On All Fronts: Finding ways to restore quality of life for cancer survivors with lymphedema and other conditions
Robert Carver Bone, MD, beat cancer, but there was another foe lurking behind him. He was diagnosed with Stage 4 head and neck cancer that was successfully treated with chemotherapy, radiation and surgery, but he wasn’t the same as before. “I couldn’t open my mouth to take a bite of food, my neck was tight and my shoulder was dysfunctional,” said Bone. As a physician, college professor and longtime community leader, Bone leads a vibrant and active lifestyle from his home base of Lebanon, Tennessee. He doesn’t have time for physical limitations.
Bone is one of many people with cancer who learn that beating the disease doesn’t always mean a return to life before it. Chemotherapy, radiation therapy and surgery save their lives but leave them with chronic ailments that range from irritating to crippling: bad posture, musculoskeletal problems, difficulty breathing and lowered self-esteem.
Many suffer from lymphedema, swelling caused by retained fluid in a compromised lymphatic system that can make it difficult to breathe or move normally. These are symptoms that cancer survivors are often told to live with for the rest of their lives, periodically going to the doctor if the swelling becomes too great.
Such a status quo is not good enough for Sheila Ridner, PhD, MSN, RN, Martha Rivers Ingram Professor of Nursing at Vanderbilt University School of Nursing (VUSN). Ridner is passionate about finding better treatments for cancer survivors with chronic conditions, particularly for those with lymphedema.
“These may be things that we can fix,” she said. “It’s not like you just have to accept that people have to be impaired after having head and neck cancer. We don’t have to accept that for them. We do not have to accept that’s just what happens.”
She enrolled Bone in an ongoing study that is considering whether yoga can alleviate symptoms of head and neck cancer survivors.
Now finished with his part in the study but continuing to practice yoga, Bone said he’s much improved. “The yoga was amazing. I never felt as good in my life as I have after that two months of yoga therapy,” said Bone, who now does yoga exercises at home too. “My mouth opens wider, my neck is supple and my shoulder is “better.”
“It feels a lot better, and I know that because I’m not getting my headaches that I used to get,” he said.
Ridner has attacked lymphedema from multiple angles in several studies, working together with Jie Deng, PhD, assistant professor of Nursing, and Barbara Murphy, MD, professor of Medicine and director of Head and Neck Oncology at the Vanderbilt-Ingram Cancer Center.
Ridner has received more than $5 million in grants since 2001 to fund her efforts, including from the National Institutes of Health, the American Cancer Society and ImpediMed, a medical device manufacturer. She is the principal investigator on three active studies, and has worked on three other lymphedema studies, in addition to collaborating with other faculty in other research.
Her studies come from the premise that cancer survivors, particularly patients with lymphedema, aren’t given sufficient or timely treatments that could alleviate their symptoms. Her proposed treatments focus on early detection and treatment, with an emphasis on self-care to prevent trips to the clinic.
Ridner, Deng and Murphy make a good team. Ridner is a mentor to Deng, a noted Chinese-born nurse researcher who came to America and is focused on studying head and neck cancer patients, with internationally acclaimed results. And Murphy is the physician who has treated head and neck cancer patients at Vanderbilt for 22 years, providing patients and inspiration for the nurse researchers’ studies.
Ridner and Deng are recognized as pioneers in the field of lymphedema research, particularly in America. Their closest peers are in Germany, Scandinavia and Australia.
“It has been a fight for the last 20 years to try and change the paradigm” of symptom control for head and neck cancer patients, Murphy said. “We are finally getting to a point now where attention is being turned toward accumulated effects in a meaningful way.”
A NEW APPROACH: YOGA
For one of Ridner’s latest studies, Murphy suggested an unconventional approach: how yoga can help head and neck cancer patients. This yoga project was successfully funded by the National Institutes of Health in 2012. Bone, a patient of Murphy’s, is one of an expected 40 patients who will test the effectiveness of 16 yoga poses to loosen the body, alleviate swelling and pain and improve motion.
Bone and others are filmed and offered a DVD of their session, which they can use to practice yoga at home.
