Sidelining cancer treatment’s side effects through exercise, nutrition, prehab and rehab

Transcript:

Diane Mapes

Hi there. I’m Diane Mapes with Fred Hutch News and another episode on cancer survivorship with our podcast Bench to Bedside and Beyond.

Now, as some of you already know, I’m a cancer survivor myself, having gone through treatment for lobular breast cancer in 2011. I was not treated at Fred Hutch but came here shortly after to help take down this disease.

How? By using my voice, by writing about cancer research and the people who are here working to cure it or prevent it. And by telling stories of the folks going through cancer, its treatment and its aftermath. We’ll be starting off today with Marty Chakoian, who was diagnosed with prostate cancer in 2004 and has been using his voice and a lot of his time and energy to take down the disease ever since. Welcome to the podcast, Marty.

Marty Chakoian

Thanks. Thanks, Diane. It’s great to be here.

Diane Mapes

So I always say that cancer is not a trip to Acapulco, so I rarely call it a journey, but it’s definitely a ride. Can you tell me a little bit, Marty, about your own personal experience with prostate cancer, about your diagnosis and your treatment?

Marty Chakoian

Sure, sure. I was first diagnosed with prostate cancer in 2004. I was 56 years old. I wasn’t really expecting prostate cancer at that time of my life, but there it was. Fortunately for me, it was a pretty, non-aggressive or less aggressive form of the disease. If I had had that diagnosis today, I probably would not have rushed into treatment.

I would have needed treatment eventually, but I would have been a lot slower. But in 2004, you know, the medical oncologist, the radiation oncologist, the urologist, they all said, 'Oh, my God, you have cancer! We've got to deal with this right away.’

And so I did. I ended up having brachytherapy, which is a kind of radiation where they inserted radioactive seeds or pellets about the size of a grain of rice, into my prostate and the radiation, then, you know, supposedly killed the cancer. And I recovered from that really well. And then 9 years later, my PSA number, PSA is a determination or an indication of prostate specific antigen. So the prostate produces this chemical that’s measurable in your blood. And the more you have of it, the more likely it is that there’s a cancer going on.

So after treatment, it’s actually a very good indicator of whether your cancer is coming back. Mine did about 9 years later. It was a very slow increase. And in 2020, I had some more radiation, which was kind of unheard of at the time, but I had salvage radiotherapy to help deal with my recurrence. That was six years ago.

And so far it seems to have worked just fine. So that's my journey. I've been really lucky. I mean, you know, a lot of guys haven’t had as easy a ride as I have.

Diane Mapes

I appreciate that, Marty. Thanks for sharing that. I know that you have had to deal with unpleasant side effects and aftereffects of cancer, even though you say that you had an easy ride of it.

But one thing that's interesting about cancer aftereffects is some of us also experience this beneficial side effect of getting involved in patient advocacy. And you and I both have dealt with that particular aftereffect of a cancer diagnosis and treatment. We're trying to help others, you know, avoid it or get through it. So can you tell me a little bit about your work as a prostate cancer patient advocate at Fred Hutch, and I know you do work nationally, too. 

Marty Chakoian

Even more locally than Fred Hutch, I lead a prostate cancer support group here in Seattle, and we meet twice a month, prostate cancer patients and caregivers, usually those are spouses or partners, sometimes sisters or children. We meet twice a month, once via zoom and once in person.

Those are two very different meetings. But as a result of those, I get to talk to about 50 prostate cancer patients every month, which is pretty fulfilling and pretty exciting and also sometimes pretty humbling. So I do that, that’s been sort of my first passion. At Fred Hutch. I chair what’s called the Pacific Northwest Prostate Cancer SPORE Patient Advocates Committee.

A SPORE is a specialized program of research excellence. Okay, so our SPORE is Fred Hutch, University of British Columbia and OHSU in Portland. And we have a patient advocates committee that I chair which provides some input on projects and just gives us a chance to connect with one another. So that’s pretty fun.

Diane Mapes

And you also connect with researchers and clinicians too, I believe?

Marty Chakoian

Absolutely. We have a clinician or a researcher meet with us every month. There are currently four projects that the SPORE funds and oversees. And so each of those projects has a patient advocate associated with it. So I meet with my project team, one of the four projects we meet every month and talk about how that project is going.

And I also serve on the community advisory Board for the Precision Oncology program. I’m an advisor to Dr. Yaw Nyame’s Bakpac project, which is a very exciting project aimed at trying to reduce the prostate cancer mortality disparity among Black men. And then at the national level, I serve on the board of directors of ZERO Prostate Cancer, which is the largest patient advocacy and support organization in the country for prostate cancer.

