® magazine, has been with the team since October 2020 and has covered health care in other specialties before joining MJH Life Sciences. She graduated from Emerson College with a Master’s degree in print and multimedia journalism. In her free time, she enjoys buying stuff she doesn’t need from flea markets, taking her dog everywhere and scoffing at decaf.

Darlene Dobkowski, MA

CURE and Kidney Cancer Association on navigating kidney cancer 

Treating the Whole Patient: Navigating Kidney Cancer

In collaboration with the Kidney Cancer Association, CURE® recently hosted the “Educated Patient® Webinar: Treating the Whole Patient: Navigating Kidney Cancer,” hosted by Darlene Dobkowski, Associate Editorial Director for CURE®.

During the webinar, experts shared their insights and experiences. These individuals included: Dr. David A. Braun, from the Yale Cancer Center; Claudia Tatum, from the Kidney Cancer Association; and Steven Edwards from the Kidney Cancer Association.

The webinar addressed the following topics and questions:

What are the signs and symptoms of kidney cancer, and how is it diagnosed?

What are the stages and types of kidney cancer?

What should patients ask their care teams?

What advice would you give to patients who are going through kidney cancer.

What are the therapy options for patients with kidney cancer?

Are there any side effects associated with these options? Are they easily manageable?

Are there any therapies on the horizon for patients with kidney cancer?

An overview of Edwards’ treatment experience.

What does it mean to treat and care for the whole patient?

How can patients have a positive experience when discussing therapy options with their care teams?

Why is it important for patients to receive information up front as a means of support?

How can cancer care teams focus on the entire patient rather than just the disease? Why is this important?

How can these tactics potentially improve a patient’s quality of life?

Why was it important for you to be treated as whole patient? Was there a certain moment that has happened to you that stands out?

For more news on cancer updates, research and education, don’t forget to 

subscribe to CURE®’s newsletters here.

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Treating The Whole Patient: Navigating Kidney Cancer

During breast cancer survivorship, it's important to discuss side effect management with care teams.

Having an open conversation with the care team is important to address side effects related to the treatment of metastatic breast cancer, an expert explained during a presentation at the CURE Educated Patient® Breast Cancer Summit.

Patricia Jakel, oncology nurse consultant and associate professor of nursing at UCLA School of Nursing, and co-editor in chief for CURE’s sister publication, Oncology Nursing News, is also an advocate, as she is a breast cancer survivor who finished treatment a year ago.

Jakel said that side effect management should not just take place during active treatment.

“Survivorship should start at the minute that you’re diagnosed, because these side effects are going to continue,” she said. “I’m a year out, and I can talk to you about fatigue from a personal standpoint, I can talk to you about nausea.”

When Jakel asked the audience how cancer-related fatigue feels, some responses she received included not being able to get out of bed, feeling lethargic, sleeping 10 hours and feeling like you can sleep another 10 hours. The effects of cancer-related fatigue go beyond the physical impact, as it can also affect a patient’s emotions and cognitive abilities, among others.

There can be several explanations for cancer-related fatigue including biochemical causes, proinflammatory cytokines from treatment and sleep disorders. Jakel added that anxiety and depression can keep patients from sleeping well. Other causes of fatigue involve the treatment itself, comorbid conditions, malnutrition, anemia, decreased activity and pain, some of which are associated with the average age of breast cancer diagnosis.

“The average age of breast cancer [diagnosis] is 62,” Jakel said. “I know I have a lot of lovely young survivors in the room, but the average age is 62. So we’re already having problems with sleeping, and we already have comorbid conditions.”

Jakel highlighted the importance of having the cancer team assess your fatigue using a scale from 0 to 10.

“Make sure when you come into the clinic — doesn’t matter if you’re on active treatment, you’re newly diagnosed or you’re a survivor — have people ask you [about your fatigue],” Jakel said. “We should be asking you about your fatigue. How bad is your fatigue? What makes it better? What doesn’t? It should be part of our assessment.”

Several tactics may help with cancer-related fatigue including exercise, good nutrition, increased water intake and potentially some complementary therapies like massage, acupuncture and cognitive behavioral therapy. Some pharmacologic approaches may also be considered like antidepressants, although psychostimulants may not be used as much since steroids may interact with cancer treatments. Supplements may also help with fatigue, although they should be discussed with the care team.

