Sheila Ridner, PhD, RN, ACNP
Sheila.Ridner@vanderbilt.edu

When you ask people to close their eyes and visualize a patient with cancer or survivor with lymphedema, most, nurses included, will see a breast cancer survivor wearing a compression garment on an arm. Breast cancer survivors with lymphedema typically have a highly visible condition because of the compression garments they wear or because one arm looks different than the other. Breast cancer survivors have told me that they feel their right to maintain privacy of their cancer history is often compromised because of the highly visible nature of lymphedema.

This is very upsetting to some people, as I personally witnessed several years ago when I was called to the waiting room of a gastrointestinal practice where I was completing a rotation in my nurse practitioner program. I was asked to help a woman who was crying uncontrollably in the lobby. I took her to an exam room and discovered that she was upset because a man had offered to hold the elevator door for her as she exited, commenting, "I see you have had breast cancer." It was a hot summer day in the South, and the woman had worn a short-sleeved dress with a compression garment on her arm. Obviously, the kindly gentleman was “too aware” of lymphedema associated with breast cancer in this woman's opinion.

On the other extreme, awareness about lymphedema occurring in other cancer survivors is lacking by both the lay public and healthcare professionals. Many patients with cancer are at risk for lymphedema. Patients with ovarian, cervical, uterine, head and neck, and prostate cancer; melanoma; and sarcoma may survive only to develop chronic lymphedema. In some cases, the lymphedema may be in the genitals and lower extremities, hidden beneath underwear and pants, giving the lay public no opportunity to notice the condition. Unfortunately, based on my work with patients with head and neck cancer, I also know that late-effect lymphedema that develops three to six months after concurrent chemoradiation is often either not diagnosed or diagnosed only when patients are having severe swelling and require hospitalization for breathing difficulties. Patients frequently arrive at cancer clinics thinking that their cancer has returned, or they may have seen other healthcare providers who did not recognize what was taking place.

At our last SIG meeting, we discussed ways to improve awareness of lymphedema as a problem that goes beyond breast cancer. We decided to submit this topic as an instructional session to be presented at the 2008 ONS Congress as well as feature non-breast cancer lymphedema in one of our newsletters. Unfortunately, the instructional session was not selected for presentation, but we will try again next year. In the meantime, this issue of the newsletter includes interesting information about lymphedema beyond breast cancer.

PhD Nursing Student Dedicated to Improving Lymphedema in Head and Neck Cancer Population

Jie Deng, BSN, MSN
Vanderbilt University
deng.jei@vanderbilt.edu

Because of lymph node dissection, radiation, and surgery, many patients with cancer develop lymphedema after treatment, including those with breast, ovarian, and head and neck cancers. Head and neck cancer survivors may have a higher prevalence of secondary lymphedema from surgery and radiation therapy than other patients with cancer. I started a research practicum in a cancer clinic and rehabilitation center because I want to work closely with patients, especially patients with cancer. The incurable reality of lymphedema makes me have a strong interest in lymphedema research to help patients decrease their symptoms and improve their quality of life.

Two patients in particular left a great impression on me. One had completed her surgery and radiation therapy approximately one month earlier. Each time she came to clinic, she wore a scarf around her neck. She told me that she did not like people seeing her wound and neck swelling. She had severe swelling on both sides of her neck, including the submental area. At her second visit to the clinic, her neck was much more swollen. She had not followed recommendations for manual massage, and told us that she had so many other distressing symptoms (such as pain, trouble swallowing, and dizziness) that she had neither the time nor energy for massage. She had so many symptoms torturing her that it was difficult for her to take care of her neck swelling, even though she was experiencing tightness, heaviness, and compromised cervical range of motion.

Another patient had a fibrosis on his neck. When I examined his skin, the tissue was totally hard and felt like wood. He told me that the fibrosis was more of an aesthetic problem but admitted that it sometimes resulted in extreme discomfort because he felt tightness in the hard tissue, which affected his neck range of motion. Missing early treatment for lymphedema contributes to late fibrosis in patients with head and neck cancer. Once fibrosis develops, treating lymphedema is much more difficult and neck function may be affected.

