Transcript of Bladder Cancer Rehabilitation

April 12, 2023

Stephanie Chisolm, BCAN Director of Education and Advocacy:

When I first thought about the next session with Dr. Park and the team, I thought, “Nobody thinks about rehab.” Dr. Park and I had a wonderful lunch down in Tucson when I was here a few months ago. We talked about this program, like this is going to be really exciting because she told me things about rehab that I had no idea. So I am going to just turn it over to Dr. Sarah Park and the team to tell you why rehab should be yes, yes, yes, not no, no, no. Okay,

Dr. Sarah Park:

This is awesome.

Well, thank you so much for that fabulous introduction. I’m so glad to be your facilitator today to talk about cancer rehabilitation. This is something that I am super passionate about, and I hope you will be too by the end of this conversation.

So, I’m Dr. Sarah Park. I work at Tucson Medical Center in Tucson, Arizona. I’m a physical medicine and rehabilitation physician there. I also have a practice at Mayo Clinic here in Phoenix, and trained at MD Anderson Cancer Center in Houston. I know some of you have been patients there as well. So I know the West very well. I also did my residency at University of Washington, so Fred Hutch.

And so, I’ll be providing a brief introduction to cancer rehabilitation, and then introducing our wonderful expert panel here, and I’ll be facilitating some Q&A with them. And then, hopefully, you guys will have some questions for us also. So, please save those for the end.

So everyone in this room knows very well that bladder cancer impacts quality of life. In a study in 2019, we saw that about nine out of ten survivors did not have their supportive care needs met. That is staggering. Cancer rehabilitation attempts to meet that gap. So we take a patient, evaluate their physical function, their psychological function, their social and vocational needs, and then put together an individualized rehab plan for them.

You may have not have heard of this field before, but it’s been around for almost 100 years. It was first conceptualized by Dr. Howard Rusk in the ’40s, and then really picked up steam in the ’60s and ’70s with Lyndon Johnson’s Commission on Cancer. And then in the ’80s, ’90s, and so on, the major cancer centers really adopted this. So, MD Anderson Cancer Center, Memorial Sloan Cancer Center hired physical medicine and rehab physicians, hired physical and occupational therapists, speech therapists, and this really got going.

What’s very new, however, is the formal training. So in 2007, MD Anderson had their first fellowship graduate class, and then for physicians. And then, in 2019, the Physical Therapy Association had their first graduating class. So those new certifications are what’s really novel.

Cancer rehabilitation, traditionally, has four phases. This is called the Dietz Model of Cancer Rehabilitation. And we think about when patients are first diagnosed, being really proactive in helping them to address any functional issues that may predate their cancer. If you have knee pain, neck pain, things like that, we can help you so that you tolerate your treatment the best possible. Once treatment’s underway, this is restorative rehabilitation, so getting you strong and feeling as best we can during that tough phase.

Once treatment is finished, we have supportive rehabilitation. Sometimes, unfortunately, we have metastatic disease or treatment, that’s continues daily, chemo pills, and things like that, needs supportive rehabilitation through that phase as well.

And finally, palliative rehabilitation. For those of you who may have advanced disease, metastatic disease, palliative medicine is very helpful for symptom control, and rehabilitation can be helpful as well to improve your quality of life, make sure you have the right equipment, make sure your family’s trained and that kind of thing.

Overall, the concept is that we start out with certain level of function, we pump up your function, and then if there is an event like a surgery or other functional insult, then it’s easier to get you back to where your pre-morbid functional baseline was.

So what makes cancer rehab different from regular rehab, regular PT, OT, that kind of thing? There’s really a few different things. One is it’s proactive, as I mentioned. The other is this important medical knowledge we have to be able to screen for potential complications from your treatment, keep you safe during rehab. The other is this holistic approach, so treatment across the care continuum, and really working with a multidisciplinary team. Most importantly, we consider the big picture with all of this, so taking into account, not only those difficult end-of-life conversations, and that sort of big picture but also, as we talked about earlier, this is expensive, it’s stressful. So taking into account financial toxicity, appointment overburden, and all these other features.

It’s my pleasure to now introduce our wonderful panel, and facilitate some Q&A with them.

Dr. Konig?

Dr. Franchesca Konig:

Yeah.

Hi, everyone. Thanks so much for having us here. My name is Franchesca Konig. I am a physical medicine and rehabilitation physician like Dr. Park. So I’m board-certified and trained in cancer rehabilitation as well. I did my fellowship in Cancer rehab medicine at Sloan Kettering, where I stayed on board as an attending there for a few years before I decided to switch the skyscrapers for the mountains, and I came to Colorado, or I went to Colorado, and I’ve been there since last fall. So heading up the cancer rehabilitation program at the University of Colorado now.

Dr. Eliza Newfeld:

Hi, my name is Eliza Newfeld. I’m an occupational therapist. I’m also a ReVital cancer rehab specialist and a Atlanta certified lymphedema specialist. And I’m from Arizona, born and raised. I’ve attended all three in-state schools, but I did get my doctorate through NAU, but downtown Phoenix campus. So I love the desert. I tend to stay here forever. So for those of you who aren’t from here, welcome, and enjoy the weather.

Dr. Alaina Newell:

And my name’s Alaina Newell. I’m a physical therapist and I am double board-certified in oncological physical therapy and women’s health physical therapy.

I’m the Director of Education for ReVital Cancer Rehab. We’re a national-based cancer rehab institute. That’s an outpatient therapy, so we have clinics down here in Arizona that Alisa is a therapist at as well as throughout the country. So, depending where you’re at, we can have more conversations.

Dr. Sarah Park:

Wonderful. Well, thank you guys so much for coming and joining me. We’ll start it with a few questions for Dr. Konig. We’ll move down the line, and at the end we’ll just have a little discussion and, hopefully, welcome your questions.

Dr. Konig, I know a lot of people aren’t as familiar with our specialty with physical medicine and rehab. Sometimes when I say I’m a rehab doctor, they think I’m a PT or maybe a podiatrist or a psychiatrist or all sorts of other things. Can you tell us a little bit about what makes our specialty unique?

