Tina is dedicated to providing the highest quality of care for her patients, and is excited to be here today to share her wealth of knowledge and expertise about managing lymphedema during and after breast cancer treatment. Tina, welcome to the show.
[00:01:27] Tina Tsan: Thank you for having me.
[00:01:29] Adam Walker: Well, I’m so happy to talk to you about this. I think we’ve talked about this once or twice in the show, but not enough, and so I’m glad you’re going to bring your expertise to the table. So let’s start. Can you explain to our listeners what lymphedema is? And who’s at risk for developing breast cancer related lymphedema?
[00:01:45] Tina Tsan: Yeah, lymphedema is a chronic, progressive disease where the anatomy of the limb system gets impaired. And with breast cancer patients, either radiation and or lymph node removal, the two together puts a patient at a higher risk of developing lymphedema where the anatomy gets impaired.
And the lymph system fails to perform its duty of removing proteins from the tissue. And this in turn attracts fluid. And then you get something called a protein rich swelling that happens in your tissue. And it just progressively gets worse over time. And your limb just grows and grows.
Unless you get managed compression and other forms of therapies that we’ll discuss throughout this podcast.
[00:02:33] Adam Walker: Okay. And so for someone that’s completed treatment or is going through breast cancer treatment, like what are some signs and symptoms, that are related to breast cancer or lymphedema? What should they watch out for?
[00:02:43] Tina Tsan: Yeah, the most obvious sign and symptoms is swelling. You’ll see your limbs get bigger. And initially it might be subtle, like your wedding ring might not fit like it used to, or you might notice maybe your finger is getting a little bit bigger on the effective side compared to the unaffected side.
So you might notice maybe one of your arms is getting bigger than the other. And, and it just grows over time, month by month until it becomes even more visually evident that it’s undeniably bigger. One arm is bigger than the other.
[00:03:14] Adam Walker: Okay. And let’s talk about the impact. So what are some of the impacts that chronic breast cancer related lymphedema can have on breast cancer survivors and how does it affect their overall quality of life?
[00:03:25] Tina Tsan: Yeah. The impact is pretty dynamic and detrimental. Can you imagine a breast cancer patient, their journey from initial diagnosis to treatment and after going through treating cancer and then getting maybe reconstructive surgery, you come out of all of that, long journey. Bam, you have lymphedema.
So the by product of that is having to manage something lifelong that’s chronic and progressive as a constant reminder of your journey, with cancer and it impacts each patient differently. A consistency that I’ve noticed is that they’ve had to adjust in terms of having to wear these compression sleeves on a daily basis to manage swelling.
How to pair it with clothes. How are you going to go to work and either if your workplace environment, you haven’t explained to your coworkers why you have to wear a sleeve every day, how to match it with clothing so that you can still be somewhat presentable and fashionable, but also not feeling shameful of having this swelling.
From that to, being able to perform your activities of daily living. If the swelling is managed and containable, you can still go about your activities of daily living, but when it becomes unmanageable to a point where the limb is really big, then your daily activities impaired, and then you can face depression and anxiety.
[00:04:55] Adam Walker: And you mentioned, managing this, how can talk about how important it is to manage it and what can happen if you don’t manage it?
[00:05:02] Tina Tsan: Yeah, that’s a good question. It’s very important to manage it, because lymphedema when diagnosed and when the patient is given tools, self care tools and taught how to manage lymphedema, prevent, contain the swelling and prevent it from growing, then what we’re doing as therapists is preventing the patient from becoming a disabled.
And that’s how important it is to teach a patient how to self manage. So it contains the swelling so that it’s at a size where it’s manageable, they can still live their life. And doesn’t grow out of control to a size where now, they can’t do simple tasks like, using their hands to type the computer or comb their hair or play with their kids.
Things like that.
[00:05:51] Adam Walker: All right. So you’re a lymphedema specialist. You support people that are struggling with this. How do people find you? Did they search you on the internet? Are they referred by a doctor? How does somebody get your support or someone like you?
[00:06:04] Tina Tsan: Both? I’m actually pretty active on social media. I make short, one minute educational clips and that’s actually how you guys found me. I think you came upon one of my clips and reached out and email. So you can find me that way or you can find me the old fashioned way on Google. I have Google business listing on Harmony Lymphatics. And then a lot of patients also find me by their doctor, their physician referred.