Enhance Your Understanding of Lower Quadrant Lymphedema

Ting-Ting Kuo, PT, MS
Clinical Specialist, Lymphedema
New York University/Rusk Institute of Rehabilitation Medicine
ting-ting.kuo@nyumc.org

Patients undergoing any type of lymph node dissection or radiation therapy are at risk for developing what is becoming an increasingly recognized and acknowledged potential side effect: lymphedema. Lymphedema is localized retention of protein-rich fluid that can result in chronic swelling and lead to episodes of cellulitis and infections.

In the past, the focus of lymphedema and its associated management has been on the breast cancer population. The following discussion highlights key points in other cancer populations, specifically patients with gynecologic cancers and melanoma, who are at risk for developing this highly intrusive but manageable condition.

The majority of literature and research focuses on management of lymphedema of the upper extremities, most often because of sentinel and axillary lymph node dissections and radiation therapy. Scant attention is given to lymphedema of the abdomen, pelvis, and lower extremities. Inguinal groin dissections, pelvic and abdominal nodal dissections, and radiation therapy can create a sequela of events that leads to the disruption of the lymphatic system, resulting in lymphedema of the lower quadrant(s).

The human lymphatic system is comprised of a superficial and deep system. Right below skin level, a vast network of vessels makes up the superficial lymphatic system, which eventually connects to the deep lymphatic system, creating an incredibly complex and sophisticated thoroughfare of structures that fight disease and maintain fluid balance. In the lower quadrants, the right and left inguinal lymph nodes filter lymph from each respective lower extremity. From there, lymph is transported into the right and left lumbar trunks, eventually emptying into the thoracic duct at lumbar level L2 via the cisterna chyli and the intestinal trunk, which drains the small intestines. The thoracic duct then continues to extend in a cephalad direction until it reaches the left venous angle, where it concludes. Oftentimes melanoma of the lower extremities will require an ipsilateral inguinal groin dissection, whereas gynecologic cancers may require pelvic and abdominal node dissections. Because of the location of nodes in close vicinity and in relation to the functioning of the superficial and deep lymphatic systems, it is easy to comprehend how and why lymphedema can occur. Healthcare providers should be able to assist in planning treatment strategies should lymphedema develop.

Similar to lymphedema of the upper extremities, common symptoms reported with lower quadrant lymphedema may include

• Pressure
• Tightness
• Heaviness
• Sensory changes
• Edema
• Increased size of the affected area
• Limitations in range of motion
• Weakness
• Impaired balance
• Scarring and fascial restrictions
• Tissue firmness and fibrosis
• Poor posture
• Discomfort and pain
• Fatigue
• Limited endurance
• Cellulitis.

These impairments often translate into functional limitations and disabilities, including

• Difficulty with basic grooming, bathing, and hygiene
• Difficulty in finding clothing and shoes that fit
• Difficulty in performing household chores and responsibilities
• Limited tolerance to prolonged standing and walking
• Difficulty in returning to exercise and physical activities
• Limitations participating in social and leisure activities
• Limitations in returning to work.

What can be done to decrease the risk of developing lymphedema and minimize effects once it develops? It all starts and ends with education. Education of what lymphedema is, how it can develop, what measures healthcare professionals and patients can take as precautions, what signs and symptoms to anticipate and recognize, and knowing where and what treatment can be obtained should lymphedema develop are all key elements.

Doctors, nurses, nursing aides, physical and occupational therapists, and all others involved in direct and indirect patient care should be able to demonstrate knowledge of the lymphedema precautions that follow. In addition, patients should be educated on how to decrease their risk of developing lymphedema prior to or immediately following lymph node removal by understanding these precautions.

