Podcast: Play in new window | Download
For this podcast interview, we spoke with Susannah Haarman, PT, WCS, CLT, who is an expert in the field of breast cancer rehab and physical therapy. Susannah’s journey into this field was fueled by her personal experience with her mother’s breast cancer diagnosis at a young age. Now you get to learn from her passion for helping others navigate the challenges of breast cancer rehab and see how physical therapy may be the missing link.
The key takeaways from this conversation are all around how PT can help with breast cancer rehab. Including:
1 in 8 women will be diagnosed with breast cancer, and the age of diagnosis continues to get younger with each passing year. While that number is high, the rate of breast cancer survivorship continues to get higher, indicating more and more women are surviving the diagnosis. And each one of them will benefit from some physical therapy support during their breast cancer rehab.
Watch or listen to this interview to learn all about how physical therapy can help your breast cancer rehab.
Susannah Haarmann is a respected advocate in the fields of pelvic health and breast cancer rehabilitation. She treats patients in her private practice, Your Core PT, in Asheville, North Carolina. Pelvic rehab practitioners may know her from teaching the pelvic health series as a former faculty member at Herman & Wallace, or picked up her done-for-you patient education handout bundles at PelvicHealthResources.com. Her greatest initiative, though, is breast cancer rehabilitation.
Her resolve for preventing and alleviating the side effects of breast cancer treatment is deeply personal. When she was 13, her mother was diagnosed with breast cancer and she saw first-hand the short and long-term tolls cancer treatment can take on a body. Later as a PT and certified lymphedema therapist at a prestigious medical center, she knew there was more she could offer breast cancer patients than treatment for lymphedema and lymphatic cording. She turned to the research which was scant at the time, creating the first comprehensive breast cancer rehab course in 2013. Since then, there has been a flood of research, many course updates and iterations, as it has been taught globally live and online.
As a physical therapist treating in private practice, Susannah is acutely aware of the limitations many people with breast cancer face receiving knowledgeable, comprehensive rehab care, AND the joy of treating this patient population! Her online mission, KickPink, closes educational gaps to prevent and alleviate the side effects of medical treatment for breast cancer so people can heal; mind, body, and spirit.
Outside of her professional life, Susannah is a wife, step-mom, nature seeker, movement lover, and travel nut.
0:00 Dr. Ginger Garner: Hi everyone, and welcome back. I have with me today a guest that, oh my gosh, the first time we met, I think, was at Duke, right? At Duke University, at our PF1, which for those of you who are like, PF1, what is that? Pelvic floor. Like, when was it? 10 years ago?
0:26 Susannah Haarmann: That was the first pelvic health course I ever taught. And I think that was in 2014. Wow.
0:34 Dr. Ginger Garner: Oh, it’s been a decade. Okay. Y’all, time flies and you know it does. But when you’re sitting down with, especially since we’ve been through the pandemic, you sit down with people that, you know, you didn’t get to see for a year or two years. Or maybe you just, you met pre, during the pandemic and you haven’t even seen them and it’s four years later, right? So anyway, I want to introduce Susannah Haarmann to you all today. Welcome.
1:02 Susannah Haarmann: Thank you. So happy to be here.
1:04 Dr. Ginger Garner: I am glad that you’re here. So you guys, we live in the same state and we never see each other. I just had to ask her if she’s coming to our national PT meeting, which we called CSM or combined sections for the American Physical Therapy Association. And so we live in the same state, but we’re going to have to go to Boston to see each other.
1:26 Susannah Haarmann: I’m going to give you a big hug.
1:28 Dr. Ginger Garner: Big old hug. She is based out of Asheville, and I want to brag on her a little bit. She has a bunch of credentials behind her name, but I’m going to let Susannah explain her expertise on all of this because she is a very respected advocate in the fields of pelvic health and breast cancer rehab.
She treats patients in her private practice, YourCorePT, like I mentioned, in Asheville, North Carolina. If you’re a pelvic health rehab provider, you may know her from Teaching Pelvic Health series as a former faculty member at Herman and Wallace. Or you’ve picked up maybe Patient Ed handouts, which I have seen and they’re awesome, from PelvicHealthResources.com.
But her big passion is breast cancer rehab. And I wanted to bring her on the show today to talk about all the things that can be done. She addresses preventing and alleviating the side effects of breast cancer. And for you, I’m going to let you just, that’s probably how we’ll start, is just describing that personal story with everyone and how close it was to you and what was born from that.
She turned to the research back in 2013, so over a decade ago, to create the first comprehensive breast cancer rehab course. And since then, there’s thankfully been a flood of research, course updates, and it’s been being taught globally. Is that all on demand? That course is all on demand, right?
3:07 Susannah Haarmann: Yes, now it is. I have taught it internationally in Australia and New Zealand as well. During COVID, I went to an online education platform. And, you know, that’s been so special because, you know, I’ve been able to train people over in Pakistan and all over the world. But this is the last iteration, cohort nine of this course is coming up.