And I serve on the National Cancer Institute Prostate Cancer Task Force, where we get to review proposals for research funding. I get to comment on those research proposals from a patient's perspective. So lots and lots of prostate cancer.

Diane Mapes

You have a full-time job, Marty. Can you delineate what the basic treatment is for prostate cancer patients. I’m very familiar with what they usually do for breast cancer patients. And I know that it can be tailored and, you know, a little bit different. But for prostate cancer patients, I think it’s surgery and radiation or is the most common treatment surgery, chemo, radiation the way it is with breast cancer? And then the anti-hormones, of course.

Marty Chakoian

We only have an hour, right? I’ll try to be quick. So, yeah, I mean, you mentioned, I think, active surveillance, as, as kind of the first line if your cancer’s not aggressive enough that it needs immediate treatment and, and so that’s the first step.

If your cancer does need to be treated, then you’re right, the two basic choices are surgery to remove the prostate or radiation to try to kill the cancer cells in the prostate. If the cancer is not particularly aggressive and if it’s a tumor that’s only located in one small section of the prostate, then focal therapy may be an option to try to kill the tumor without destroying the entire prostate.

Diane Mapes

And this is with radiation? Sort of a focused beam?

Marty Chakoian

Well, there are a number of ways of doing focal therapy. So you can use what’s called stereotactic body radiotherapy. Very pinpointed radiation, but more for focal therapy as an initial treatment, more common is using cryotherapy or heat therapy, electrical therapy, even brachytherapy, like I had, only not to the entire prostate, but pinpointing just where the tumor happens to be. There are more and more types of focal therapy are being developed for prostate cancer. One of the urologists at Fred Hutch, Dr. George Schade, who spoke to my group about focal therapy, is really a local expert on this. And it’s really good.

Diane Mapes

Chemotherapy doesn’t sound like it’s as common then.

Marty Chakoian

Chemotherapy is down the line.

So I touched on the initial treatments. And those are intended to be curative, but they aren’t always, you know, as I said, in my case, my initial radiation therapy turned out not to be curative. And I had to have some follow-up therapy. That happens, unfortunately, and I’m not gonna quote you a number, but there are a significant number of prostate cancer cases where you have to do follow-up therapy.

So, in those cases, there are a number of things that can be done depending on what your initial therapy was. So if you had your prostate removed but you have some cancer left in the prostate bed, then radiation to that area would be appropriate. So if you have a small number of metastases, or oligometastases, roughly 5 or fewer, then pinpoint radiation to those metastases can be very helpful.

In chemotherapy, docetaxel is the most common, can be good as cancer advances. But the primary sort of next step for prostate cancer is what's called androgen deprivation therapy, which basically keep your body from producing testosterone. Cancer cells are stimulated by testosterone.  Prostate cancer cells have what’s called an androgen receptor on the surface of the cell and when testosterone connects to that androgen receptor, it stimulates the cell nucleus to start dividing and so it feeds the cancer. So the initial step usually is just to try to cut off that testosterone, which, as you can imagine, most prostate cancer patients aren’t really very enthusiastic about.

Diane Mapes

No, breast cancer patients, likewise. Not too enthusiastic about taking anti-hormones that suppress their estrogen because women need their estrogen and men need their testosterone.

Can we talk a little bit about some of the common side effects that prostate cancer survivors or patients are dealing with, you know, on a day-to-day basis or what they might have to deal with down the line? I think you mentioned hot flashes, I’m assuming from the anti-hormone therapies?

Marty Chakoian

That’s right. So one of the interesting things about prostate cancer is that at least initially, there aren’t really very many side effects from the cancer itself. If it metastasizes to the bones, then you can have bone pain. If the prostate is swollen enough that create some discomfort or some urinary problems.

But most of the side effects come from the treatment. And so that’s the balance that we all face: what’s the minimum treatment that I can have to control my cancer to minimize those side effects. So as I said, the first line of treatment is hormone therapy. And it does produce a number of pretty uncomfortable side effects.

And hot flashes are one. They can also reduce bone density.

Diane Mapes

How about joint pain?

Marty Chakoian

There’s some, but not a lot of joint pain. But that happens. Brain fog also happens. The most common, actually, and most disappointing side effects come from the initial therapy itself, whether it’s radiation or surgery and that’s urinary incontinence. Gosh, probably half of our support group meetings we might be talking about urinary incontinence because the urethra goes from the bladder through the prostate and down through the penis. And that’s how you get rid of your urine, right? Well, whether you radiate the prostate or remove the prostate, you’re damaging the urethra.