Dr. Franchesca Konig:

Yeah. As you’ve all seen in the slides, we’ve been around for decades, but apparently we’ve done a terrible job at marketing ourselves as physical medicine and rehab. And like Dr. Park said, we’ve been called everything. And while we appreciate all these specialties and dabble a little bit, maybe, sometimes, in each of them, I tend to describe myself to my patient as a physician that focuses on function and quality of life in a patient with cancer along their cancer care continuum. Usually, this looks like things within the realm of the musculoskeletal, neurologic, lymphatic, and functional systems.

And we know that, of course, our oncologists are our godsend. They save our lives. But Dr. Park, I heard you once say… And this resonates so much with me… I heard you once say that cancer rehabilitation medicine physicians save lifestyles. And when I see my patients day-in and day-out, that’s really what I am focusing on. What is important to my patient in their day-to-day at whatever, again, stage they are in their cancer journey, I want to optimize their quality of life and function.

Dr. Sarah Park:

Absolutely. I couldn’t agree more. Yes, so I’m married to a radiation oncologist, so we always joke that he saves lives and I save lifestyles,

Dr. Franchesca Konig:

The dream team.

Dr. Sarah Park:

The dream team. How are we different from physical therapists? Because that’s another thing, sometimes we get confused, physical medicine and physical therapy.

Dr. Franchesca Konig:

Yeah. And a lot of the times I get the question, “Well, why can’t I just see a physical therapist?” And while I very deeply appreciate you all, and we are basically nothing without our physical and occupational and skilled therapists, we each have our expertise that compliment each other, and we are nothing without each other, essentially.

And so, what we do from the physical medicine and rehabilitation standpoint is, again, we’re bringing that medical point of view so we can help diagnose conditions from there. For example, is the tingling in your hand from a neuropathy from your chemo or is it from a pinched nerve in your neck? We can help diagnose these things and then guide the physical therapy or the skill therapy and prescribe that. And so we also, being physicians, we are able to order x-rays, imaging, MRIs, we can order blood work, we can prescribe medications like nerve pain medications, muscle relaxants, things like that. And then we can also perform injections.

Dr. Sarah Park:

Absolutely. It’s a very dynamic practice. I would say it’s very individualized. What we offer to each patient is going to be unique to their situation and their impairment.

How do you partner with supportive services? And what is your program usually look like for our bladder cancer patients?

Dr. Franchesca Konig:

Yeah. When the patient is referred over to me, again, I’m taking a look at that big picture. What cancer? What the treatments are. What other comorbidities or other medical issues you have that are not related to the cancer that can affect your function, quality of life? What are the psychosocial factors? So taking all of that big picture into account. Again, we’re not going to toot our horn, but we’re really good at diagnosing things within, again, the musculoskeletal and neurologic realms. And then, we can certainly prescribe the skilled therapy that’s needed in cases where if a patient may not need a course of skilled therapy, we can provide detailed exercise prescriptions for patients speaking in the line of therapy as well. One, is it right to do? When is the correct time to do physical, occupational speech, all these types of therapies? We want to be judicious as well in the timing of this skilled intervention.

Like I said, we prescribe medications, x-rays, imaging, all these types of things, injections. And then, like you’re saying, we collaborate a lot with supportive services. So I’m a big fan of interventions that can provide potential good-benefit, low-risk. Acupuncture, right? Massage. There’s going to be contraindications to those two. For example, if your blood counts are really low, you may not want someone sticking a needle in you because there’s going to be a risk of bleeding. You don’t want someone putting, if we’re thinking about massage, you don’t want someone putting deep massage over an area that may have bone disease. And so, when we’re thinking about these other surfaces, we have to think about are there contraindications to that? And that’s where we come in and help.

A big part, as well, of what we do is education, expectation management. What should you expect from a functional and quality of life standpoint? As you’re undergoing your treatment, your oncologist is telling you you’re going to get the X, Y, and Z. They’re probably going to tell you you’re going to feel fatigued, you’re going to feel like not that great. What does that look like, specifically? We can help set those expectations during treatment and beyond.

Dr. Sarah Park:

The only thing I would add also is just supporting expectations for caregivers, and sometimes providing resources for caregivers that want to do the best by their partner in going through this. I think of us a bit like a quarterback where we know all the players on the team, and we know when to pull them and when to put them in, and what their skillset is so that we keep the care efficient, really, and efficient and effective for all these ancillary services because it can be really overwhelming.

Thank you. That wonderful introduction to PMNR.

Dr. Newfeld. OT, Occupational Therapy, is also an area that I think is a little less well understood. A lot of my patients, when I tell them I’m going to send them to occupational therapy, they’re like, “Well, I already have a job.” So, can you…

Dr. Eliza Newfeld:

Yes. Yes, I hear that a lot. Occupational therapy seems to be kind of the stepchild of the therapy world. No one seems to know why we’re here, what do we do? What occupational therapy is… The main focus is that we’re an occupation. It throws people off. And what occupation really is is the day-to-day things that you do. Every task, everything you do is considered an occupation of your life. So that’s why we call it occupational therapy. What we focus on is what do you need to do every single day in order to function, participate in all the activities and roles that matter most to you? So we are unique in that we’re not just looking at your flexibility and your strength, your endurance, those kind of biomechanical factors, but who are you as an individual? What matters to you most? Why can you not do that? And how do we fix it? And not just through rehabilitation physically, but also modifications and adaptations. So we’re just a little bit more holistic in our approach, and looking just a little bit broader. So I often recommend that people go to both because we work in tandem to make sure that you can do all those things that matter.

Dr. Sarah Park:

Exactly. These are things like getting dressed, and bathed, and-

Dr. Eliza Newfeld:

Absolutely.

Dr. Sarah Park:

… that kind of thing. Maybe explain what ADLs and-

Dr. Eliza Newfeld:

Yes.

Dr. Sarah Park:

… IADLs are because those are terms that get thrown around.

Dr. Eliza Newfeld:

They are our bread and butter of charms. An ADL or Activity of Daily Living are those very, very basic tasks; getting dressed, using the restroom, taking a shower, doing your hair, brushing your teeth. These are all activities that you have to do in order to function independently. So we don’t just look at the physical ability to bathe your body or use the restroom, but also the environment. Can you do it safely and as independently as possible? So again, a little bit more broad spectrum to the picture at hand.