In March, we start in March and then it’s going to go to bed and be updated and revised and I can’t wait because I’m also going to be planning a level two course and that’s probably in person.
3:46 Dr. Ginger Garner: Oh, wow, that’s fantastic. I love when you can have the best of both worlds and do that because it’s great to learn online. I love to learn online. But there’s a particular magic about learning in person. And especially with the nature of what you do. We need that hands on. Yeah.
4:05 Susannah Haarmann: Yeah, it’s great to put the foundations online. And then get advanced training in person so that you’re not sitting in front of PowerPoints and your hands on and your talking case examples in person. I’m really looking forward to it.
4:21 Dr. Ginger Garner: Yeah. Yeah. Oh my gosh. Okay. So we have a lot to talk about. Um, Susanna loves, oh my gosh, you, you are, you’re newlywed. Congratulations. You’re, um, an instant mom.
4:37 Susannah Haarmann: Yes, a 10 year old
4:39 Dr. Ginger Garner: A 10 year old. They’re so sweet at that age. I know that can be challenging too, but they’re so sweet. Um, I know she loves being outside because I see all her photos all the time and I love it. And I love Asheville. Loves movement, loves to travel. So we’re going to dig into a little bit of all of these pieces. But the first thing that I want to know more about, because I haven’t heard the story from you, I’ve read it, but I haven’t heard it is what drew you into breast cancer rehab.
5:07 Susannah Haarmann: Absolutely. Well, when I was 12 years old, my mother was diagnosed with breast cancer. She was premenopausal at the time. I remember her telling us over the dinner table and, funny story. She actually had a boyfriend at the time and I got very upset and fell down the steps and got angry at him. And she was like, this is a time for my family right now. This is, we need to be together. And my mom was a single mom to myself and my sister. And she’s a nurse, retired nurse now, but she’s a tough woman.
I mean, she had ERPR positive breast cancer. It had metastasized to the lymph nodes. She had a lumpectomy and a sentinel lymph node biopsy, I believe, and then radiation and chemotherapy. And I saw her through all of that. I remember, you know, draining her port. Helping her drain her port from home. I remember giving her shots of Neulasta to get her white blood cell count up because she said that she could do it. And she was just so tired of going to doctor’s appointments.
And that woman, I think, and I don’t recommend this, but you know, she was a single mom and she worked overtime and I think she only missed a few days of work. So, you know, it was super impactful for me at that age, you know, just seeing her nauseous and holding back her hair and, you know, having hair follicles fall out. I mean, it just gave me such a great ,(follicles – they stay in) but it gave me such a great sense of compassion for what people who go through cancer actually have to navigate.
And then when I was 25, my best friend was diagnosed with neuroendocrine cancer. It’s a very aggressive cancer that tends to happen in younger people. And we did lose Courtney within a couple short years. But you know, then I went in, that was super impactful as well. And I went and did my women’s health residency, um, at Duke University. And it was a wonderful opportunity. I became a certified lymphedema therapist before even seeing my first patient there.
And I noticed that we got a lot of referrals for lymphedema and lymphatic cording, but, you know, I knew what it was like to go and hug my mom and have her pull away from me and, you know, and cause of post-mastectomy pain syndrome. And, you know, and the shoulder dysfunction that was coming through that we weren’t getting referrals from, or if it did come through, it would just say like, rotator cuff impingement.
And that was so far off from what it actually was, but it was the medical diagnosis that was given to us. And, you know, just hearing people complain about peripheral neuropathy and fatigue, and then being in the pelvic health component of things and witnessing that I was the first person to ask them about sexual health when they were on estrogen blocking medication. You know, and so I was like, there are so many side effects that aren’t being addressed. Like really medical care is about saving this person’s life, but what about the quality of life?
And so that was back in 2011 and 2012. And I was going to the research and there, it was just, I hate to say it, but at the time it was, it was pitiful. It was scant. I remember being at a public health course out in Seattle, where Holly Herman was present and I was late to the class. Classic, but I was a student. I wasn’t teaching that one. And I got to sit next to Holly Herman.
I told her, I said, I want to write a breast thing. I want to write a breast oncology course. And she held up my hand towards the ceiling and I was like, I’m committed now I’m going to do this. So I wrote that course and delivered the first iteration, with a colleague of mine, Christine back in 2013. And then I started doing it on my own. I used to teach it through Herman and Wallace around the country. And that was a wonderful opportunity.
Yeah, and then COVID hit and I took it out on my own and put an online version up and it’s been amazing. We’ve trained 123 practitioners via Kick Pink and that’s just scratching the surface. I have really big plans for Kick Pink in the future for practitioners and people who’ve been impacted by breast cancer both.
10:00 Dr. Ginger Garner: Oh, my face is actually cracking off, like from smiling. [Oh, yay.] Yeah, about everything that you’ve done. But, you know, just to go back and just hold a little space for all that you experienced growing up, because I know that it’s a massive driver, but it’s also, you know, your own experience in that trauma, right? [Yeah.] Of having to live through that and see it and feeling measures of powerlessness, you know, like helplessness, knowing that she needed something specific or that something was missing and that it wasn’t there.