And so urinary incontinence is a big, big problem.

Diane Mapes

Are there survivorship programs or supportive services that can help with that? I mean, you know, this is what we’re trying to accomplish here ― not just get rid of the cancer but also help people maintain that quality of life.

Marty Chakoian

Yeah, absolutely. So one of the things that I do with my support group is every month when we have our Zoom meeting, we have a guest speaker, typically somebody who is an expert in some aspect of prostate cancer.

And a couple of the recent speakers that we’ve had deal exactly with that ― they really specialize in the aftereffects of prostate cancer treatments. So urinary incontinence, as well as erectile dysfunction, which is another big one. Urinary incontinence can be treated by two different kinds of surgery. There’s like a mesh, a net, that can be placed underneath the prostate or where the prostate used to be that can help. The other thing that they can do is actually put in an artificial sphincter that can open and close through your own, you know, manual effort basically to allow you to urinate when you need to, and to keep the thing closed when you don't want to be leaking.

The other thing, there’s a great physical therapist from Fred Hutch who came and talked to our group about the exercises that we can do before treatment, during treatment, after treatment to strengthen the pelvic floor and help to deal with urinary incontinence.

Diane Mapes

You mentioned a little bit about erectile dysfunction. This is a cancer that really can hit you where you live. It’s really good that they are exploring these options and coming up with workarounds. And I also know that the newer thinking in prostate cancer, certainly and in other types of cancer is de-escalation.

The whole idea of less is more, trying to cut back on the toxicity of treatment in order to cut back on the side effects and aftereffects and all of that. One really good example is active surveillance rather than just going directly into surgery and treatment. It must be hard though, I imagine, for men.

Marty Chakoian

Active surveillance has really come into its own now. And one of the things that I’ve been able to do is review the revisions to the American Urological Association guidelines for prostate cancer diagnosis and treatment and active surveillance now is really given priority for low-grade prostate cancer. Basically, Gleason grade one prostate cancer.

Diane Mapes

Because cancers come in different flavors, if you want to call it that. Some are really super aggressive and need to be treated right away and some much less so that's slower.

Marty Chakoian

Prostate cancer is a very heterogeneous disease. It can be different across different patients. But even be you can have different prostate cancers within the same patient or even within the same tumor. So that makes it much more complicated to treat. And I want to say just a couple of things about de-escalation. You’re right. I think there is more emphasis now on the need to reduce treatments to the level that they are, you know, minimally necessary just to help patients preserve quality of life.

But yes, it’s complicated. As I say, I serve on the National Cancer Institute Prostate Cancer Task Force, and we get proposals to try treatments that back off from some of the current standards. And it’s challenging because you don’t want to subject patients to something less than standard of care. And yet, unless you try to figure out how to reduce that while still protecting the life of the patient, you’re never going to make progress with de-escalation. It’s very, very complicated.

Diane Mapes

It is complicated. And I really respect the patients who will be involved in clinical trials, especially ones looking at de-escalation of treatment, because they really are pioneers and they are really doing the work for the rest of us to make sure that patients diagnosed after them will have the best quality of life possible. So what are we doing with regard to new types of therapies?

Marty Chakoian

Well, some of the more exciting things that have been happening have been in the diagnosis arena. You know, it used to be you get a PSA test and then you get a biopsy, and then you’d either get surgery or radiation; prostate cancer screening and diagnosis has become much more sophisticated.

And that’s really important because that helps then to determine much, much better who needs treatment and which treatment would be effective. So, in terms of scans, it used to just be a CT scan, now an MRI. Now there's what’s called a PSMA PET scan. PSMA is a protein that’s on the surface of most prostate cancer cells. And so this is a very accurate test to determine whether you have prostate cancer, where it is how much it’s spread and so on and so forth.

In addition to the PSA blood tests, there are also now other diagnostic tests. The Decipher test, ArteraAI, MyProstateScore 2.0. I mean, there’s a whole range of increasingly sophisticated tests that can tell you all kinds of things about your prostate cancer and which treatments might be successful, and which might be less successful.

So that’s really good. In terms of treatment, probably the biggest thing that’s come up recently is what's called radioligand therapy. A ligand is a molecule that attaches to typically the PSMA protein on the surface of a prostate cancer and has at the other end of it a radioactive particle. And so that molecule then finds the prostate cancer cell attaches to that PSMA protein, gets pulled into the cell, and the radioactive particle then emits radiation that doesn’t instantly kill the cancer cell, but it disrupts it from reproducing.