“Really talk to your providers, talk to your [physician assistant], your nurse practitioner, your physician, because not all supplements are safe with what [medications] you’re taking,” Jakel said.

Although nausea and vomiting are common side effects of cancer treatment that can impact a patient’s quality of life, Jakel noted that patients rarely vomit nowadays.

“We have things that we can do, but the chronic nausea can be a problem,” Jakel said. “It happens because of serotonin. Serotonin is released because of your treatments, because of radiation therapy, because of your cancer and because of anxiety. Serotonin goes up to your brain, stimulates your vomiting center, and your nauseated and/or vomiting. When we block those pathways, that’s when things are really successful.”

Some risk factors for nausea and vomiting include medications like certain chemotherapies, physical causes, history of morning sickness and motion sickness, metabolic causes and being a woman.

“It really depends on the type of medication you're taking,” Jakel said. “You think, oh, these oral medications, I can take these for my breast cancer. Guess what? A lot of them have nausea and/or vomiting associated with them. So you still have to be vigilant in making sure you're getting the proper treatment.”

There’s a variety of different antiemetics (drugs to treat nausea and vomiting), one of which Jakel said patients should be getting any time they are receiving any kind of treatment: the serotonin antagonists, or the 5-HT3s. There are other options as well including antipsychotics like Zyprexa (olanzapine).

“People are afraid of it because it’s labeled as an antipsychotic,” Jakel noted. “It works wonders for chronic nausea. You take it at bedtime, and it actually helps you sleep.”

She added that drugs like the 5HT3s, for example, can cause constipation.

“What happens when you get constipated? You have more nausea, you feel worse, your stomach hurts more. So be aware of that,” Jakel said.

There are some natural options for patients who are interested in going that route for nausea/vomiting relief including ginger, lavender and peppermint.

Another side effect of breast cancer treatment is constipation, which can also be caused by a presenting symptom of cancer, tumor progression or may possibly be unrelated to cancer or treatment.

Although laxatives can help relieve constipation, Jakel made a note about the stool softener Colace (docusate sodium).

“Colace really doesn’t work by itself,” she said. “You have to do a combination. You have to do a stimulant, a stool softener. Sometimes patients like to take fiber. What do you have to do if you take fiber? Drink water. … You have to drink so much water because that fiber will turn into cement in your colon. So do a combination.”

Besides pharmacological interventions, patients may also find benefits in increasing physical activity, trying to maintain usual bowel habits during hospitalization, and increasing fluid/fiber intake.

Approximately 50% of cancer survivors report ongoing problems with sexual functioning, Jakel mentioned during her presentation. Despite this high rate, Jakel mentioned her personal experience with how many clinicians discussed this side effect with her.

“I was a patient at UCLA for seven years,” she said. “How many providers do you think asked me? Now, a footnote, they were all my friends, they were all my coworkers. But in seven years, how many of them do you think asked me about sexuality and sexual function? Zero. … And I don’t think it’s different just because they’re my friends and they’re my coworkers. Nurses are really bad at it.”

The incidence of side effects can affect both men and women. In fact, 64% of women report no sexual desire, 48% report low desire and some women reported dyspareunia, or painful intercourse due to vaginal dryness, Jakel discussed.

Some contributing factors to this side effect include endocrine manipulation with aromatase inhibitors and tamoxifen, body image and early-onset menopause.

“We can recommend lubricants, but you should talk to your provider,” Jakel explained. “Even things that say they don’t contain estrogen sometimes have a pseudo-estrogen in their formulary. So you don’t want that to happen. And you can have some low-dose estrogen. Again, it depends on your type of cancer and a conversation [with your provider].”

Some side effects from endocrine therapy can include hot flashes, menopausal symptoms, blood clots (although rare), loss of libido, osteoporosis, joint pain and vaginal dryness. These side effects may decrease long-term adherence to oral endocrine therapies, but some approaches that may be helpful for joint pain include weight loss, acupuncture, exercise and integrative therapies like yoga. If the patient does not respond after two or three lines of therapy to address joint pain, a referral to a specialist may be needed.