And so to get to the other side where you are now and to be an expert in it, And be able to give people that care. I can’t even imagine. It’s, you can’t even say that fills a gap right or that answer to missing. That’s not, it’s not that you know it’s like you filled in the Grand Canyon, you know, with what you did.
Because I can feel a measure of that personally since, of course, mine turned out to be negative and wasn’t cancer. Unfortunately, I got to experience a lot of the gross, awful side effects of seromas and cellulitis and lymphedema and cording and all the shoulder problems and everything.
So I’m just so excited for what you’re doing for people. And I want to talk about, I want to talk about that. I want to talk about specifics of when I know what I experienced when I came out. And I think I reached out to you early on and thought I’m doing great. And then things came back negative. And then everything started to fall apart. And then I ended up in a second surgery.
So my first question is, you know, when women come out of either they think there could be a diagnosis or they’re coming up on that, and they’re going to have surgery of some sort, whether it’s an incisional biopsy or a lumpectomy or whatever they are facing. What are some of the things that should be on their radar so that they can advocate for themselves because even as I am not an oncology PT, right? Pelvic health and ortho, not oncology. So going into this, I wasn’t really sure what to expect either.
12:38 Susannah Haarmann: That is such a huge question. I can take it in so many directions. I myself have had my first scare was when I was at Duke and so even just receiving news that there’s something that is abnormal can really play with the mental headspace. But I think that there are certain things that are underestimated and that the mental component is underestimated as well as like, for example, biopsy, just biopsying the tumor before even getting into surgery, that can be incredibly painful for people.
You know, people think, oh, you just had a lumpectomy, you know, that is not the case. Like anxiety levels are actually higher in people post lumpectomy. And a lot of times, you know, people want to have a mastectomy so that they just feel safer and not having reoccurrence. And sometimes that can be, a lot of physicians don’t want to do that.
I think that it’s getting better, but we’re kind of, do you hear that? We’re talking about like some medical gaslighting, for example. There are some people that go flat or they have a mastectomy and they choose to stay flat and that can be discouraged. Sometimes people think that the win after a mastectomy is having the reconstruction, but the reconstruction can be, can have some of the most devastating side effects or some of the longest recovery times. And there are so many different procedures.
There are a lot of wonderful plastics out there, but a lot of plastics, like you’ll see that things tend to be done regionally. You know, there’s deep flap, tram flap, lap flap, you know, there’s implants.
Then, geez, talking about medical gaslighting, just things are coming to mind. For example, have you ever heard of sick implant syndrome? Where women start to feel pain and fatigue, there are all kinds of side effects and, you know, they’re told it’s not the implant, or we don’t want to take out the implant kind of like an IUD and having pain with an IUD. So that kind of covers some of the medical that covers just some of the medical gaslighting. [Yes. Some of it.]
Yes. But one of the things that is so important. is preoperative guidance. And, you know, one of the things that you talk about so much is policy and reimbursement. We should be paying for prevention. [Yes.] And people will come to me and I am able to do prevention. Sometimes people will bill for prevention and receive reimbursement, but some people just choose to pay out of pocket for that.
When you’re able to see someone preoperatively, you’re able to help them immensely with education and calming down their central nervous system and giving them skills that make them feel empowered going into surgery. So as a physical therapist, you know, whether they be young or old, you know, their past medical history, you’re getting your baseline measures for shoulder range of motion. You see how their diaphragm is working in terms of breathing prior to going into surgery. You’re getting circumferential measures of the arm and you’re able to give them so many techniques that help with healing and then also prevent things like seromas that I know that you went through.
16:36 Dr. Ginger Garner: Yeah, twice. Yeah..
16:40 Susannah Haarmann: Yeah. I mean, a lot of times people think of a mastectomy as just taking off fatty tissue from the chest wall. And it is not that. Those lymph nodes, that fatty tissue, it extends into the axilla, all of that fascia, the vasculature, the nerves in that area, the way that the anterior chest wall impacts the neck and the arm. It’s not just taking off a breast.
And so when you can see your clients preoperatively and you can get baseline measures, you can see what their personality is like before they’ve undergone the surgery, before they understand exactly what kind of diagnosis they have. You really have a sense of that person as a human. and who they wanna be and what they wanna be able to get back to.
So I could go off on the importance of preoperative assessments, but even post-operatively, what we can help with post-operatively in terms of scar tissue mobilization, fascial mobility, shoulder function, lymphatic cording, preventing lymphedema. It is rare nowadays, but it still happens because I do have, I do teach people all over the place. And sometimes someone will come to me and I’ve heard this before from my, one of my own patients years ago. Uh, my doctor says that his patients or her patients don’t get lymphedema.
18:28 Dr. Ginger Garner: Oh my. What an ego statement.