Diane Mapes

And it is targeted at that cancer cell. So unlike chemotherapy, which targets all fast-growing cells, this radioligand therapy just kind of draws a bead on the cancer cell and then travels right to it.

Marty Chakoian

That’s the beauty of it. Exactly. And there are other proteins that they’re finding now besides PSMA that are also on prostate cancer cell surfaces.

They’re using ligand therapy potentially to take a CAR T-cell and attach that instead of a radioactive particle. What if we had an immunotherapy cell that would attach to the prostate cancer cell and kill the cell that way? And that way we don't have to introduce radiation into people. So I mean, there’s all kinds of stuff going on.

Diane Mapes

I love that they’re moving away from the toxic treatments. They’re trying to find workarounds to make them work more effectively with less damage to our body. That’s what survivorship is basically there to take care of, the aftermath of treatment. And they are readily acknowledging now that treatment does leave you with a lot of aftereffects.

And trying to come up with supportive services to help with those aftereffects. So I’m curious where are we with that? Are survivors getting what they need?

Marty Chakoian

So that’s obviously a complicated question. The men in my support group and their caregivers, their partners, their spouses, are a different breed. People who choose to deal with their cancer, whether it’s prostate cancer or any other cancer, through a support group, by actively involving themselves in their care, by taking the lead, they’re more likely to get the services that they need.

I can tell you that a lot of the guys in my support group, we talk about the services that are available, and sometimes they’ll say, Oh, I didn't know that. And somebody else in the group will say, Well, here, let me give you a phone number in the name of somebody who’s really good and they make that connection.

That’s one of the biggest values of a support group. But that’s for the people who are there. And I feel for the people who aren’t there.

The other thing that we haven’t really talked about is the psychological side effects of all this, because, I mean, just I mean, you can certainly speak to that, as a breast cancer patient. Because I will tell you, you know, with prostate cancer and the side effects, if you’re a man and suddenly you’re no longer able to have sex the way that you used to, and you go out and start to leak, you know, your pants are wet. And I mean, it just is it is can be really, really devastating in terms of a person’s self-image, sense of self-worth, relationships, all of that.

And so there’s more and more attention that’s finally being given to that. There’s a social psychologist at Fred Hutch named Dr. Megan Shen, who had an article in The Seattle Times not too long ago. And I’ve invited her to come speak to my support group because she talked about the grief that prostate cancer patients and other cancer patients feel from just the devastation of not only the disease and what the disease does to you, but what the treatment does.

Diane Mapes

I definitely grieve my lost breast, my body parts. And every day when you look in the mirror, it’s another reminder. You do what you can to reconstruct your body. And that helped me a lot, getting reconstructed breasts. You try to recreate that being that you are so familiar with in the mirror. Because when you look in the mirror and that being looks like a space alien … or in my case, a bald 10-year old-boy, you know it, it can be tough, and it can definitely do a number on your self-esteem and your body image and your confidence.

I have always felt a real kinship with prostate cancer patients. As a breast cancer patient, we both have hormonally driven cancers. They both kind of hit you where you live, you know, in your manliness or your womanliness, you know, and that is a huge aspect of survivorship.

So you’re saying that Fred Hutch does have great mental health providers and counseling and even integrative help and all kinds of supportive services. And it sounds like the people in your group also are finding help and sharing that help with the other members, which is what it's all about.

Marty Chakoian

That’s right.  That is what it’s all about, helping each other, you know. If I had one message to share with prostate cancer patients, I’d say, ‘It’s tough, but you don't have to go through it alone.’

There is a community that will walk with you. Whatever this leads to and whatever happens, there are others who are going through it, who have been through it, and who will be there with you. That’s what we’re about.

Diane Mapes

Yeah. Pick up the standard and you keep running. Well, this has been great, Marty. I’m wondering if you have any other final thoughts that you’d like to share.

Marty Chakoian

The one thing that I really want to emphasize is shared decision making. We have a responsibility as patients to know as much as we can about not only our cancers, but about our values, about what’s important to us, about what risks we’re willing to take to maintain our quality of life and to communicate those effectively to our clinical care team.

And, you know, if we live up to our responsibilities and the doctors will live up to their responsibilities, we’ll end up with the best outcomes. They won’t be perfect outcomes. They never are, but they will be the best outcomes that we can have.

And we’re fortunate to live in this place, those of us who are here in the Seattle area, we’re fortunate to live in a place where all the medical options are good, you know? And so when guys are sort of struggling between, I don’t know whether I should do this or that, I tell them, You have to make a decision. And it’s troubling to make that decision. But once you’ve made the decision, you’ll feel so much better. And there really is no bad decision in this case.