“I remember sitting in a restaurant in Portland when I first started when I first started letrozole (Femara),” Jakel recalled. “I jumped around [treatments] because I had a recurrence. I was on letrozole crying because my knees hurt so badly. I thought it was the boots I was wearing. Talk about denial, ‘Oh, it must be these boots I have on.’ No, not so much.”

She added that an east-west medicine doctor she went to for acupuncture recommended tart cherry juice for the joint pain caused by aromatase inhibitors. Jakel said taking a supplement of tart cherry juice helped her joint pain a lot, but strongly urges a discussion with providers before considering this as an option.

Articles

During the CURE Educated Patient® Breast Cancer Summit, an expert discussed her professional and personal experience with side effect management in metastatic breast cancer.

Addressing Side Effects of Metastatic Breast Cancer Treatment With Open Conversations

Kelly Thomas, a survivor of triple-negative breast cancer, and Emily Beard, patient advocate and oncology nurse, spoke with CURE® about ways care teams can communicate about exercise.

Navigating one’s breast cancer journey, from diagnosis, treatment, survivorship and everywhere in between, can be difficult for patients, but prioritizing physical and mental health may help patients focus on their quality of life.

During a panel discussion at the CURE® Educated Patient® Breast Cancer Summit, Kelly Thomas, a triple-negative breast cancer survivor and patient advocate, and Emily M. Beard, oncology nurse, patient navigator and medical advisory board member for Living Beyond Breast Cancer, discussed how small efforts to improve one’s physical and mental health can make a huge impact on a patient with breast cancer.

Kristie L. Kahl: OK, so I wanted to start it off with Kelly, if you could maybe just briefly tell us about your personal experience with maintaining physical health during your cancer treatment? And were there any specific strategies or exercises that were helpful for you?

To be honest, it was difficult, exercising through breast cancer. I was 33 years old when I was diagnosed with stage 3 triple-negative breast cancer. And going through triple negative breast cancer treatment, exercise was very limiting. Getting up and doing daily tasks were challenging. And so I really had to rethink what exercise was during treatment. And sometimes exercise for me was just getting up off the couch, walking out my front door, getting the mail from the mailbox and coming in.

Kristie L. Kahl: And I think even that simple task — we talked about how exercise is limiting, and we also want to talk about mental wellbeing here. So Emily, how does the physical side that Kelly had just mentioned, and mental wellbeing affect a patient before, during and after a diagnosis? And can you give any specific concerns or challenges that we commonly see?

 Sure. Thank you for having us. This is a really important conversation. So I just appreciate the chance to be here. I think it really is everything, I think for the physical and emotional, we often forget about quality of life as we're going through treatment and talking to patients about how we're going to prolong their life, how we're going to affect long-term cure. And we sometimes kind of forget that whole conversation about quality of life. So I'm really happy to be able to talk a little bit about that.

I think from a mental perspective, it's very personal. Some people are immediately in warrior mode and want to just jump in and know everything and get going. And some people are just really overwhelmed. And that anxiety and that kind of shock and fear is the first thing. So I think sometimes just to take a minute and just think, “OK, where am I? What are my resources?” And then make sure that there's a communication that you're comfortable with, with your team so that if there are resources needed for mental health, that those are there because a lot of patients will tell me years into their treatment, they’ll say, I didn’t know I had access to a social worker, I didn’t know I had access to a psych-oncology specialist at my clinic. And those folks are almost always available, but sometimes we just don't think about it when you're first diagnosed. There's so much going on that we're prioritizing care. So I just think, just making sure that, that quality-of-life conversation is happening with your team.

Then from a physical standpoint, again, it's very personal. And I think we all cope differently. And we all exercise — or physical activity looks different for everybody. But I do encourage people to move. If you're already moving, keep moving. If you're already doing an aerobics class or taking walks, keep doing that. If you aren't somebody that is moving, the benefits are great. We have lots of evidence to show that exercise, in particular, is not only good for your mental wellbeing, but actually good to decrease your risk of recurrence. So somebody who is able to be physically active is also doing something proactively to help their long-term wellbeing. That doesn’t mean running a marathon. It means — like you said, Kelly — getting up, or getting out to the mailbox, or taking a walk. Maybe if you have a dog or a child, take a walk with your family. It doesn't have to be a 17-minute mile. It can be a 28-minute mile. No race.