18:31 Susannah Haarmann: That is an ego statement. [Wow.] And, you know, Oh, you don’t really need to worry about lymphedema because we only took out, you know, three nodes or one node. The fact of the matter is like from my own personal experience, I have seen people that have had lumpectomy with an oftentimes a separate incision in the axilla.
I just treated a patient, currently, who had tremendous amounts of lymphatic cording. I have never seen cording like this extending down into the breast, into the inguinal region, down into the arm. She just, just, and I’m doing air quotes here, she just had a lumpectomy.
So yeah, I know that people get postoperative knee and hip physical therapy because walking is very functional. Go through breast cancer treatment. And you know, a lot of people sore and they do well, but to have that person at your back that you can go to at any time, should something arise is super important. So even if it is one preoperative and a couple of postoperative visits, you are going to sail in comparison to some people who get nothing.
20:00 Dr. Ginger Garner: Yeah. And to comment on just the personal reality of that for me. I think that let’s say you are a healthcare provider, you’re a surgeon who was a good friend, right? Yeah. They can make assumptions totally well-meaning like, oh, you’re a PT. Yeah, no problem. I’ve got this. I can handle it. No. No, you really can’t. And the other piece of that is it might be just, just, okay, air quotes for people not watching YouTube, it might just be a lumpectomy.
But, you know, when I had my experience, it ended up being dissection deep into the lats, and into the pectoralis because it had grown through all of those things. And so that’s multiple layers interrupted that is pretty deep into what feels like now your back and your chest wall for something that seemed so small, right? That it really wasn’t.
And so I hear what you’re saying when it’s not just, you know, removal of that tissue where you think, oh, you just lop it off and it’s fine. Not, no. Not when tumors, when growths, whatever that may be, are actively growing through multiple layers of tissue. And so I think there’s a minimization, you know, out there, a marginalization like, “Oh, it’s just that it won’t take that much.” Well, it, it took me a year. [Yes.] To get through that experience.
21:39 Susannah Haarmann: Right. And I think that there’s, I want to speak to a couple of other assumptions and that is you’re a physical therapist. You should know what to do. You are set up to be able to treat this population. If you know what you’re doing. There are certain healing timelines that you want to respect postoperatively. And a lot of times, you know, I just, um, I just was listening to a woman named Jen McKenzie. She’s a breast, cancer Rehab teacher, just like me over in Australia. And she was talking about the two different types of personalities, the boom and bust, you know, or the overprotective.
You know, I think that I have been guilty of this. I had knee surgery and I’m a physical therapist and I’m active and I was feeling really good. And, you know, I’m watching people running around the lake and it’s been six weeks. So I’m like, ooh, I can try jogging a few steps. Set myself back three months doing passive range of motion on myself in the morning.
You know, like, I mean, we are guides. We are guides, you know, that help keep people within the safe bumpers, and then, you know, I’m imagining a funnel, and that funnel goes up, and you know your ability to expand and what you do safely just keeps going. But if you don’t have that guidance from the beginning, you can really set yourself back and you could have been a boomer and then you become an overprotective person and you don’t get back to the activity level that you used to. And we know that exercise is good for prevention of breast cancer and to stop recurrence.
22:33 Dr. Ginger Garner: Mm hmm. And many other things like, yeah, right, we could talk about people avoiding movement or that kind of thing when we have these conditions. And in fact, it’s, it’s the contrary.
23:45 Susannah Haarmann: Yeah.
23:48 Dr. Ginger Garner: So listeners, just taking a deep breath first, because I think it’s important. Because I’m reflecting on what we just talked about. There is a high potential for the most well meaning providers and surgeons to go, you don’t have any precautions. It’s just a fill in the blank, you know, surgery, right?
But then something happens. In my case, I got a seroma that persisted until it became infected and multiple drains failed and all that kind of thing. But in the beginning, it was, oh, well, it’s small. You don’t have, you know, nope, just get out there and get back to it. Which was well-meaning. It wasn’t necessarily wrong, like we’re not here to like criticize, because you don’t know how bodies are going to respond.
I think that the first takeaway from kind of our first segment of talking about what to advocate for is to see if your surgeon, and you do have direct access, a form of it in all states, it may be limited to 30 days in North Carolina, there is no limit. So if you’re listening from North Carolina, come on over, no referral needed.
But we always want to work, you know, with your surgeon, whomever that is. But if you live in a state where it may be limited, and or it’s always a good idea to talk to them about that prehab appointment. Can we set up a prehab appointment for you? So that you know what to look for, and it tamps down so much fear. Because you know what you can do, you can’t do, you know how to be careful, you know what certain feelings that may crop up that may not be hurting anything, but maybe just part of that pain process for post-op.
It’s all that kind of education that you know, Susannah, you know way better than me, to get that set up. And then afterwards to, like you said, maybe it’s one or two visits. For someone like me, I was there for the better part of a year, multiple times a week. But here’s the happy ending to that story is, you know, if you’re watching YouTube, Oh, full range of motion. Can I feel it a little bit? Yes. Is the cording still there? Sure. You know, do I have lymphedema issues sometimes? Yes. Is it all manageable? Totally. Totally.