• Recognize the signs of infection (e.g., redness, pain, increased temperature, swelling).
• Avoid punctures, cuts, and bruising.
• Understand the importance of skin care and hygiene, particularly of the feet.
• Push, don't cut, cuticles during a pedicure.
• Wear closed-toe, supportive shoes.
• Minimize insect bites by using insect repellant or wearing long pants.
• Minimize exposure to extreme temperatures.
• Participate in a slow, progressive return to exercise and activities, and take frequent rest breaks.
• Minimize tight clothing, including belts, shoes, and socks.
• Maintain a healthy weight.
• Obtain a properly fitted prophylactic compression garment prior to air travel.

If symptoms of lymphedema develop, patients should be instructed to rest and elevate the extremity to decrease any strain placed on the affected area because of overexertion and gravitational force. Early stages of lymphedema have demonstrated potential reversibility with early intervention. Patients should be referred immediately to an experienced physical therapist who has been trained in providing manual lymphatic drainage (MLD), multilayer bandaging (MLB), exercise, obtaining a properly fitted compression garment, and lymphedema management education to develop an individualized plan of care geared specifically to the patient. Scar management, myofascial techniques, neuromuscular re-education, gait training, and a progressive home exercise program also may be incorporated to return patients to their optimal functional status.

Lower quadrant lymphedema often presents a greater challenge in treatment compared to its upper extremity counterparts. An individual's premorbid status, current comorbidities, age, and physical status, including flexibility and weight, play an important role in the treatment of lower quadrant lymphedema. As one ages, a concomitant venous component often develops because of refluxing valves, causing further potential compromise of overall functioning of the circulatory system. In addition, nurses must understand that the presentation and location of swelling often are variable. A common misperception is that lymphedema-associated swelling must involve the entire leg, but this is often not the case. Many individuals present with swelling solely in the foot and ankle, upper thigh, hip and buttock, genitalia, or abdomen. In addition, with abdominal, pelvic, and female genital edema, treatment may require more creative strategies, such as the use of corsets, girdles, or pads, because of the inability to apply traditional MLB. Physical therapists must have a strong foundation and a firm understanding of the anatomical lymphatic pathways and watersheds. Care should be taken to avoid exacerbating symptoms to involve other currently non-affected areas, such as the opposite lower extremity in cases of pelvic and abdominal nodal dissection because it may be predisposed to developing lymphedema as well. Patient compliance, support, and willingness to fully participate in treatment are integral to the success of lower quadrant lymphedema treatment.

Patient With Lymphedema Shares Her Perspective

Cindy Matthes-Loy, MSW
cindymatthesloy@earthlink.net

My life has been rich with experiences, travel, wonderful people, and excellent health. I was a multi-tasker before the word was invented. As a clinical social worker in private practice, a nonprofit organizational trainer, a marathon runner, and a student working on a PhD in psychology, movement is how I express myself. When I was diagnosed with a melanoma six years ago, it stopped me in my tracks.

How could this be? I had been drafted into a new reality, from wellness to illness. I was bewildered by too many doctors, too many treatments, and too many experts with differing opinions. The mere word cancer gave me sweaty palms and a racing heart. The medical recommendations were to act quickly, so I was swept through a surgery that excised the melanoma as well as five lymph nodes in my groin.

Fortunately, the melanoma had not metastasized. My family and I breathed a sigh of relief and were ready to get on with life. I was soon back to my running schedule and planning to fly to several different cities for business when I first read about lymphedema in a brochure at the doctor’s office. I already had a disquieting concern: a growing lump where one of my lymph nodes had been removed, evidence that my lymphatic fluid needed new instructions about where to go and what to do. The lump was a little larger than a golf ball and painful when I ran.

I contacted Ellen Poage, MPH, ARNP, CLT-LANA, through a referral from my oncologist, and she advised me how to fly safely after a surgery affecting the lymphatic system and set me up for a lymphatic massage. When I went for my appointment, Ellen explained the lymphatic system and what it does as she performed manual lymphatic drainage. She showed me how to do it myself so I could continue to stimulate the movement of the fluid to reduce swelling and get my system moving again. I followed her directions faithfully, with the hope of getting my body back to normal and my running up to speed.