I think that's so important, just to speak on what you just said. When we think about exercise, and when I say exercise, I have a different definition in my head, which everyone in the room may have a different opinion of what exercise was. Before cancer, I was doing HIIT training, high interval. My nurse is telling me I need to be active and exercise while I'm going through treatment, and I'm thinking, “Well, there's no way I could go to the gym right now. There is no way I can run on the treadmill.” And I think maybe we need to change the word “exercise” to just “How are you moving your body today?”

 Because the goal is to get your heart off of a resting rate. What can you do today to move your body? And what can you do that is enjoyable? I think that's really the secret sauce to finding something that you enjoy with exercise, and it doesn't feel like a chore.

Kristie L. Kahl: This is for both of you. How can the medical community and patient advocates collaborate to ensure that we're bringing this together, and we're making sure we're emphasizing health and wellness, and offering resources so that we don't have a patient who's saying three years in, “I didn't even know I had this?”

I think there just needs to be a flat-out conversation. When I was going through treatment, going to the hospital to get chemotherapy every week, every other week, there was a lot of conversation about how to deal with side effects and how I’m feeling today. But there really wasn't a big health and wellness conversation. I think the conversation needs to be had. And then when you are having the conversation, it needs to be done carefully. I remember going into my breast surgeon’s office, and the nurse there that I would always meet with before I would see my breast surgeon would say, “Are you exercising? You need to be exercising.” So it was like, I'm going through so much right now. I'm exhausted, I can't even empty the dishwasher, and having somebody yell at me because I wasn't exercising. So I think it's really important for medical professionals to go about that conversation very carefully because it's really going to make a mark on that patient, whether they see exercise as a positive or negative. Sit down with the patient, and like I just said before, tell me how you're moving your body lately. And I think between that and you need to be moving your body is not going to work. It’s not going to help anybody.

Agreed. And I would say, too, I think that's such great feedback, and it hurts my heart as a nurse that, that’s the conversation. I never want that to be the case.

I think we really have to be collaborative and meet each other where we are. I speak from experience, I started dancing. I danced as a kid and I loved it. It brought me joy. And when I turned 40, one of my friends said, “What brings you joy?” And I was like, “I wish I had never stopped dancing.” So they were like, “Get back to dancing.” So I'm in a weekly adult hip-hop class, and it's so fun. And I tell patients about that because I want to give permission to people to just get back to whatever it is that you love to do. So I don't do it because I want to perform. I don’t do it because I’m particularly good at it. But it does bring me joy, and it definitely increases my serotonin levels. But I think for patients, especially, it can be a great opportunity for community as well. 

There are programs in many communities, through the YMCA and community groups, that we can collaborate, to encourage survivorship. I tell people all the time that tell me, “I’m not a support group person. And I don’t want to go to a support group.” Going to a yoga class modified for survivors is a great way to have a support group experience without having to sit in a circle and go to more traditional groups. [I have] nothing against traditional groups, because I think they can be great, but not everybody feels comfortable in that setting. I have lots of patients who tell me, “I don't go to support groups,” but they're at that Tai Chi class or they’re at that mindfulness class through the cancer support community or the YMCA regularly. So I think that's another way to reframe the conversation and make sure that we're making lots of different opportunities available.

Kristie L. Kahl: Speaking of support groups, I know we've talked a lot about the exercise portion [of this summit]. But even with mental health, we all know — I'm sure — from experience in this room, a cancer diagnosis is overbearing, then you have to deal with treatment and things like that. So the entire process obviously takes a toll on somebody's mental health. What advice do you have for when you're experiencing those challenges, or it's just a bad day or a bad week through the cancer journey?

When I'm having a rough day, I actually make a decision to get on my Peloton. There is just that rush of serotonin that you get after you do a workout. You do genuinely feel so much better. And, as cliche as it is to say, you're never going to regret a workout.

I would say the same thing. For some people, the mental health piece is just taking a break, it's just a rest. Some of us are just go, go, go all the time. So taking that moment to just sit, center yourself and breathe, have a moment of mindfulness.

I also encourage patients to journal, even if they don't have a specific diary, just to sit down and maybe when they need to get their thoughts together, put them down on paper, typing them on the computer, it can be a blog, it can be something no one ever sees. It's not necessarily to share, although sometimes that can also be really helpful. But I think just to have lots of different tools to address those and just to normalize the conversation.