Instrumental Activities of Daily Living are the next step up; prepping a meal, doing your laundry, those day-to-day household chores. That’s where we focus on that. But we don’t only focus on the physical ability to do these and those kind of impairments, but also do you have any cognitive or fatigue related issues that might be getting in the way? Sometimes you can physically do it, but after all these cancer treatments, you can have a lot of fatigue and cognitive decline. And so, we are uniquely fitted to be able to look at all those different aspects and figure out how to best help you and give you the tools to participate and be as independent as possible.

Dr. Sarah Park:

Absolutely. I’m curious. What inspired you to go into OT?

Dr. Eliza Newfeld:

Yeah. My trail to OT was a little windy. I originally was actually going to be a physical therapy assistant. This is my second career in my life. I was older going back to school, in my late twenties. And so, I figured, okay, I liked this area of rehab. I had a family member, my brother passed away from cancer., He had juvenile cancer. And so I knew I wanted to work in rehab and with cancer patients on some level. I was already older, had a family, fast-track to my next career, and then it turned out there was a two-year wait to get into PTA school. So I said, “Well, in that amount of time I can finish a bachelors degree and go to PT school instead.” And that seemed better.

So I did that and then, thankfully,, I was introduced to somebody through my husband who is an OT and she let me come and shadow her at the neuro down here in South Phoenix. And I just fell in love with it. I loved that holistic approach. I remember working with her, and she was working with a gentleman who had had a stroke, and his goal was to dance with his daughter at her wedding. And so, it was just that perspective. She wasn’t just saying, “Oh, you can’t move your arm the way you could before,” or, “Your balance is off.” We didn’t care about that. We cared about, “Can you dance with your daughter at her wedding?” So that was the end game for me. I went straight to OT school.

Dr. Sarah Park:

That’s awesome, yeah. What conditions do you treat for bladder cancer patients? Survivors.

Dr. Eliza Newfeld:

So for bladder cancer it, there’s going to be a lot of that kind of toileting aspect. We do have some area of expertise in bladder control. We can help with that. We can also help with building routines, some in order to facilitate independence with that and avoid any issues. There’s also a lot of issue with the cognitive and fatigue levels with being able to get dressed and just take care of yourself or participate in your roles. Maybe you’re a grandparent and you want to be able to play with your grandkids, or you love to golf and you just can’t get out on the golf course. How can we make it so you can do that? We want you participating in life. We don’t want you to stop doing the things that you love.

And then, another big ticket with bladder cancer is lymphedema, which is the main thing that I personally do. It’s my main love. And lymphedema is chronic swelling, in this case due to cancer-related treatments, radiation, and surgeries, lymph node removal. So we have a specialty in that. PTs can also specialize in that, but there’s a lot of subspecialties in which we overlap.

Dr. Sarah Park:

Yeah. Well, thank you for that. I know that patients who come to see me sometimes have never heard of lymphedema. Anyone in this room never heard of lymphedema?

Okay. Awesome. So maybe we can just have you explain a little bit more about what lymphedema is, a little of the physiology, and the most common treatments for it.

Dr. Eliza Newfeld:

Absolutely. I’d love to.

Dr. Sarah Park:

This is-

Dr. Eliza Newfeld:

Absolutely love to. Yes. Lymphedema is very much not diagnosed as much as it should be. And usually, it’s gotten pretty far by the time someone notices it’s happening, unfortunately. And it is very common with cancer but also with lots of other issues. It can be caused by cardiac edema issues. It can lead to lymphedema. Kidney issues, all diabetes, uncontrolled diabetes, can lead to it, venous insufficiency. There’s a lot. And there’s also primary lymphedema. Some people are just born with it.

But for this particular case, you’re most likely at high risk in order to get lymphedema if you’ve had lymph node removal. And the more nodes that they’ve removed, the higher your risk category. There does seem to be a little bit of a genetic component to it. Some people can have five or six nodes removed and not have an issue. And then someone said, “Oh, they only took one just for a biopsy,” and now they have lymphedema. So it’s really a little all over the board.

What you want to look out for symptomatically is abnormal swelling, and past the post-surgical. You’re going to have swelling post-surgical. That’s normal. But if that swelling seems to be persistent, and possibly even continuing to move down your legs or into the abdomen, and after about two, three months when really that surgical swelling should be gone, and it’s still there, that’s a good time to ask for a referral to get checked out by a lymphedema specialist.

If you have any kind of pitting, meaning that when you touch the swollen area, you leave an imprint, it can feel like peanut buttery under there or memory foam, that’s a sign you want to look out for some help. Some sort of less common signs that people might ignore, just a feeling of heaviness. If, all the sudden, it seems like just walking up those stairs, your legs feel heavy and you just can’t seem to figure out why, and not because of fatigue, they just seem a little heavy, that’s also a good reason to go ahead and get checked out.

Dr. Sarah Park:

And you can see your physician, your primary care, your oncologist, and mention that to them. Or if you do have a physical medicine and rehab physician, certainly mention that. And there’s some physical exam history, and even diagnostic testing, to look into what the cause of the swelling might be.

Awesome. Thank you.

Moving on to Dr. Newel. A lot of people in this room probably are more familiar with physical therapy. If you’ve had a shoulder injury or your knee replaced or anything like that, maybe you’ve had some PT. But can you talk about some of the subspecialties in PT, and especially those that might be relevant to our bladder cancer population?

Dr. Alaina Newell:

Absolutely. So let’s all raise a hand. Who’s been to physical therapy for anything, not just for cancer. Yeah. Like they said, we’re the ones usually people know who we are, but what the different areas of PT we’re in is not always as common. In PT we have about 17 different subspecialties, which is a lot. And so, you may be referred to a special type of physical therapy at different times.

The ones that we see more common related to bladder cancer are our pelvic health specialists. They deal with any bladder, bowel, or sexual dysfunctions. You also may be referred to somebody… We also work in lymphedema as well, so you may be referred from that standpoint. And then, the other big one of our subspecialty is cancer rehab. And these therapists have an additional training outside of their normal PT school to understand what kind of treatments you’ve all gone through and the side effects, and how we can best help support that.