And I could not have done that without a great CLT, without a great PT, my PT happened to be a CLT. So let’s talk a little bit more about what it looks like afterwards. So let’s say you’ve advocated for your prehab appointment, and you’re going to see that PT for your pre-op, all your pre-op, and they’re going to help you calm your nervous system. It’s going to feel great, you have an ally, you have an advocate, you have someone that you can ask those practical questions of. And then you have your surgery. Now what?
26:56 Susannah Haarmann: So, um, at your pre-op visit, you’re given post-operative exercises. I do want to say that breast cancer rehab is probably where it was at with pelvic health, maybe 20 years ago. So, you know, we are collectively putting together a lot of the puzzle pieces and there are discrepancies there.
So for example, I do really look at the research. And even though it may be current research, I really look at who’s doing it, how the research was done, and what my experience is. So if that current research doesn’t trump old research, that’s better, then I may stick with some of the older research. So for example, post-operatively, I am an advocate, oftentimes, of not raising the arm above 90 degrees.
You can still exercise within that range for, you know, at least until the drains are removed and for about seven to 10 days afterwards. The reason for that is because the more that we move our shoulder, and sometimes even if we walk excessively, then we’re going to produce more drainage fluid, and it’s going to leave the drains in longer. And so we do want those pulled once, you know, there is less drainage.
So that also kind of has to do with seroma prevention, because after you take out, you know, after you take out fatty tissue and you’re sewn back up, then that can create dead space that the body tries to fill in. And the body is very smart. However, sometimes it can form a pocket or a seroma, and they can be very small or they can be very large.
And sometimes those can resolve on their own. We definitely advocate for some compression after surgery, but sometimes they need to be aspirated. Sometimes they even need to be surgically removed. So usually, you know, I give my patients quite a bit of leeway, but usually they’ll, they want to, they, they want to come in at about a couple of weeks post-op just to see how things are going.
And I’ll start to do more education at that point. They have, you know, if they’ve had an onco type, they understand a lot more about the type of breast cancer that they have, and what their treatment regimen is going to be like. And this is where we can be stars. Is that we can look ahead for them and kind of think in our minds, okay, these are some things that I need to educate them about. We don’t necessarily want to do it all at one time because we don’t want to scare them. But we think ahead for them.
30:03 Dr. Ginger Garner: That’s a powerful thing.
30:05 Susannah Haarmann: Yes, it really is a powerful thing. And so, you know, it could be progressing someone’s exercises to getting full range of motion and then moving towards progressive strengthening and core exercises. Again, it’s definitely going to have to do with scar tissue mobilization. We’re going to be assessing for swelling postoperatively. A lot of times that’s just normal, transient swelling postoperatively and manual lymphatic drainage can help. You don’t have to be a CLT to work in breast cancer rehab, but you definitely want to have someone at your back who is a certified lymphedema therapist that can field anything should it come up. But you can definitely work with prevention.
30:48 Dr. Ginger Garner: That’s an important point. Can you repeat that again? Because, you know, I don’t think most listeners know what CLT is and that. I think that’s really important. You said the thing about not having to be a CLT, but having one. And I’ve both hands in the air. I’m like, yes, you know, because it’s essential.
31:08 Susannah Haarmann: Yes. I think that there are a couple of reasons why people, I think that people that get into breast cancer rehab have been called to it for some reason. They’ve either witnessed someone that they know who they’re close to go through it, or they’re a lymphedema therapist and they feel like there’s more that I need to know. But there are a couple things that I think block people from getting into this area.
And one is that they think that it’s going to be depressing work. And that for, you know, is far from the truth for me. And for a lot of people that I know, it’s actually some of the most fun and refreshing therapy oftentimes. and lifting
31:48 Dr. Ginger Garner: And uplifting. You’re giving them their life back.
31:51 Susannah Haarmann: Yeah. I mean, I have, it is my favorite population to treat. I could treat only breast cancer patients and be happy, but you know, I definitely want to keep extending skills. But the second thing is that people think that they need to be a certified lymphedema therapist and go through two weeks of training and 135 hours of continuing education and expensive training in order to field this population.
And lymphedema is only a small portion of that. I mean, let me just list some of the things outside of post-operative stuff that I’ve already talked about. Sexual health. Pelvic health therapists, if you can work in breast cancer rehab, and if you’re a pelvic health therapist, you’re a great candidate to work with this population, but you can work in ortho and you can also have a pelvic health therapist at your back. Because there are a lot of people that have sexual dysfunction down the road due to estrogen blocking medication or having their ovaries removed. Or, you know, just going through the trauma of this diagnosis and tightening your pelvic floor and your jaw. Yeah – through that jaw part in for you.
32:58 Dr. Ginger Garner: Thank you. That’s so true. So true. Yeah.
33:04 Susannah Haarmann: But you know, osteoporosis, peripheral neuropathy, fatigue, you know, there’s just so many areas. But it’s just, if you’re an orthotherapist out there, it’s slightly nuanced, it’s slightly different. And when you learn how it’s different for breast cancer patients, you’re going to be better at being an orthotherapist.