I mean, just having conversations like this today, to just say, in patient care, we need to do a better job of asking the questions, making space for these conversations, so that patients feel comfortable coming forward and saying, “I’m really having a hard time. I’m having a really hard time feeling upbeat or I’m really feeling hopeless.” It's very hard to articulate that. And a lot of times, in my nursing role, I like to be able to say to the patient sometimes and check in, “Hey, how's it going? I'm noticing you just don't see yourself today. What's going on?” Ask about a relationship, because so much of — again, going back to quality of life, it could be that, because of side effects from treatment, you might be having fatigue, you might be having sexual side effects that are affecting your relationship and your wellbeing. And so if you're able to have that conversation with your provider, I think that's a really important, normalizing conversation for us to have. We should always be asking about your quality of life and your symptoms and addressing those. So if that's not a conversation that you're having on a regular basis with your team, then you may want to think about why that is and who on that team you feel comfortable going to, to chat about those issues.

Kristie L. Kahl: I know you mentioned the social worker earlier, and obviously we want to treat the whole person throughout this experience. So how do you collaborate with other health care professionals? And which professionals should patients be asking to see so that way, if our audience wants to learn more about health and wellness at their institution, who should they be asking for?

These days, most programs — every program is different. So I work at a large cancer center with multiple locations. So each location looks a little bit different. But in terms of the team, our patients have access to mental health through our social workers, through the psych-oncologists. We can also refer out, so if we have a patient who's dealing with something specific, somebody who might be having trauma, PTSD from earlier trauma or someone that’s dealing with a relationship issue and maybe does need more intensive sexual therapy with their partner or by themselves. We can make those referrals. Most cancer programs have a survivorship coordinator, someone that maybe has survivorship in their title, it might be a mid-level provider, APP, somebody that’s running the survivorship clinic or it could be the nurse, it could be the chemo nurse if you're still in active treatment. If you're out of treatment and coming back for follow-up, then it may be the oncologist that you're seeing. But I think asking for that is totally appropriate. You can say, “I’m having some difficulty with coping and just curious about what resources are available for survivorship here.”

And then beyond that, we heard from Tigerlily this morning, we heard from some of the patient advocacy groups that are great and might be local, but also might be national. I work closely with Living Beyond Breast Cancer. Certainly, Komen has resources. There are many community resources, depending on where you are. We have a Cancer Support Community location where I am, and so we refer a lot of our patients to them because they do a great job with all of those resources from the classes, educational classes, to also mindfulness and regular support groups, as well as things like workshops on Tai Chi, journaling, art therapy, things like that. They also have support for caregivers. I always want to take care of my caregivers too. I see a lot of you in the room. You are all the unsung heroes of this whole story. And I think that partnering with your patient, with your survivor is really important to provide that support, whether it's going for a walk together, encouraging support group attendance or modeling that in yourself to go out and take a walk and say, “Hey, I’m going out for a walk. Would you like to come with me?” Because I think it's really important to build that, make that normal and make that communication happen consistently.

I love hearing about all these survivorship programs at different facilities. But quite honestly, not every facility does have something like that. So I think it's very important to have a conversation with your medical team and see if there are any opportunities that support mental health and physical activity. I say this all the time on social media, there's never a good time to have breast cancer. But I'm grateful that I had breast cancer during social media, where I could connect to others via my phone. Nowadays, you can’t even open up Instagram without finding some sort of breast cancer group. Six years ago, when I was going through breast cancer, I had to actively search hashtags to find people that had triple negative like me. So I think social media is a great avenue to go down to see different organizations like the Triple Negative Breast Cancer Foundation, Tigerlily and Living Beyond Breast Cancer. There is so much online. No matter where you may live, or where you reside, your hospital may not have a survivorship program or a gym or fitness, in those terms, but there are so many opportunities online. Nothing is more inspiring than seeing other survivors out on social media, moving their bodies. It influences me to get up and move my body. So I love being a part of the active community on social media in the breast cancer community.

This panel session was sponsored by Novartis.

This transcript has been edited for clarity and conciseness.