A lot of people think of PT as we’re good at helping reduce pain and get you back to moving again. A lot of people think of us as the movement experts. Areas we often treat are helping with fatigue, or really one of our biggest ones is weakness. I don’t know if anybody feels they don’t have the same stamina or they can’t do things as easily from their strength. That’s where physical therapy often comes into play for bladder cancer and really helping rebuild your body back up to get you back to doing the things that are important to you.

As Eliza said, we work a lot tandem, so we often say, “Well, they can physically do it. They can go up the stairs, but what’s our limiting [inaudible 00:23:32] factor,” as working as that team to figure out maybe there’s some other piece that we’re not seeing and so we really help get you moving again and working with the team to figure out the different components.

Dr. Sarah Park:

What are some of the techniques that you use to do that?

Dr. Alaina Newell:

Yeah. We have a whole plethora of things we like to do. You may hear of manual therapy. We like to put our hands on you, help get some movement back, maybe just some joints or get some tissue moving better. Sometimes after a radiation, we have people, I’ll see if they have scar tissue or they just don’t have the same flexibility. We can definitely help manual therapy in that standpoint.

Exercise is a really big part of what we do in cancer rehab, helping you individually figure out exercises for where your weaknesses are, and where you need to get back moving, but also for what you want to do. So cardiovascular exercise, strength training, balance work comes into big play, especially if you’re experiencing neuropathy.

We do have some modalities we use, but I think our toolbox is always a lot smaller than our physician counterparts. And so, sometimes we do that, but that’s why your cancer rehab therapist comes into bigger play because they’ll know which ones they can do that are safe for you versus a general physical therapist may not know when they can use different aspects of their therapy here.

Dr. Sarah Park:

That’s great, thank you. Yeah, I love to work closely with the physical therapist because often they’ll have questions about the safety and precautions, and so we work together very hand-in-hand to make sure that what we’re doing, like I said earlier, is efficient and effective but also safe for the patients.

Speaking of that, what contraindications do you commonly keep in mind when you’re doing exercise or manual work with patients?

Dr. Alaina Newell:

Yeah. I think that’s where understanding your individual case really helps us out as therapists, so that way… Technically, nothing’s off the table, but for individuals at different time points it can be. We know when you’re going through treatments maybe your immune system isn’t as strong, and so we want to be mindful of not using certain modalities or being more careful if you’re at an increased fall risk and your blood counts are low. Those are things that we have to be really mindful. And so, while exercise is good for everybody, no matter what time point be, what types of exercise can make a big difference, and that’s where we’re going to a therapist to understand those pieces can be a big deal.

Dr. Sarah Park:

Wonderful. Just changing gears here for a minute. As you were talking about immunity, I was thinking about pandemic. And one of the silver linings, I’d say, of the pandemic was the advent of Telemedicine. Are you guys using Telemedicine in your practice? I know I do.

Dr. Franchesca Konig:

Yeah. I definitely like to implement Telemedicine for that first visit when I’m meeting a patient for the first time. I do prefer that to be in person because that physical exam is going to be so important. Like Dr. Newell was saying, we like to get our hands on our patients, and a physical exam really is going to determine the best plan of care for that patient. So that first visit, I always prefer it to be TeleHealth… In person, sorry.

The next ones, I do like to implement TeleHealth. For example, if I get an MRI of your shoulder instead of schlepping you all the way over to clinic to review it, let’s do it on TeleHealth. I can go through the images with you, you can see it and ask me questions in realtime. And for check-ins too, patients who may be coming from a little bit further away, I always like to coordinate visits as best I can with the oncology teams or other visits that they may have. But sometimes that’s not the case and I want to check in, and I’m not going to have them drive five hours to just see me.

So that’s a good way to use Telemedicine in medicine.

Dr. Sarah Park:

And as of right now, I think we are able to do it across state lines in the physician practice, but unfortunately not across state lines in the therapy practice. But currently you are doing it within state, right?

Dr. Alaina Newell:

We are. It definitely has shifted a little bit as the pandemic’s moved along. One thing that we’re always being conscious of is are you safe to be able to do some of the therapy by yourself at home, or do you have support there with you? There are sometimes, specifically if we’re doing balance training or different activities, we want that person to be with you. And so,, it really depends on what you’re working with the therapist on if Telemedicine is a good option or if it’s better to have you in clinic. And then, certain things that we’ll talk about like lymphedema care, it’s really hard. Yes?

Dr. Eliza Newfeld:

You could not do lymphedema care through TeleHealth. It requires hands-on treatment every single time you’re there, it’s… So we don’t do that TeleHealth at this point, but part of it can include training family members to do a lot of the type of treatments we do so that we can maybe reduce the frequency of coming in person, and have family help take care of it at home.

Dr. Sarah Park:

Speaking of… What do you guys feel like is the best time for the patient to present to you? When in their course should they seek out your services?

Dr. Franchesca Konig:

Yeah, so the beauty of cancer rehabilitation medicine, like you were talking about Deitz’s phases, is that there is a role for cancer rehabilitation medicine at whatever part of your cancer journey. I’m a big fan of prehab, so getting our patients optimized prior to their treatments so that we can plan for the best as patients are undergoing through treatments, and then throughout the cancer course and into that maybe advanced stage. So that again, is the beauty that there’s a role, and it’s appropriate at whatever point.

Dr. Eliza Newfeld:

I would agree. For me, especially with the lymphedema piece, there’s a push where we’re trying to get doctors to send patients to us just before you even start… at diagnosis, basically. So we can do baseline measurements, education on those signs and symptoms that I mentioned earlier. And then, that way, if you start to suspect there may be an issue, I have something to compare it to. And there is a threshold when I do those measurements that tells me, yes, there is something clinically significant here. There is a change. So having those baseline measurements is really helpful. But that being said, I have patients who’ve had lymphedema for decades. We can still come in and we can help it. We can get it better. So at any point in time

Dr. Alaina Newell:

Yeah. And we’re in the same boat. I always remind people though, the best time for therapy is when you’re ready for therapy. So, if you’re saying, “I can’t mentally handle another thing right now,” we understand that, and we’ll still be here, and we can help at any time point. So if you’re saying, “Wow, I didn’t know about you, and I’ve gone through treatments,” that’s okay, don’t stress about trying to go back in time. But if you’re noticing symptoms and changes now, we’re here, and we’re not here just acutely after treatment but throughout the rest of your lifespan. So realizing some side effects may not happen right away, you may have things later on, and we can help address those at any time point as well.