Diane Mapes

That’s good to know.

Marty Chakoian

Yeah. Yeah, that’s my message. Put your arms around that decision, make the decision and then get on with your life. Because there is life after a prostate cancer diagnosis. 

Diane Mapes

I never thought I would be the person who was diagnosed with cancer. You said something when you first started, like nobody expects to be diagnosed. It’s just like that …

Marty Chakoian

Nobody expects the Spanish Inquisition!

Diane Mapes

Yes! Monty Python! Nobody expects Spanish Inquisition! Cancer’s a little bit like that. But I’m happy to have gotten through it and I’m trying to help other folks get through it if I can. You too, right?

Marty Chakoian

I’ve never thought of you as a space alien, but whatever your self-image is, you’re doing good work, Diane. So thank you for that.

Diane Mapes

Well, right back at you, Marty. It’s not easy, but we’re trying. Well, thank you very, very much for your time today, Marty Chakoian. It’s been really great talking with you about the work that you’re doing. You are kind of a house on fire.

Diane Mapes

Hi there. This is Diane Mapes with Fred Hutch News, where we’re going to be talking about survivorship some more. Joining me is Dr. Hanna Hunter, who is the medical director of cancer rehabilitation at Fred Hutch. She works to support patients through the entire cancer continuum during, after treatment. Welcome to the podcast, Dr. Hunter.

Hanna Hunter

Thank you so much for having me.

Diane Mapes

You bet. Now, your bio on Fred Hutch says “Fred Hutch takes on the responsibility of supporting patients throughout their entire cancer experience. They own it.” What do you mean by that? I found that to be a really interesting statement. 

Hanna Hunter

Cancer treatment is a little bit about treating tumors and the biology of treating the cancer, but so much more about treating the person, of understanding what their values are and what’s important to them and trying to live well with cancer during treatment and beyond. And I think we’re at a place in oncology research and care where we can take in those considerations that it’s not necessarily just about being disease-free, but doing it in a way that takes care of the whole person. 

Diane Mapes

Quality of life. That’s wonderful. Do you work with all cancer patients? Do you work just with solid tumor only, blood cancers only? Do you do work with everybody?

Hanna Hunter

We work with everybody. We've realized that patients, no matter what their disease type or what stage of treatment that they’re in, that they may experience mobility impairments or changes to their function. And sometimes it’s to the point where performing their activities of daily living are impaired, but sometimes it just a decreased ability to do things they enjoy. And so anytime mobility or function is affected, our rehab services can see patients before, during, and in survivorship.

Diane Mapes

That’s really interesting. So people will come to you even before treatment, sort of a pre-hab?

Hanna Hunter

I love the idea of prehab. I think it’s something that we can optimize or utilize in so many treatment modalities, whether it’s radiation or surgery or even chemotherapy. For some patients, even before they undergo a major surgery or undergo chemotherapy, I’ll see them to figure out what modifiable risk factors we can address, most often with exercise or even day-to-day changes to improve this idea of their resilience to be able to tolerate treatment better or be able bounce back from treatment afterwards.

Diane Mapes

That is really great. When I was diagnosed, I was in really good shape. I had been exercising and dieting to lose weight and boy, did it make a difference. I didn’t have any fatigue with radiation which was almost unheard of according to my radiation oncologist. So when people come to you, do they go through their oncologist? Are they referred by their care team? Do they self-refer? How does that work?

Hanna Hunter

I would say all of the above. Sometimes referrals come from other supportive care services that are involved in patient care, like a patient may see medical nutrition and in discussions about their intake or day-to-day activities. The registered dietician may learn that a patient might be insufficiently active or having difficulty with mobility and a referral may come from a supportive care colleague. Sometimes, the referrals are coming from the oncologist or the surgeons themselves in terms of recognizing some risk factors of frailty or decreased mobility. There’s been instances where patients have looked online and learned about cancer rehabilitation and what it can offer and will request a referral.

Diane Mapes

So they’re assessed as to are they able to eat? Are they able get enough nutrition? Are they able to swallow? Are they able to talk? You can even help with those things?

Hanna Hunter

Our rehab team is not just muscles or physical therapy, but we address any change in function and mobility, and that can be neurologic, it can be related to swallow and communication, it can be cognitive, as well as physical. And so our speech language pathologists are heavily involved, particularly in head-and-neck cancer treatment and being able to evaluate patients’ swallow and communications skills before, during, and after treatment.

Diane Mapes

That’s great, and you are dealing with a vast array of potential symptoms and side effects and aftereffects of cancer treatment. What are some of the common issues that people come in and seek help for?