A patient advocate and oncology nurse discuss the importance of physical and mental health during the breast cancer journey during a panel session at the CURE® Educated Patient® Breast Cancer Summit.

Rethinking Physical and Mental Health Throughout the Breast Cancer Journey 

For patients receiving chemotherapy, using a virtual reality headset may help patients alleviate pretreatment anxiety, said an oncology nurse.

Virtual reality (VR), which typically uses a headset to simulate experiences, can play a role in alleviating pretreatment anxiety in patients with cancer or help provide comfort to patients on palliative care and serve as an educational tool for both patients and providers.

In a recent interview with CURE®’s sister publication, Oncology Nursing News, Emery Bergey, a clinical nurse specialist at Moffitt Cancer Center in Tampa, Florida, discussed how her center uses VR in patient care.

How is VR currently being used at Moffitt?

VR is currently being used as a way to relieve patients’ anxiety and stress, in particular, during procedures [and] during chemotherapy to reduce anxiety. We actually did a project here at Moffitt, where we provided the patients with VR headsets on their first day of chemotherapy treatment, when everything's very overwhelming, when they're very scared. And when we put that headset on, we noticed patients immediately calmed down.

There was one patient [who] stated that she was feeling tremors. When she put the headset on, her tremors ceased, and then they didn't come back after the activity was completed. That was very rewarding.

It's also being used in palliative care settings. It’s associated a lot with that concept of a “good death.” Sometimes patients are hospitalized and providing them the opportunity to be on a beach or somewhere that brings them joy, that can really help with that peaceful passing. In addition, there's a program that allows family members the opportunity to record their voices or to be present through an avatar or their photos, so the patient can actually see that on the VR headset. So that's been really, really peaceful.

It has also been used for patient education, specifically in radiation oncology. It is a really cool system, where they can upload the patient's scan — so a CT, MRI — and they can see a four-dimensional visualization of their tumor. Especially if it's a complex tumor, like if it's around the carotid artery or the spine, they can see where exactly the treatment beams are going to come in, where they might see side effects, and conceptualize that a little bit easier.

Going back to what you mentioned, how patients can use VR to pretend they’re on a beach or somewhere peaceful. What do you think it is about that approach that decreases stress in patients?

A lot of it is our brain being able to focus on one source of stimuli at a time. When we're directly visualizing that particular scene, when we're immersed in the sight and sounds, it takes that attention off of anything that might be causing us pain and anxiety, anything that's distressing in the environment. It's taking us away and putting our focus elsewhere.

Can this technology be used for all patients, or are there certain patients who may not be suited for this?

It can be implemented with pediatric and adult patients across the spectrum of oncology care. There are a couple of considerations. For example, if a patient is experiencing a mental health condition that causes them to have visual and auditory hallucinations, or they may be sensitive to visual and auditory stimuli, if they have vertigo or balance issues, moving around, just everything follows them. It might be a little bit inappropriate if they're having acute episodes of nausea and vomiting, where that motion can irritate them, or if they have any sort of visual difficulties.

Our biggest concern with VR is patient safety. A lot of those headsets have a lockout feature, where the nurse can establish a boundary. And if the patient moves or tries to ambulate and steps outside of that boundary, the simulation goes away, and all they can see is the floor. That is meant to discourage patients from ambulating while all of that stuff is going on and potentially putting them at risk for injury.

Is VR being used in many institutions or are we just scratching the surface?

I know a lot of nursing schools have implemented it for clinical skills-based things. A lot of oncology centers have used it with their pediatric population undergoing radiation therapy, because sometimes children struggle to stay still on the table, as well as adults undergoing procedures in an interventional radiology setting, and in pre-op before they're going into their surgical procedure.

With the palliative care aspect, it's being used there quite a bit. Especially with our geriatric patients, they do a lot of remembrance therapy. And then putting those VR headsets on them before sleep can also help increase their sleep quality.

An oncology nurse discusses how virtual reality can be used to educate patients and decrease stress before treatment or while in palliative care. 

Darlene Dobkowski, MA

Treating The Whole Patient: Navigating Kidney Cancer

Addressing Side Effects of Metastatic Breast Cancer Treatment With Open Conversations

Rethinking Physical and Mental Health Throughout the Breast Cancer Journey

Virtual Reality Can Ease Pre-Chemotherapy Anxiety

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