Dr. Sarah Park:

And that’s actually one of my favorite roles is actually helping the patient to decide when’s the best time to go to therapy and which type of therapy to choose, just to help navigate that complex situation depending on their broader picture, their transportation issues, financial issues. Time toxicity is real with all the appointments that the oncology team to ask us to attend.

I just put up some resources. I don’t know Dr. Newell, if you want to talk about the first couple and-

Dr. Alaina Newell:

Sure.

Dr. Sarah Park:

… kind of…

Dr. Alaina Newell:

As we had said, in 2019, we had our first class of board-certified oncological physical therapists. And so, if you’re looking for a physical therapist, particularly the American Physical Therapy Association, on our website there is a “Find a therapist” button, and that’ll find you any type of PT. But there’s also a find a specialist, and that’s where if you search in for cancer, you’ll be able to see where the certified cancer specialists are in your area. There are other therapists who may not have sat for their board certifications yet. Our organization, ReVital, were spread throughout the country. Particularly, we have clinics in the Arizona area, California, Washington, for this kind of western region. We’re about to move into Kansas City and Kansas, in general, but we’re not quite there.

Another place you can find therapists is through… It’s called PORI, the Physiological Oncology Rehabilitation Institute. That’s another education company that is training therapists how to better care for people with cancer of all disciplines. So you’ll find PTs, OTs, and SLPs, or our Speech and Language Pathologists. You can find them through that organization as well. So, forget one stop, unfortunately, to find a therapist. But between those three, we’d hopefully find somebody in your area.

Dr. Eliza Newfeld:

Another great resource, especially if you suspect you might have lymphedema, is the Lymphology Association of Northern America. It is a certification that a lymphedema-certified therapist can get that’s above and beyond. I like to describe it as having your masters degrees as a CLT, as a Certified Lymphedema Therapist. If you have that Atlanta piece, you’ve passed an extra exam beyond just being certified to show that you are proficient in treating lymphedema. So they do have a great button right on the front page, “Find a CLT.” It will not be an exhaustive list of anyone who’s a CLT in your area. Only people who are Atlanta-certified. But it is a great resource to find them because we are hard to find. There is not very many of us, I know right here in Arizona, for Banner, we have five currently. I know we have one coming in June in the East Valley, and a couple more on the docket, I’m hearing. So that would put us at eight for the state. So there’s not too many to find, but we are here to help, and we will get you in there. So go ahead and find us there.

National Lymphedema Network is a really great resource just for lymphedema information in general. They have conferences throughout the year which are phenomenal to learn more about it. So I would absolutely recommend checking that out if you have any questions at all.

Dr. Franchesca Konig:

Yeah. From our standpoint, we unfortunately don’t have a similar resource that you can just type in “Find a cancer rehabilitation medicine physician.” We are also scattered around the nation. You see here on this map, mainly on the East Coast, but scattered out in several regions and, hopefully, as more folks graduate, as more physicians graduate, from these fellowship programs and are trained, the trend is for them to go and start up cancer rehabilitation medicine programs at cancer centers. And our goal nationwide really is for each cancer center to have a cancer rehabilitation medicine-trained physician. This is an essential service that our patients need, and I know we agree it should be part of the standard of care in cancer treatment is to have a cancer rehabilitation medicine physician on your team.

Dr. Sarah Park:

You can see this map is something that we have a cancer rehabilitation physician consortium. We put this together through them, through our national organization, and we’ll see Dr. Konig in Colorado and me here in Arizona. So it’s pretty sparse. The California providers and the provider in Washington just started within the last two years. So as the fellowship programs have increased, we now have eight fellowships around the country. When Franchesca and I trained, there were only four, so it’s really increasing rapidly.

Dr. Franchesca Konig:

And I think an important thing if you want to be seen by a cancer rehabilitation medicine physician or a physical medicine and rehab physician is to ask your oncology team. If you’re at a university center, a cancer center, more likely than not there will probably be someone that’s at least PMNR, and then can have that outlook of importance and emphasis on function and quality of life.

Dr. Sarah Park:

So even if they’re not formally fellowship-trained in cancer rehabilitation, all physical medicine, you have doctors should have at least some education in this space and comfort. And they will be really excellent at the parts that we’ve mentioned, as far as diagnostics of musculoskeletal and neurological concerns. And then, that organization piece, because really, what we’ve historically done is a lot with patients with severe disabilities. So spinal cord injury, brain injury, and mutation, and things like that, so we’re very used to complex medical concerns and navigating through systems that may not be advantageous for that population.

So any physical medicine and rehabilitation physician, other than, I would say, those that are strictly interventional pain. They may not have this level of interest and expertise, but those general physical medicine and rehabilitation doctors in your community will be a good resource.

Stephanie:

Other suggestions or thoughts that you guys have? Because how many now think differently about rehabilitation, and what it could do for you? Anybody?

So I think there are all kinds of programs that are meant to make your lives better, to help you thrive and survive, to continue with the activities of daily living that bring you joy, that are essential to who you are. Life after bladder cancer diagnosis and treatment might be different, but it can be a good new normal. So I think that’s something that I’d like to open it up now for questions. Anybody have a question?

Speaker 6:

Say your name.

Doug:

My name is Doug. My question is-

Stephanie:

 Hi Doug.

Doug:

Hi.

Speaker 8:

Hey Doug.

Doug:

Thank you, Stephanie. I was diagnosed with bladder cancer three years ago, and I had a robotic radical cystectomy with ileal conduit two years ago, and I had a great result. Everything works fine, generally feeling well.

I’ve had one ongoing negative effect from the surgery. I never had it before, so I’m assuming it’s related, is sort of ongoing intermittent burning and pain in my lower abdomen, which I think of as an abdominal wall neuralgia. I don’t know if that’s what it is or not, but I didn’t see-

Dr. Alaina Newell:

Okay. A possibility-

Doug:

… a specialist.