Participants come to Godchaux Hall three times a week for four weeks for 90-minute, one-on-one sessions with Sujatha Yarlagadda, a yoga therapist and assistant in Nursing at VUSN. Each session includes awareness practice, postures that focus on improving mobility in the neck, jaw and shoulders, breathing exercises, relaxation and meditation.
“The majority of the time patients identify themselves with the disease,” Yarlagadda said. “Yoga helps them detach themselves from that perspective and gives them the experience of who they are at a deeper level. Once a person goes there, the outlook is totally different.”
Ridner compared participants’ physical measurements taken after the four weeks of treatment to before. For the next four weeks, they came to yoga therapy two times a week, a similar regimen to traditional physical therapy.
Ridner is closely measuring the effectiveness of each yoga position, and combinations of positions. Her hope is that this is one step toward a more comprehensive study that will lead to targeted yoga therapies that patients can do at home.
More than half of the participants have completed their yoga therapy; the rest will be seen before the study is completed in July.
Though the study isn’t finished, Ridner is encouraged by the changes she is seeing in participants.
“They walk better,” she said. “They’re standing up straighter. They say hi when they see people and they have a smile on their face that they literally didn’t have when they first came in the door.”
PERSONAL EXPERIENCE SHAPES RESEARCH
Ridner’s passion comes from personal experience. A longtime nurse and hospital administrator with a history of working with cancer patients, she came to VUSN in the late 1990s to pursue her master’s degree in nursing.
Her mother had breast cancer at the time, and Ridner warned her that she was at risk for lymphedema. “But nobody else even mentioned to her that she was at risk,” she said.
Sure enough, as Ridner was working on a research project looking at the state of science of lymphedema management, her mother developed the condition.
“My mother was a pianist, and she had played the piano in church since she was 13 years old, and her hand got so big she couldn’t do it,” Ridner said. “That was her passion and she had to give it up.”
Ridner’s motivation only deepened when her project found there was little research in lymphedema management. The science that was available was from Australia, Germany or Scandinavia.
After attaining her master’s degree in 2000, Ridner began pursuing her doctorate. The focus for her dissertation was clear: lymphedema.
She sought, and received, a federal grant to study 149 breast cancer patients with and without lymphedema to see what differences they have in symptoms and overall quality of life. She found “that there really were quite stark differences in the number of and the type of symptoms they had and that their quality of life was poorer.”
Her research showed that about 28 percent of breast cancer patients develop lymphedema, significantly impacting physical, psychological and sexual functioning. Cancer survivors needed to be better informed of their risk for lymphedema and guidelines to reduce that risk.
“I decided that it really had to be a multipronged approach,” Ridner said, treating patients who already had the condition, but also finding preventive measures. She also realized that it wasn’t just breast cancer survivors who contracted lymphedema, so she expanded her research to other cancers.
The result was a four-year study that recruited 100 head and neck cancer patients and followed them for 18 months after treatment to catalog their problems. It considered the relationship between lymphedema and fibrosis, the excessive buildup of hardened scar tissue, seeking to better diagnose, reduce risk for and treat the conditions.
The study, recently closed, is in the data analysis phase.
“During the course of that study, we immediately knew within six months we had a much higher level of musculoskeletal impairments, postural changes and swelling than we had anticipated finding, because no one had ever done a study like we did,” Ridner said.
Ridner speaks with some frustration about the slow progress in lymphedema diagnosis, treatment and prevention.
“Ten years after my first study, breast cancer survivors with lymphedema continue to report the same problems of lack of education about the risk of lymphedema; no clue what the lymphatic system is, they don’t understand why the treatment is designed the way it’s supposed to be, they are distressed and have problems with work, with other people, and nobody addresses it,” she said. “Lymphedema is viewed as ‘it’s swelling and it’s nothing else,’ and we have lots of research done here now that proves that lymphedema is
a cluster of issues. It is swelling; it is altered feelings in your arm, which can range from anything from just feeling heavy, to downright pain, to being depressed or angry because you’re not getting the support from your providers that you need. So there’s a whole cluster of things.”
Treating the multiple, interconnected issues of breast cancer survivors with lymphedema is the focus of another study Ridner has underway, which is funded by the American Cancer Society. The Web-based study is testing the effectiveness of cognitive behavioral therapy, a 12-hour, video-intensive program that participants use at home.