Once they are diagnosed by their physician, the physician will then give them a referral for a therapist that they can consult with for long term management.
[00:06:41] Adam Walker: Okay. So I’m curious, you’re doing this work, you’re creating content about this work, what drew you to this specific specialty if you don’t mind me asking?
[00:06:51] Tina Tsan: Yeah, that’s a good question. So lymphedema wasn’t really well known in the healthcare field. Lymphatics wasn’t really quite discussed in medical school. It’s probably like a system that gets mentioned maybe once or twice and that’s about it. That’s about as much of attention as a limb system gets.
So the disease lymphedema wasn’t really well known by physicians 10 years ago, 15 years ago. And those of us who are treating it, we tend to be one of the few in the city. So we’re like a rare breed, a rare, small number of healthcare providers who do treat lymphedema. And, it came on my map when I went into business for myself and I was an acupuncturist treating, physical injuries at the time of repeating injuries. And one day I got a call from a hospice of all places. They were discharging this woman, she was getting medical attention in New York and she was placed in hospice care. So they flew her back home to Los Angeles.
And I got a call hospice, New York saying, “We have this woman and she’s got two weeks left and she have chronic lymphedema of lower extremities. She needs palliative care. She needs, this is end of life care. Something just to keep her comfortable. Will you be comfortable treating this patient to help her, stay in a level of comfort during the last two weeks of her life?
Yeah, sure. Absolutely. I’m happy to help this woman.” And when I showed up, this was the first time I saw lymphedema hospice told me it was swelling. It was a dema of the limbs. We think it’s lymphedema, but this is something you can’t cure because she’s got two weeks left anyways, but we just like you to help her stay comfortable.
So when I showed up, that was the first time I ever saw lymphedema. And she had terrible swelling, both of her legs. It was just so puffy, so blown out. She had a cancer of the ovaries and it had metastasized and took over her lungs and her kidneys. So I was there during her last two weeks to keep her comfortable, to help her pass on.
And when I saw lymphedema and her husband told me, we looked all over, we went on Google, we looked. And search for lymphedema therapists in L. A. that might be a helper. And you were one of two people who showed up on the Google search result. And it blew my mind because L. A. is such a big county. Such a big city and such a big county. And we have so many providers in L. A. How can I be only one of two therapists who can help this woman? So then I thought, how can I be a bigger impact? That’s when I took to social media and started making it a one minute education.
[00:09:50] Adam Walker: Wow. That’s so great. That’s so great. It’s so great that you’re able to help and support people like that. So encouraging. So then what did you, I think you mentioned compression, is that the ideal treatment for lymphedema? And it is that kind of typically the same for everyone, or tell us more about that.
[00:10:08] Tina Tsan: Yeah, so the standard of care, the gold standard for treating lymphedema is a complete decongestive therapy and involves four components. Medical grade compression garment would be one of the aspects. The patient would be fitted into compression garment that they would wear daily for the rest of their life.
Therapeutic exercises because exercise improves circulation. You don’t want to be immobile. Movement helps with circulation, we all know that, skin care to prevent infection. The patient will be taught skin care tips, self care tips, because really chronic lymphedema at some point, the swelling is no longer contained and starts oozing out of the skin and this is called lymphoria.
So now you have a patient that’s more at risk of getting cellulitis, skin infection. So, I teach the patient skin care tips on how to manage the swelling and prevent skin infection. And the other one is, what is the other one? You have compression, you have exercises, skin care, and think that’s it.
[00:11:20] Adam Walker: Yeah. And so are these treatments things that people can do at home on their own? Or do they need to come into an office? Or is it maybe a little bit of both?
[00:11:30] Tina Tsan: Yeah, so it’s a little bit of both. Refer the patient to their doctor to ask them if you can please write me a prescription for compression pumps.
So this is a tool the patient can use at home instead of having to drive to the clinic to use the pump at the clinic. Most of these patients can receive a prescription from their physician to for their insurance to disperse them a pump that they can use at home. And the compression is going to be a little bit different depending on the patient.