Dr. Alaina Newell:

Yeah, [inaudible 00:38:14]. As I [inaudible 00:38:15].

Doug:

Yeah. I didn’t-

Dr. Alaina Newell:

… a good possibility.

Doug:

… see a specialist. I worked with my primary care physician, and several weeks ago we started gabapentin and it’s been extremely effective. It’s very… It’s helping quite a bit. So it sounds like maybe that it’s not far-fetched, that that may be accurate. Do you see that much? And how do you treat it?

Dr. Franchesca Konig:

Yeah, some of the similar things that you’re saying, Gabapentin, Lyrica, Cymbalta, these are all nerve pain medications, and I implement them a lot in my practice. I do tell patients so that these are medications that aren’t going to heal nerves. They’re not going to fix nerves. We use them as a Band-Aid. Sometimes we need a Band-Aid. These Band-Aids can be removed, but Band-Aids can stay on for a while if we need to as well. So that is certainly an intervention that we use for certain types of nerve injuries or nerve issues as well. A nerve block can be done that can provide maybe a little bit longer-lasting relief, and for patients who maybe are experiencing side effects on Gabapentin or other nerve pain medications. And then also, a lot of times, referring over, right?

Stephanie:

Yeah.

Doug:

… To PT as well. Core strength. I’ll let you, you know.

Dr. Alaina Newell:

Yeah, I was going to say we’re like, “Oh, it possibly could be, right? Because it definitely sounds something we hear before.” And realizing when you have surgery, they move a lot of things around, and sometimes a nerve can get irritated, and we can help figure out is there some scarring that maybe is impacting that or your strength has changed in that area? And so, pain just gives us an idea of something that may have been changed, but there’s definitely ways we can work with that to help see if we can reduce the symptoms. But I think the dual work is always the important part because if you’re in a lot of pain and discomfort, therapy can be harder to do. And so, it’s like let’s take that Band-Aid and then, as time goes, we can work and see if we can help the body readjust. So that [inaudible 00:40:07]

Dr. Sarah Park:

I was just going to add that I have seen that before. And we also see it in other populations, particularly post-thoracotomy patients get pain in a nerve distribution that corresponds to the nerve that runs along the nerve, or runs along the rib rather. Same thing with breast cancer survivors. Sometimes we see post-mastectomy pain that can be either in a clear distribution of a nerve or vague across the chest wall. And we treat it very similarly, just what these guys have described, as far as some nerve pain agents. Sometimes the nerve block is necessary therapy manual work, especially restoring posture. So it tends to be effective.

Doug:

Is there followup on that? I’m fairly new on the Gabapentin. As long as it’s working, just continue that? And also, my dose is 600 a day. [inaudible 00:41:13].

Dr. Sarah Park:

So Gabapentin is a… I always tell my patients it’s a kind of a wild medication because the range is from 100 to 3600 milligrams per day. So it depends a lot on your tolerance and the side effect profile. But yes, the usual starting dose, I would say between… Sometimes they start 100 or 300 at night, and 600 is by no means a high dose.

Doug:

I started on a [inaudible 00:41:37].

Dr. Sarah Park:

Yeah. And usually there’s a sweet spot.

Doug:

Thanks.

Dr. Franchesca Konig:

Another thing I’ll say though, just to end on that, is that one of my biggest pet peeves for patients is getting stuck on medications they don’t need to be on, right?

Dr. Sarah Park:

Yeah.

Dr. Franchesca Konig:

And so, at some point, if you feel like your symptoms are okay and you want to try coming off of it in a graded fashion, we taper off these types of medication, it’s reasonable to do. And play around with it. Your symptoms come back, you go back on. I always hesitate when folks are on medications they don’t know what they’re on. I’m not saying that’s your case, but folks are on Gabapentin sometimes and I ask them and they have no idea why.

Dr. Sarah Park:

Absolutely.

Doug:

[inaudible 00:42:09] year, don’t you think? An experiment.

Dr. Franchesca Konig:

Yeah. And that depends. That’s very individual. I said that depends. Yeah.

Speaker 9:

The doctors can’t answer really personal individual questions because they don’t have this big picture.

Speaker 10:

[inaudible 00:42:27].

John:

I’m John [inaudible 00:42:31].

Dr. Franchesca Konig:

Hey, John.

Dr. Sarah Park:

Hi, John.

Dr. Franchesca Konig:

Tips to get ready for surgery in just over a month and post-therapy to get back to doing water sports, starting you have to have your knees to your chest. Is that possible to get back to that flexible? Thank you.

Dr. Sarah Park:

Great question.

Dr. Alaina Newell:

Yeah, I was going to say, so when we think of before surgery, the more time we have is usually better. Think of anytime you’re trying to get ready. Let’s say you’re going to go on a trip, right? Do you want to get ready the night before or do you want to get ready the couple of weeks before? Usually, it’s nicer if you can spread it out. You can get more done. You can feel more comfortable. You can get stronger. Same situation. So, as soon as we know when surgery is, that’s usually when we want to try to start to build your strengthening so that way we can get that ramp as high as possible before you go into surgery so you’re as strong as you can be going into there.

When we think of pre-surgery, there’s two areas we really focus on. One is building your cardiovascular strength, meaning your ability to walk, ride a bike, swim, things that get your heart rate going. That one’s a really important one in terms of how you tolerate through surgery.

And then the other big half of that is building your strength or building your muscles up as much as possible. No matter what. All of us, if we sit too long or we lay in bed too long, we’re going to lose muscle. And so, the more we can build that up before you go into surgery but what you lose is not going to impact you as much as you would if you’re weaker.

So A, starting as soon as we can. I think we had a slide that has the ACSM-

Dr. Sarah Park:

Yeah, it just-

Dr. Alaina Newell:

… exercise? Yeah.

Dr. Sarah Park:

It just turned away.

Dr. Alaina Newell:

So there’s guidelines to the America Oncologist Sports Medicine, and they have a thing called Exercise is medicine. And these recommendations come from a big panel, and what we really shoot for is 150 minutes of aerobic exercise, a moderate intensity aerobic exercise a week. So that’d be walking big, like a moderate walk, 30 minutes for five days a week is what the goal is. And then, two days of doing strength training for all your big muscle groups. And so, that is where the goals [inaudible 00:44:39]. No matter where you are in your continuum, going in before surgery, a little bit, give yourself recovery time after surgery, and then through life is what we try to achieve. I think your other question was can you get back into the water, right? After surgery?