Hanna Hunter

In survivorship, one of the most common symptoms that affects function is fatigue. For some individuals, fatigue improves with just time after treatment has ended. But for some patients, it is pretty life-altering in terms of being able to return to work, return to hobbies. So I would say fatigue is a very common one where I am seeing patients and trying to figure out what modifiable factors in their day, whether it’s sleep, nutrition, physical activity, we can optimize to try to improve their quality of life. Sometimes it may include work accommodations or physical therapy. So fatigue is quite common. 

And joint symptoms are also very common. 

Diane Mapes

Anti-hormones?

Hanna Hunter

Exactly, related to treatment, particularly hormonal treatment in the setting of prostate or breast cancer. It could be a medication side effect, or it could also just be related to something un-cancer related, but things flare up when patients are a bit conditioned, you know, or are undergoing chemotherapy. And so addressing joint pain, muscle, tendon, ligament injuries is quite common.

Diane Mapes

What do you do to address joint pain? I mean, that’s something that a lot of us have to deal with just as a matter of course, you know, as you get older. So what can you recommend for someone who’s going through menopause in their 40s, for instance?

Hanna Hunter

The umbrella term of joint pain is something that I try to address during the visit of figuring out what is actually going on. Is this related to arthritis? Is it due to a tendonitis? Is there a bursitis? Like, what are we trying to address? That’s part of a key component of the visit often, figuring out what the pain generator. Because if we can figure that out, then we can come up with an exercise plan of a type of exercise that’s going to be helpful to improve the tendon health. Or different injections or procedures that might be able to address arthritis or what medications might be the most helpful.

Diane Mapes

And movement is actually helpful too, something like yoga and stretching?

Hanna Hunter

Absolutely. And understanding what is causing pain to begin with, like what component of the joint. What type of muscle injury can help guide that exercise prescription of understanding what muscles to stretch, what type of exercise like strengthening or aerobic activity might provide the most bang for their buck.

Diane Mapes

You can analyze and separate those strings and figure out exactly what is going on, where we need to put the attention to help fix this issue and get this patient feeling better. That’s wonderful. Do you get a lot of people who have issues with lymphedema, which is another common side effect of cancer surgery, where they’ll remove lymph nodes? You can help with that?

Hanna Hunter

Yes, we are very fortunate to have an awesome lymphedema therapy team. Many of our physical therapists are certified lymphedema therapists as well as myself and so when patients are presenting with the risk of lymphedema from a full axillary lymph node dissection or presenting with initial signs and symptoms of swelling, we’re able to provide that education as well as the treatment modalities that can include bandaging and wrapping, prescribing appropriate compression garments, and teaching manual lymph drainage. We are so glad that finally, I think it was 2024 when the Lymphedema Act was passed, in terms of coverage for garments, which can be very expensive and need to be replaced every six months in some, in cases, and patients need multiple compression sleeves, one to wear, one to wash. And so, especially over the course of a lifetime, that’s a huge cost that we can hopefully offload.

Diane Mapes

That’s important. And there are also lymphedema surgeries that are being done now. I know the University of Washington is doing surgeries and they have a great team that are able to transfer, like lymphatic node transfers.

Hanna Hunter

Exactly, there are multiple different types of surgical interventions now for lymphedema.

Diane Mapes

And I think some of them are even happening at the time of initial cancer surgery.

Hanna Hunter

Yes, you read my mind! Our goal is often trying to treat or prevent worsening of symptoms while understanding that lymph nodes need to be removed for the cancer treatment itself. And so if we can prevent things like infection or swelling being so impairing that it's limiting.

Diane Mapes

When I had to have my double mastectomy, I told my surgeon, please just do the sentinel node biopsy because I was really hesitant about having the full axillary node dissection because I had read on lymphedema and I knew a lot about it. And it was interesting, right before I had my breast cancer surgery, a big study came out and said it’s okay to just do sentinel node biopsy. It’s safe. So that was a huge, huge benefit to have that research, that evidence base to know that I was making the right decision. 

This is one of the things that Fred Hutch will do, too. We continue to research. We continue to look at how you can minimize the harm, right?

Hanna Hunter

Exactly, and and that has really changed the surveillance as well as education for lymphedema. And there are definitely cases where we still need to remove a lot of lymph nodes, but we’re in the post age of knowing the benefit and risk reduction in sentinel lymphatic axillary dissection. And our plastic surgeons, as you mentioned, are able to do some interventions during surgery. Our goal is to try to optimize mobility and not have patients feel like cancer treatment and surgery is a trade-off in terms of quality of life and what they’re able to do. In some regards, we can’t necessarily reverse the fact that radiation or surgery has happened, but our goal is to treat that tissue, try to get scar tissue as loose and mobile as possible, re-teach muscles how to do their job. 