Whether you are in acute care, whether you are an outpatient at a skilled nursing facility or in home health. Breast cancer, we see them across the continuation of settings.
33:39 Dr. Ginger Garner: So true, yeah. That stress of going through the diagnosis and recovering from it impacts everything. Not just your ability to manage stress, right? Which, you have to have this resilience and tolerance that just increases. But then things like just the lifestyle aspects, like sleeping, getting comfortable, right? Being able to get positioned. If you’re on estrogen-blocking meds and hormone-disregulating, you know, kind of medications, as a natural consequence of taking it, that’s its job, right? Sleep is interrupted.
34:23 Susannah Haarmann: Sleep gets interrupted. You might start joint pain because estrogen blocks nociception within the joints. So, you know, people start to experience joint pain and then what do they do? Oftentimes they stop moving when what is the best medicine? Movement. But tell me how, give me a prescription, be my coach. You know what I mean? Cheer me on. Yeah.
34:49 Dr. Ginger Garner: Yeah, let’s talk a little bit about lymphedema for a minute. [Okay.] Because there’s, I went through it. And when you were saying prehab, I was like, what I would give to have had arm measurements before. Because it took months, right, of taking measurements, it’s better, it’s worse, it’s better, it’s worse, before insurance, right, who’s in control of everything, would say, oh, okay, we’ll pay for a pump now, right?
So talk to me a little bit about what happens during that process and, you know, what that looks like, what it feels like for people when that may be coming on and they’re not sure. Especially if they didn’t have any measurements, how honestly are they supposed to know? Because we don’t want to let it… I think many people think of lymphedema as just this obvious thing of what it may have looked like 20 or 30 years ago. It’s not. It can be so subtle, but then not to catch it early could lead to it becoming a huge problem with things later. And so tell me about that. How do you feel it? How do you know? What do you check for? What would be the ideal way to catch this and then treat it and manage it?
36:06 Susannah Haarmann: Absolutely. So first I want to say that the lymphatic system is incredibly strong and also delicate. Everyone has a tipping point and oftentimes you can’t see it or you don’t know that you’re approaching it until you become symptomatic. And sometimes someone can experience transient symptoms where they’re like, oh, my ring is fitting tighter. Or, Ooh, my sleeve is making an indentation in my arm. That’s weird. Or they start to experience heaviness in their arm or they wake up in the morning and they’re like, my, my arm is swollen, but then they go throughout their day and it gets better.
And then over time, it just becomes something that they’re used to. Well, that can be an accumulation of protein within the interstitium underneath the skin and protein draws more fluid towards it. And it can also put you at risk for cellulitis. Because we feed off of protein and so does bacteria. So skin health is incredibly important in this population as well.
So that typically people they can experience transient symptoms or they can experience an onset of swelling. Now I have had patients like, for example, I’m treating someone right now who is 20 years post mastectomy and axillary lymph node dissection was told that she doesn’t have to worry about lymphedema because it’s been this long. She took an international flight, came home. writing a book and, and she could not type and she needed to be seen ASAP.
And, you know, we were able to get it under control and she’s doing great now and she’s writing her book and she’s doing a wonderful job. But she thought that she was out of the blue, you know, out of the, she was out of the, in the clear, in the clear.
38:07 Dr. Ginger Garner: Yeah. Not, but no, that’s important for everybody to understand.
38:12 Susannah Haarmann: The ideal would be a pre-op preoperative arm assessment. You can’t just look at someone for the most part who has an onset of lymphedema and have them hold their arms out to their side and say, Oh, that one side is bigger than the other. I mean, I’m right-hand dominant. My right arm is going to look better, look bigger. It’s probably also going to measure larger in terms of circumferential measures. Um, a thing that would be incredible if every lymphedema therapist had, it is an L-dex that people can stand on and they put their hands on it and actually will provide you a graph and let people know, you know, if you’re in a green zone, a yellow zone or a red zone, and you can track it over time.
So you can see how someone is even doing with that class one or class two compression. Do they need more? How are they doing? You know, with their exercise regimen. So, earlier is better. I’m sorry, did I answer your question? There’s so many things that I can say.
39:18 Dr. Ginger Garner: Yeah. So we started out with, um, getting that measurement. Um, you mentioned an L-dex. [An L-dex. Okay. Expensive. Yeah.] So, how common is it to have access to that?
39:32 Susannah Haarmann: Very rare, especially in the United States, Australia and New Zealand, they’re well ahead of the game in terms of how they provide oncology care. And part of that is because of the way that they’re able to practice and reimbursement. But also I would say their values as a nation.
39:56 Dr. Ginger Garner: That is true. That is true. And that is where policy comes in, folks. So we are going to take a short break, and I’m totally not joking, to actually encourage you to vote. Make sure that your representatives, when you look them up, who are they? Because I don’t think a lot of people know who their local House member is or their Senator is. They may know who their state, their federal Congress person is in terms of Senate and House, but many people don’t keep up with their state representatives and their local representatives.