Dr. Sarah Park:

Yeah.

Dr. Alaina Newell:

Is that the other half of it?

Dr. Sarah Park:

Yeah.

Dr. Alaina Newell:

Yeah. There’s definitely… it’s definitely can. Usually we want to give you some time to make sure your incision’s healing well and making sure your physicians cleared you to go back into the water. Because [inaudible 00:45:07] say yeah.

John:

Yeah.

Dr. Sarah Park:

Yeah. There’s some safety considerations, but it’s certainly doable.

John:

Yeah.

Dr. Sarah Park:

It’s just a matter of what type of surgery you have, and if you do end up having an ostomy, sometimes we can make some modifications to make that safe for the water. And so, I would say the other pieces of prehab that I’d recommend are not only the exercise, but we also… The nutrition panel that we just had, so implementing, especially those protein recommendations. For patients that are protein-deficient, I usually recommend somewhere between 1.2 and 1.5 grams per kilogram of body weight. For patients, as was mentioned in the panel, if they’re otherwise doing okay on protein, 1 gram per kilogram of healthy body weight.

And then, the whole foods, and everything we just heard on the nutrition panel, I thought, was wonderful advice, in that prehab phase, especially, and with recovery.

And then, the third part of a traditional multimodal prehab program would be the psychology of it all. So if you’re having a lot of anxiety, depressed symptoms, addressing those ahead of time, employing mindfulness techniques. Music therapies actually got great evidence. And then habit formation. So quitting smoking, making sure our drinking is within moderation or quitting that, having healthy habits in general, and talking through those with your physician, having an honest conversation about those bad habits that you may take this opportunity to kick.

Dr. Eliza Newfeld:

And then I would, again, just highly recommend finding a local certified lymphedema therapist and getting those baseline measurements, just in case. You might never see them again. A lot of times that’s what happens with people who come to see me for baseline. I meet them once, and I never see their faces again. But for that 10% that does come back, it does really help us determine whether or not you have an issue. And then you already have that person there. So I think it also alleviates the stress of it. If you do start having a problem, you’re already in the system, you already have a connection, and then you don’t have this whole process of finding it because it can be a bit of a process after the fact.

Dr. Sarah Park:

The other thing I’d recommend is if you have a cancer rehabilitation physician in your community at established care, ask your oncologist for referrals so that they can help guide you through these different phases.

Dr. Eliza Newfeld:

There’s a person there.

Dr. Sarah Park:

Oh.

Tom Clark:

Oh, I here I am. Hi.

Dr. Eliza Newfeld:

I just want to say one quick thing. Sorry.

Doug:

Oh, more?

Dr. Eliza Newfeld:

I didn’t mention it before. Lymphedema doesn’t just happen in your legs. It can be anywhere in your whole body, including scrotal, penal, vulvar, anywhere. And that can be a very sensitive topic. So I would really, really recommend don’t be shy about it. If you have an issue, we’re used to it. We do it all the time. Come in and get help because we can help with swelling anywhere in the entire body.

Sorry. Go ahead.

Speaker 10:

Ahead.

Tom Clark:

Oh, hi. I’m Tom Clark. I’m from Albuquerque. And first of all, thank you for being here and doing this. Really appreciate it. And I couldn’t quite hear. You were discussing something earlier with the symptom… One of the symptoms was heaviness in the legs, climbing the stairs. If you could go back over that briefly, and also tell me, can one of the symptoms be parasthesia in the feet?

Dr. Sarah Park:

Go ahead.

Tom Clark:

Thank you.

Dr. Eliza Newfeld:

I mentioned it as a possible symptom that could be indicative of lymphedema, an onset lymphedema. It could also be weakness. It’s something that we would want to bring you in and physically assess. And there’s a lot of different ways that we would do that. There’s different assessments that we would put you through to determine could it be lymphedema or is it just a weakness issue, post-surgically, or a post-cancer rehab. So if you are having those kinds of issues, I would very much recommend finding a local specialist to have it checked out.

Tom Clark:

Now, what is it? And what causes it, exactly?

Dr. Eliza Newfeld:

Lymphedema?

Tom Clark:

Yes.

Dr. Eliza Newfeld:

Lymphedema is caused by disruption to the lymphatic system. So the lymphatic system’s job is to remove fluids out of your tissues. Your blood gives your tissues all its nutrients. And then the lymphatic system’s job is to take all the waste away.

When that lymphatic system gets damaged, the fluid gets stuck, and then you get a buildup into swelling, which over time can thicken and become pitting or hard. So it is really important if you’re having these issues to get intervention because it will not go away on its own. It’s a chronic issue. Once think. Lymphatic system’s damaged, it’s damaged, it does not regenerate.

So that’s what lymphedema is. Lymphedema is chronic swelling that will not go away on its own due to damaged lymphatic system.

Tom Clark:

Okay. And numbness in the feet, that sounds like more like a neurological problem.

Stephanie:

Yeah. So-

Tom Clark:

Okay.

Stephanie:

So, that does sound like a nerve injury, neuropathy. If your legs are very edematous, meaning they’re very swollen, those symptoms can feel a little bit worse of a neuropathy, but lymphedema would not cause neuropathy.

Tom Clark:

Okay.

Dr. Alaina Newell:

Yeah, we-

Tom Clark:

That’s very clear. Thank you so much.

Dr. Alaina Newell:

And I think from that, we see numbness and tingling and paresthesias in cancer treatments more commonly for other reasons. And I don’t know if we want to touch on that, because I think we haven’t talked a whole lot about that piece of things we help treat.