The program starts with a video introducing them to the lymphatic system and how to treat lymphedema. It continues with material about healthy eating, movement, dealing with difficult people and coping with body image and sexuality changes.
“People can literally do this study from anywhere, if they want to be in it,” she said.
Meanwhile, Deng is working on a similar study that targets head and neck cancer patients.
DETECTING LYMPHEDEMA WITH A DEVICE
Self-care was the focus of another of Ridner’s recent studies, published in December 2014 in the journal Lymphatic Research and Biology. Ridner developed a protocol for breast cancer survivors with lymphedema to use a biomedical impedance device to measure the fluid volume in their limbs, similar to the way diabetics measure their insulin. Unlike insulin monitoring, however, the device is not invasive; it requires only having an electrode attached.
The idea behind the self-monitoring is to detect retained fluid early, when the condition is easier to treat. Traditionally, lymphedema patients have monitored their swelling volume with a simple tape measure, an inexact science. Swelling would have to become advanced before the tape measure could detect it.
Not so with the medical device. It offers exact, quantitative measurements of swelling. Ridner found that patients who used the device wore compression garments more often to control swelling. In other words, they had better control of their swelling and knew more exactly when to wear their garments, and when they weren’t necessary.
Several patients told Ridner how freeing it was to be able to discard the garments for special events, like a daughter’s wedding, “and have a good time instead of being anxious and guilty” about not wearing them, she said.
Now that Ridner has proven that the medical device is more effective than traditional methods of measuring fluid volume, she has another study underway to test a different device.
Ridner’s goal is to keep people from developing chronic lymphedema by allowing them to test themselves at home. The study is enrolling 1,100 research subjects over two years at five sites in the United States and Australia. They will be randomized to be measured by a tape measure or the device.
If the subjects meet a certain criteria for swelling, they will wear a compression garment for four weeks and will be tested again after eight weeks. If the swelling progresses to a certain point, they will be referred to medical doctors for treatment. If not, they will be tracked for three years in the study.
The device’s manufacturer, ImpediMed of Brisbane, Australia, approached Ridner with the idea and is funding the study. Compression garment manufacturer Medi USA is donating the garments.
“It’s a unique collaboration between a device manufacturer and an intervention garment company to do this study,” Ridner said.
COLLABORATION WITH DENG
When Ridner started her research into lymphedema, it was a lonely road. Now it is a bit less so, thanks to Deng, an assistant professor of Nursing and frequent collaborator who first met Ridner as a research assistant in 2007.
Deng was a successful nurse researcher in China before she left her home to pursue a PhD at the Vanderbilt University School of Nursing. Originally, she wanted to study oral health issues for people on ventilators, Deng said.
Working with Ridner, Deng quickly caught her infectious enthusiasm for lymphedema research. “She’s my mentor,” Deng said.
Deng’s doctoral thesis combined her interest in oral health with her new fascination with lymphedema.
Her research centered on swelling in the head and neck, and found that lymphedema also occurred internally, groundbreaking work that attracted international attention.
Deng found that 75 percent of the head and neck cancer patients she studied had lymphedema, internal or external. Most had both.
“Before that publication came out, people didn’t even know this was a problem,” Ridner said. “I can’t tell you how unique it is for student work to have such an impact as it did.”
Murphy said the next grant Deng is seeking is for another pioneering study: developing a standard for measuring lymphedema along the trajectory of recovery. There are no such standards now, she said.
“This was the effort of a team,” Murphy said—Deng, Ridner and herself. “One person could not do this.”
THE ROAD AHEAD
Murphy is optimistic about what the lymphedema research will bring in the coming years.
“What I would like to see is a body of literature that clearly defines lymphedema and fibrosis and its progression,” she said.
In that future world, lymphedema and fibrosis would be properly assessed. Patients would be referred to effective therapy, which would be defined and refined. They would be made available to a wide audience, which could incorporate into overall habits for healthy living.
The bottom line: having cancer patients merely survive is no longer sufficient. They must thrive.
“I think what changed over the last, say, 10 years is the recognition that it’s all well and good to cure people and that really should be our primary concern,” Murphy said, “but that you cannot look to extend life without ensuring… life that’s worth living.”
– Matt Batcheldor