And if you look up their voting record, you’ll see what they stand for. And I am not a party person. I am on all levels. My bedtime is 930. I’m not a political party person either. I want to vote for the person and their policy and their beliefs. And so I just want to encourage you, you should vote too. Because we want to support our health care by voting for people who are going to improve access to that care. We shouldn’t have to wait until we get something to go, oh, what does my representative believe?
41:06 Susannah Haarmann: And if you’re a lymphedema therapist in the United States, you’ve probably written your senator or congressman because In the past year, something substantial happened. The Lymphedema Treatment Act went through and that advocated for reimbursement for lymphedema therapy, but then also garments. So, yes, access to more affordable, we call it the maintenance phase.
So if someone needs continuous decongestant therapy, which may look like manual lymphatic drainage, compression wraps, skincare, exercise. When you get down to a baseline level where you’re no longer decongesting and your limb is staying at that size, then your lymphoedema therapist is going to fit you for a garment to help contain you.
Because one thing that I want to clarify earlier is that, we did talk about proteins. So the lymphatic system does a couple of things. One is immune response. It keeps you healthy. Okay. And the other thing is fluid balance and homeostasis within the body. So your body has protein that plays a part of, of homeostasis of fluid. That protein starts in the arteries, jumps ship into the interstitium. It draws fluid towards it. It nourishes the skin. And then when that pressure, basically, when there’s enough pressure, then it goes back into the lymphatic system. And then it goes back to the heart and it’s processed by the liver, the kidneys. And that is something that you are continuously doing wonderfully and have no idea about.
But what I’m saying is that your body continuously creates more lymphatic fluid. So it’s something that oftentimes has to be managed. So once someone gets to that garment size that fits them, they have their maintenance phase where they’re going to have to replace garments. And those garments can be expensive. Where they have their exercise program, where they’re doing their skincare and they’re making sure that it doesn’t worsen. They’re in their maintenance phase. They’re living with lymphedema at that point, but that can be very costly and expensive upfront and for years to come. And so the lymphedema treatment act made it so that that is more affordable for people. And so we should hopefully see fewer cases of extreme cases of lymphedema, in the future.
43:56 Dr. Ginger Garner: Yeah. Does it make it easier? Let’s just say if someone is in that maintenance phase, and they have a garment, a sleeve, whatever that has worn out, how easy does it make for them to go back? What if they hadn’t been to see that therapist or the managing doc in a year or two? How easy? You may not know the answer to the question, but I’m curious because a lot of times, you know, people have that maintenance garment, they’re going to wear out too. What happens for those people? Does it make it any easier for them to get those?
44:23 Susannah Haarmann: Well, I will say this is that oftentimes, because of cost, usually you have two garments, you have one that you wear, you have one that you wash, and you alternate those daytime compressive garments. But people for cost effectiveness will try and, you know, make that garment work as long as it possibly can. But you have an elastic band at the top and elastic band at the bottom. And if the sleeve itself wears out in the middle, then you no longer have what we call gradient compression, where it’s shunting the fluid back up to the axilla to be processed by the rest of the body. Or, you know, for example, lower extremity. And so it can actually create a tourniquet effect and worsen things over time.
So having access to affordable garments is very important for the long term. And you know, I think that I teach my patients how to self measure themselves. So they do get a comparison. So that they can kind of track things over time. There are places that people can order their garments directly. Like through lymphedemaproducts.com.
I don’t know about insurance in that regard in terms of payment, but oftentimes it is going back in to see the CLT, have them check you over, make sure that everything looks good and talk about, it’s like shoe fit. What’s new on the market? I think that this would benefit you. Maybe you change it up because if you’ve provided someone with something that they’re not able to stick to, that person may not even go back to that lymphedema therapist. They might find a new one. Does that make sense? [Yeah. Yeah.] And so it helps with continuity of care too.
46:16 Dr. Ginger Garner: Yeah, well, I’m so excited that that was passed. It really hits home for, you know, how if people may think, you know, their vote doesn’t matter. It really does. Because a lot of these local elections, we always think about the big wins, you know, the presidential race or whatever, but it’s the local elections that end up influencing our policy. And those local elections can come down to a vote, five votes.
46:43 Susannah Haarmann: You are so right. I just got goosebumps because it’s so true.
46:47 Dr. Ginger Garner: Yeah. And I didn’t really fully appreciate that until I was, you know, decided to really, you know, get more involved in policy a few years ago. So yeah, if you’re listening, your vote does matter, and you matter. And if you’re supporting someone with any of the issues that we’ve talked about with breast cancer, or you are struggling with it yourself, you know, we want to make sure that you get the care that you need. So I hope that this has been helpful for you. I know I learned some new things too.