Dr. Sarah Park:

Yeah, absolutely. The types of chemotherapy that are used in bladder cancer, especially the platinum-based chemotherapeutics, those can cause neuropathy, which is damage to those little nerve endings. Often they manifest with symptoms in the hands and feet. Sometimes we call it a stocking-glove distribution, so to the knee, to the wrist. And it’s usually a sharper tingling sensation. Sometimes worse when you’re trying to fall asleep at night or it may wake you up at night. Other people don’t have the tingling or sharp sensation, but they just have numbness. And the numbness, while not necessarily painful, bothersome, it can impact your function a lot. Especially when you’re walking. You’re not getting great feedback from those feet, and you’re more at risk for a fall. You may not even know it. So if you’re stumbling, catching your toe, and thinking, “I’m just a little clumsier,” that might be a sign of neuropathy. Or if you’re having trouble doing buttons or doing fine motor skills, that may be a sign as well. So there’s things to consider if you’ve had exposure to chemotherapy.

Speaker 13:

Question on the side.

Ray:

Yeah. My name is Ray, and I am curious if lymphedema, if you see it with both like BCG in a vescular, I a vesical… I can never say that word. Or just the immuno through the veins or the bladder wash. Can it be both?

Dr. Eliza Newfeld:

Lymphedema can be caused by a lot of different things, a lot of different things. And a lot of times with people who have lymphedema, it’s usually a variety of different things that have created a perfect storm to now develop into lymphedema. And then, there are other diseases such as lipedema, which is probably another one you’ve never heard of, that can lead to lymphedema as well. But with this particular population, the most common reason to end up with lymphedema is due to damage to the lymphatic system through surgery and radiation.

Ray:

Surgery, meaning a TURP?

Dr. Alaina Newell:

Surgery being lymph nodes removed.

Ray:

Yeah.

Dr. Alaina Newell:

So-

Ray:

Okay.

Dr. Alaina Newell:

… What we think about is more a surgery to the lymphatic system, not necessarily just surgery to the bladder itself.

Ray:

Okay.

Dr. Sarah Park:

Yeah, it has to be direct disruption of the lymphatic, whereas in TURP is more local to the bladder.

Speaker 13:

[inaudible 00:53:28] down here. [inaudible 00:53:30].

Richa:

Hi. My name is Richa. And my question is, we’ve been talking about the lymphatic system, and all these things happen as you progress, but is there any… There are many devices also which people use to keep the lymphatic system in a healthy state. So I don’t know whether you’ve heard. I’ve heard of Beamer and many such… which keep the lymphatic system going. So what is your take on it, and do you recommend something which we can do it beforehand, which helps-

Dr. Eliza Newfeld:

Yeah.

Richa:

… keep it going in, in keeping it going?

Dr. Eliza Newfeld:

Right. So if you’re speaking beforehand, the most important piece I would say is physical activity. Your heart pumps your blood, your muscles pump your lymphatic system. So if you are very sedentary, you’re not moving your lymphatics. So that piece of staying active, back to what she said about the 30 minutes, 5 days a week of walking, particularly for your legs, your calf muscle pump system is the most important pump system for your lower extremities. So walking that heel-toe strike is really important. If you have a more shuffling gait for whatever reason. Using a walker, people tend to shuffle their legs rather than doing a real good step. Getting into prehab physical therapy to get that better gait and walk can really help improve that.

As far as exercise goes, our gold standard is in the water. Water provides natural compression if you think of that pressure of the water against the body. So you get the compression, which helps the lymphatic system work more efficiently, as well as getting your exercise in a really safe environment. You’re not likely to have falls and things like that like you would on land.

Dr. Sarah Park:

To answer your question about the devices, often once lymphedema has developed, our standard of care for lymphedema management is called Complete Decongestive Therapies, CDT. And it involves four components. It involves massage, compression, skincare, and exercise. There are compression garments. There are custom compression garments that can be made or off-the-shelf compression garments, those to be recommended by the lymphedema therapist, and you’d be measured for those. And then the massage component to… Can perform self-massage. And if it’s not feasible, then there are pneumatic compression devices, and there’s several brands, but the most, I guess, known one and best evidence is for the tactile Flexitouch pneumatic compression device. It’s hit or miss as far as insurance coverage on that.

That actually brings me… I didn’t ask you guys, but everyone always asks me, does insurance cover this? And the answer is yes.

Dr. Franchesca Konig:

Across the board.

Dr. Eliza Newfeld:

I will put a caveat on that though for lymphedema purposes. They will cover you coming for lymphedema therapy. And I will also say, for the massage piece, manual lymphatic drainage is the massage that we do for that. It is not the same as if you look at Massage Envy or whatever massage parlor, and they say Lymphatic massage. That’s a fad. It is not the same thing.

Dr. Sarah Park:

Yeah.

Dr. Eliza Newfeld:

Please don’t go there. And people have done it, and it hurts. And I don’t know what they’re doing, but it’s not the same thing.

But for insurance purposes, in December, the Congress finally, after 12 years of hard work, passed the Lymphedema Treatment Act. And what that is doing is requiring Medicare, starting in January 24, to cover the cost of compression garments. At this moment in time, they do not. It is an out-of-pocket cost for that. But starting in January, they will to custom or over the counter, depending on your needs, garments a year, there will be some other things coming down the pipeline, but they’re still negotiating and finding all of the finer details.

There is a website, if you just Google Lymphedema Treatment Act, you can get to their website and they will be updating that. There’s a really good FAQ sheet that is as up-to-date as possible at the moment. But we do know that they will be starting to cover the garments. It doesn’t have any impact on the coverage for the pumps, unfortunately. And that is pretty hit or miss. But it will require you to go to lymphedema treatment with a CLT. I can tell you that. They want you to do at least four weeks of conservative treatment, which includes treatment with someone like myself, wearing compression, exercise, all those good things. And then, usually, we can get it mostly covered, if not completely.

Dr. Franchesca Konig:

And another caveat, I’ll just say real quick is that for the physician’s standpoint, there’s no necessarily a cap on how many times you can see us, but for PT and OT, your insurance may have X amount of sessions for each specialty. So that’s something to consider as well throughout your calendar year when insurance then gives you new availability to sessions.

Dr. Eliza Newfeld:

Thankfully, we’re two separate buckets.

Dr. Franchesca Konig:

Yes.

Dr. Eliza Newfeld:

So…

Stephanie:

[inaudible 00:58:55] thought about [inaudible 00:59:00] an opportunity [inaudible 00:59:01]. We hae another session coming [inaudible 00:59:02] another session coming right up. I saw you come in.