Rehab is not necessarily rigorous exercise or huffing and puffing on a treadmill. But this idea of neuromuscular retraining, trying to retrain muscles and tissue and skin to behave as normally as possible to limit impairments.

Diane Mapes

I love that you retrain muscles, you teach muscles how to do their job. I think that is wonderful. The human body is amazing in its capacity to heal. I have seen this over the years and over 6 or 7 surgeries that I’ve had, most of them cancer related. It’s kind of miraculous. We’ve been talking a lot about the solid tumor and the after effects and late effects.

What about folks who have transplants and are dealing with GVHD, graft versus host disease. Do they come to you?

Hanna Hunter

We often do see patients who are followed by the long-term follow-up team after bone marrow transplant, particularly individuals with graft-versus-host disease with involvement of skin or fascia or joints. Our goal is often to try to limit contractures or joint limitations in range of motion. So for patients who experience sclerosis or changes to skin and fascia or muscles due to GVHD, often our goal is to figure out how they’re able to do their daily activities within their current limitations. Sometimes we provide bracing to help with stretching or help with ankle range of motion for safe mobility or walking. And our physical therapy team and even our lymphedema therapy team is often involved in helping to manage swelling or lymphedema that can also incur in those cases.

Diane Mapes

They can have an array of side effects and aftereffects because they’ve basically had an immune system transplant, right? And the body is trying to figure out, ‘Is that me or is that somebody else?’ You know, and our immune system is always on alert for eliminating that something else.

Hanna Hunter

And the physical and metabolic changes are tremendous where fatigue is very real, but patients can just be so much more deconditioned compared to their pre-transplant baseline in terms of loss of muscle mass from the transplant itself, from steroids, which are a common medication given to patients during that time and the side effect of that is tremendous muscle quality loss, especially in proximal muscles. So muscles close to the trunk of the body, like shoulders, chest, thighs can take a pretty big hit and we’re often trying to find strategies that patients are able to feasibly do in the setting of a bajillion health care appointments, being immunocompromised to get some of that muscle back, especially when commercial gyms may not be an option.

Diane Mapes

No, if you’re immunocompromised, you’re not going to be able to go to a commercial gym and hang out with a bunch of people coughing and breathing on you. 

One of the things that I have found interesting, just because I was diagnosed and treated about 15 years ago, is I can see a transition in how they’re thinking about cancer rehabilitation over that time. They were just starting to talk about how exercise might be okay after cancer.  I was all in. I kept bugging my surgeon about when I could go run again. And she’s like, You are still wearing drains, Diane. You’ve got surgical drains attached to you! So I had to wait until I had the drains out before I could start running again. And it was hugely beneficial to get back out there and be able to exercise. And it was really, as I mentioned earlier, so beneficial with regard to cutting back on the side effects of treatment.

So research has really come around and is embracing the idea of working out and being strong, not hurting yourself with working out, but being able to exercise, maintain strength, maintain muscle, and how important that is to overcome cancer and get through treatment.

Hanna Hunter

Yes, and we’re learning more and more about how important that is, not just in terms of improvement in patient’s physical function, but the ripple effect on, yes, exactly mood, quality of life, and so many other factors.

Diane Mapes

Confidence, feeling strong, empowered, feeling like you could beat the cancer.

Hanna Hunter

And so it’s so much more beyond just muscle health like you’re describing and your story is so resonant with many other patients and physical activity is one of the things that patients have a little bit of control over in the setting of appointments and infusion times and there’s kind of some power in that.

Diane Mapes

Yeah, I found it to be very empowering. After cancer treatment, I actually took up boxing, took a boxing fitness class, and I found that to be a great way to work off a lot of anger, stress, and just a lot of frustration.

What do they say? Motion is lotion.

Hanna Hunter

Yes, that’s one of my favorite phrases. I say that all the time. It’s true. It doesn’t have to be vigorous activity, but finding that right dose that’s helpful. And you’re totally right in recognizing the shift in the past 10 to 15 years. There’s actually been a trend of words like rehabilitation, physical therapy, embedding into guideline-directed care which wasn’t always the case, but we’re understanding its benefit.

In 2022, the American Society of Clinical Oncology published its first exercise guideline that recommended that oncologists can recommend physical activity during active cancer treatment. And while that might not sound groundbreaking, that took years of exercise research to get to the point where it’s being recommended and deemed safe. 