It made me have a lot of compassion for myself, you know, going through my experiences a few years ago. And certainly has increased, I guess, all the feelings that I have for what you’re doing and how important it is. That if we think people don’t know enough about pelvic PT, I think that in many ways, they have no idea, right, in terms of what someone can do with oncology, PT and breast cancer. So thank you. [Thank you.] Thank you so much for being here and for taking this time out to educate us all. And because what are the stats currently on breast cancer?
48:09 Susannah Haarmann: Oh, well, it’s still one in eight, one in eight women will be diagnosed with breast cancer in their lifetime. So, you know, survivorship rates are improving. However, I think that the age at which people are being diagnosed is decreasing. The majority of my patients right now are about my age and I’m 42 years old, you know, in their forties. [Yeah.] And when you know, when you have breast cancer prior to menopause, sometimes that can be a more aggressive form of breast cancer.
So just to kind of sign off, I just wanna encourage people to get to know your breasts. The best time to palpate your breasts or touch them is after you’ve gone through your monthly cycle. The tissue is less dense and you can really feel what’s going on there. Some people will say that that can create false positives, or you may think that you have something that you shouldn’t be scared of. And for the majority of the time, that is the truth.
You can have, you know, just benign cysts in your breast. However, I’ll say that I oftentimes ask my patients how they discovered their cancer. And oftentimes it was them or a partner. The mammogram guidelines change all the time. Um, but right now they’re sitting at, if you’re at average risk, you should have a mammogram every couple of years, starting at the age of 40. It used to be 50.
If you’re at higher risk, like for myself. I do want to let you know, like, for example, I saw my oncologist, not that I’ve ever had breast cancer, but I told her I don’t want to have regular mammograms because it is radiation. And, you know, I don’t want to have one yearly. And so we actually did a genetic test. It’s called Invitae. There’s other types of cancers in my family. And so that, I think that was a 42 panel test that looked genetically at what I may be predisposed to.
If your insurance doesn’t cover it, it’s a transparent flat, like a few hundred dollar rate that you would pay out of pocket. And you’re informed if, if you have had a primary relative with breast cancer, like, you know, a mother or a sister, or, you know, something like that, then your risk does go up. So genetic testing, understanding that profile for yourself is important. And yeah, and then, you know, there are other options, for example, you know, if you’re at higher risk, an MRI is an option that gives you a much clearer picture. Some people do have dense breasts. That the mammograms, which is basically an x-ray of the tissue, can’t pick up breast cancer. And there’s also ultrasound too. So I just want people to feel as though they can advocate for themselves.
51:28 Dr. Ginger Garner: Yeah. Is that genetic test a direct to consumer or do you actually have to go through?
51:33 Susannah Haarmann: It is, I believe it is. So it’s I-N-V-I-T-A-E. And you may have to have a prescription for it. I’m not sure I did. But if you have, I cannot understand why a doctor wouldn’t necessarily prescribe that simple blood or saliva test to get you that information.
51:54 Dr. Ginger Garner: Yeah, we’ll make sure we add that into the show notes, because that’s a very powerful piece of the puzzle for people who are concerned. I know I have that in my family. It’s genetic, I’m at high risk. And so that would be a great interest to a lot of people I know. So we’ll include that.
All right. Thank you again, Susanna for bringing all your wealth of knowledge and your passion. It’s going to make and is making a lot of difference in the world. Thank you.
52:17Susannah Haarmann: Thank you so much. I just want to do a shout out that if you do want to learn breast cancer rehab, cohort nine of kick pink, you can go to kick pink.pro check out what that, um, course entails the last cohort, uh, of this iteration is starting in March. So I would love to see more people entering the ranks of breast cancer rehab. It would make all the difference in the world. And it is one of the most rewarding areas you could ever treat in, in my opinion.
52:46 Dr. Ginger Garner: Fantastic. Is there anywhere also where they can find you? We’ll include that in the show notes as well, but where else can they find you?
Susannah Haarmann: Yeah. So if you’re someone that wants to see someone, um, personally, uh, I do treat patients through Your Core PT, in Asheville. And then if you’re a practitioner, you can go to kick pink.pro and you can get more information there. There is a blog and, um, I’m combining kickpink.com, which is meant to be for people who have had breast cancer. I’m merging those two sites together just to streamline that information to the masses. Awesome. [Thank you. Yeah.] Thank you for the wonderful work you do, Ginger. [Oh, oh, thanks.]
A humble thanks. Take it in. You’re awesome. Oh my gosh.
https://youtu.be/u8QFPB7MqAk Follow us for Free: About the Episode: What if your pain isn’t “normal” — it’s been misunderstood? In this episode, Dr. Ginger sits down with Dr. Madhu Bagaria, a...
https://youtu.be/04zjmpV1td4 Follow us for Free: About the Episode: Men’s sexual health is often misunderstood and reduced to quick fixes. In this episode of The Vocal Pelvic Floor, Dr. Ginger...
https://youtu.be/p3A1foLw6wI Follow us for Free: About the Episode: What if your desire isn’t broken — it’s just been misunderstood? In this episode, Dr. Ginger Garner sits down with Dr....