There’s so many different ways to compress a patient and it’s going to be a tricky balance between finding something that’s therapeutic and also relatively comfortable and somewhat still fashionable for the patient to wear on a daily basis. There’s so many options out there. There’s lots of cool companies that come up with things that can appeal to everybody’s preference. You have your good old fashioned, arm compression sleeves here and your standard brown, and then companies have come out with like lots of cool different colors, depending on different outfits that you’re wearing.
[00:12:39] Adam Walker: Nice. Look at all those colors. Okay, I love it.
[00:12:42] Tina Tsan: There’s also, prints and patterns. I don’t have them on me, but there’s, prints and pattern like flowers and dragons and what not. So you can make this fun. It doesn’t have to be compression, imprisonment and something boring. Unless that’s your taste, you have lots of different options to choose from, colors and prints. It can be a form of self expression as well. Yeah.
[00:13:04] Adam Walker: I love that. Okay. So let’s say our listeners want to find out more about, lymphedema and treatment. Where would be some places they can go for that?
[00:13:14] Tina Tsan: Refer to lymphaticnetwork.org. It’s a huge organization with chapters throughout the world on lymphatic education and a patient can go on their website and there’s lots of resources there in terms of learning about lymphedema, what it is, lots of different resources.
They have interviewed and have podcasts where they’ve had surgeons and therapists from all over the world come on and share their knowledge and information. So there’s a wealth of information as far as understanding the disease and how to manage the disease on lymphaticnetwork.org . And they also have a directory, they have a directory of schools, where therapists can go and get special training if they want to get into this work. And also a directory for the patients to seek out therapists. So no matter where you are in the world and in the United States, you can refer to this online directory and find a local therapist.
[00:14:14] Adam Walker: Wow. That’s fantastic. And what about, you said you put out content on social media about this. Do you want to share your social media information as well?
[00:14:22] Tina Tsan: Yeah. Yeah. It’s Harmony Lymphatics, Harmony_lymphatics. That’s it.
[00:14:27] Adam Walker: And it’s on instagram?
[00:14:28] Tina Tsan: Instagram. And then on Tiktok, I’m thecompressionpolice.
[00:14:33] Adam Walker: Oh, I love it. I will look you up on both. That’s fantastic. Is there anything else you’d like our listeners to know that we didn’t cover, or any final thoughts or any final advice you have?
[00:14:42] Tina Tsan: Yeah, final thoughts. I know lymphedema might sound daunting at first, this chronic progressive disease and you just swell and swell, but actually I like to balance that with some positivity. If it’s managed, it’s very manageable.
I spend a lot of time with my patients, giving them education on compression, how to find the style, the dosage. The fit that is relatively comfortable for them that they are able to wear on a daily basis. As long as you’re compliant, and you wear this daily, it’s very manageable, it’s very containable. So the final thoughts are, if you just wear it every day, and know how to manage and contain the swelling, it won’t grow out of you.
It’s only when you let it grow out of control that it can wreak havoc. And another great thing is in the world of microsurgery, you have some really brilliant, smart, amazing microsurgeons out there who are working on this to create a surgical intervention to help create a new lymph drainage pathway.
It’s called, lymphatic bypass surgery, where, now patients who are undergoing breast cancer treatments, radiation, lymph removal, the patients that I identify as having a higher risk of developing lymphedema, they’re now, surgeons are now doing prophylactic lymphovenous bypass surgery to create a new lymph drainage pathway to prevent lymphedema from happening. So there’s a lot of brilliant people out there who are working on this in terms of prevention and also post op management.
[00:16:20] Adam Walker: Wow. That’s good to know. Well, Tina, this has been great. Thank you for the work that you’re doing so important in really improving the quality of life for so many people. And, thank you for joining us on the show today.
[00:16:31] Tina Tsan: You’re welcome.
[00:16:33] Adam Walker: And thank you for joining us for another episode of the Komen Health Equity Revolution podcast series. We will continue to galvanize the breast cancer community to support multiple populations experiencing breast health inequities to advance and achieve breast health equity for all.
Because ending breast cancer needs all of us. To learn more about health equity at Susan G Komen, please visit komen.org/health equity. And if you’re in need of timely, accurate breast health and breast cancer information, services, and resources, please call the patient care center at 1-877-465-6636.
That’s 1-877-465-6636. Or email helpline@Komen.org to get started today.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog adamjwalker.com.