And also last year, one of the most landmark trials in exercise oncology was published. It’s called the Challenge trial and it was a study in colorectal cancer patients. It’s a randomized controlled trial that took place over 50 centers, I think, in 6 different countries. But it was the randomized control trial of exercise versus education. In colorectal cancer survivors over three years, and the exercise group not only had improvement in physical activity but had improvement in overall survival and decreased disease recurrence.

Diane Mapes

This is another argument for exercise that I have totally embraced!

So I’m wondering, are they testing patients before treatment to make sure that they can metabolize these treatments?

Hanna Hunter

That’s a great question, and I think we’re learning more about this idea of personalized treatment with a precision medicine approach. And when it comes to dosing, I think it’s been critical that it’s not necessarily just the initial plan, but ongoing follow-up over the course of multiple cycles to provide that proper education and counseling to patients.

So, please let us know that if any of these symptoms are happening so that we can adjust the dose of your medications rather than having patients, again, experience this trade-off of like, ‘Oh, I’m experiencing neuropathy or pain, but this is the trade-off for the cancer treatment.’ Our goal is for less of that to happen, but more so for being mindful of patients’ potential side effects and quality of life while providing dose-appropriate care.

Diane Mapes

I’m glad you brought up neuropathy, because I think that that is another big issue that a lot of patients going through chemo have to deal with. What can you do for folks dealing with neuropathies?

Hanna Hunter

So with peripheral neuropathy, I would say number one, it’s really important to make sure our medical oncologists who are prescribing the agent that might be causing the symptoms is aware and adjusting the dose if that’s an appropriate thing to do.

But from a rehabilitation standpoint, when patients are experiencing numbness, tingling or nerve pain, we try a multifaceted approach. One is addressing the pain with different types of modalities and medications. And that can range from topicals, to oral medications, to desensitization strategies, to calm down that nerve, nervy pain. But also when numbness and tingling is affecting our hands and feet, it affects our fine motor skills. It affects our balance. And so we want to make sure that patients aren’t falling, that they have proper education and counseling on things that they can do to try to maintain their balance. Their walking and ability to sign their name, do buttons, zippers. And so that’s something that we look out for and evaluate during a peripheral neuropathy visit.

Diane Mapes

It’s really crucial to let your team know if you are having side effects that are keeping you from living your life. I mean, I know that there are side effects with cancer treatment, but no one expects people to suffer through cancer treatment. There are many workarounds. They can reduce the dose. If it’s a chemotherapy, you want to work with your oncologist to nuance the treatment so it works for you. Wouldn’t you say that’s true?

Hanna Hunter

I think that’s so important. And I think a key component of what I’ve seen in terms of care at Fred Hutch, and I’m grateful to our supportive care colleagues too, so that we are addressing these symptoms as they come up, whether it’s with acupuncture, rehab services, medical nutrition, the psychosocial services that are available to support patients during, as well as in survivorship.

Diane Mapes

And sometimes people are going to be in survivorship for maybe 10 years or more. I know with the long-term follow-up, there are people in there for 40 years, you know? And it’s really beneficial for our researchers to follow patients after their treatment, to finesse and tweak things so maybe people don’t have to have such toxic treatment in the future. It’s an ongoing research project, but you really can do a lot. The oncologists and the team can do a lot to alleviate suffering.

Hanna Hunter

It is our hope. It can be psychological, it can be physical. That is why our supportive care services exist. They’re not just helpful things, but they’re evidence-based tools that we know can help mitigate side effects to help patients live well during and after. And you mentioned research. I think it’s neat to see that there’s research going on for cure and survival, but also that quality of life realm. In survivorship, are we getting patients back to their hobbies, back to work? And back to a quality of life that’s acceptable to them.

Diane Mapes

So we’re learning a lot and part of what we're learning is less is more when it comes to some cancer treatments. Dr. Hunter, do you have any final thoughts that you want to share on survivorship, on what you and your colleagues in rehab can offer patients and survivors?

Hanna Hunter

I would say survivorship does not have to start with completing treatment. That survivorship interventions like rehab services and physical therapy, lymphedema therapy, they can go hand in hand with treatment as well as in survivorship. And I would want patients to know that our team, particularly our rehab team, really wants to support patients at all stages of their cancer journey to set them up for success in survivorship.

Diane Mapes

That’s wonderful. Well, thank you so very, very much for joining us today, Dr. Hunter. Again, this is Diane Mapes with Fred Hutch News and our podcast, Bench to Bedside and Beyond. Thanks for joining us.