ONS Holds Multisite Research Core Data Set/Outcomes Consensus Conference

ONS has been exploring the role it can play in outcomes measurement and multisite research as part of the Outcomes and Multisite Research Strategic Plans. The Nursing-Sensitive Patient Outcomes White Paper (Given & Sherwood, 2005), published in the Oncology Nursing Forum as a result of the 2003 Outcomes Project Team, provided important background for the examination and evaluation of oncology patient outcomes impacted by nursing interventions. Simultaneously, the interest of ONS research members in identifying ONS's role in facilitating the use of the same research plan across several sites and pooling data for interpretation and dissemination has led to the development of several initiatives. The outcomes and multisite research initiatives came together at the recent Multisite Research Core Data Set/Outcomes Consensus Conference held August 4–5, 2007.

Several experts were invited to join the Core Data Set Project Team to share and present their expertise in defining outcomes, developing quality indicators, and collecting and storing large data sets. The presenters included Jacqueline Dunbar-Jacob, PhD, RN, FAAN, from the National Institutes of Health's Patient-Reported Outcomes Measurement Information System (PROMIS) Initiative and the University of Pittsburgh Center for Research in Chronic Disorders; Kristen McNiff, MPH, from the American Society of Clinical Oncology Quality Oncology Practice Initiative; Lori Hoffman-Hogg, RN, MS, AOCN^®, from the Veterans Affairs Nursing Outcomes Database; and Dianne M. Reeves, RN, MSN, from the National Cancer Institute’s Cancer Biomedical Informatics Grid. Other invited members included Susie Beck, PhD, ARPN, AOCN^®, Deborah Eldredge, PhD, RN, Barb Holmes-Gobel, MS, RN, AOCN^®, and Lori A. Williams, RN, DSN, OCN^®, AOCN^®.

The focus of the consensus conference was to identify a set of core data elements that are meaningful to oncology nurses, patients, and stakeholders and to devise a strategy for collection and use in clinical practice, research, and administration. The group came together to brainstorm and reach consensus on nursing-sensitive measures (core data elements, core data set, and outcomes) and generate ideas for strategies to facilitate implementation in various clinical and research settings. Discussion focused on considerations important in planning and implementing an oncology nursing outcomes measurement program, including the role that ONS can contribute as a professional society.

ONS Putting Evidence Into Practice (PEP^®) resources were considered as the basis for the selection of core data elements. A review of proposed core data elements, their related measures, and criteria for selection, prepared by Christopher Friese, PhD, RN, AOCN^®, and Dorothy Dulko, PhD, RN, MS, NP, identified core data elements to be considered for use, including fatigue, pain, oral assessment, performance status, emotional distress, neurotoxicity, neutropenia, sleep, nausea and vomiting, constipation, and demographic characteristics. The consensus conference participants felt that ONS core data elements for common data collection should aim to provide consistency in nursing core measures across local, regional, and national settings.

The consensus conference yielded many activities that are consistent with several national and international initiatives related to quality cancer care and quality nursing care. The work of the 2007 Core Data Set/Outcomes Consensus Conference Project Team is just beginning, as this will be a long-term initiative with several intermediate steps, ultimately leading to data that will demonstrate the impact of oncology nursing interventions on quality cancer care. ONS has the potential to be in a unique leadership role in this complex and important quality cancer care initiative.

Reference

Given, B.A., & Sherwood, P.R. (2005). Nursing sensitive patient outcomes—A white paper. Oncology Nursing Forum, 32, 773-784.

Editor's Message
Welcome, New Members!

Ellen Poage, MPH, ARNP, CLT-LANA
Fort Myers, FL
egpoage@mac.com

Please join me in welcoming the newest members of the Lymphedema Mangement SIG.

• Summer Burke, Avon, IN
• Colette Horgan, Bedford, NH
• Georgia Kapczynski, Waco, TX
• Evelyn Roughton, Savoy, IL

We always are looking for articles and assistance, so please know that you can actively participate in the SIG. In addition, you are welcome to attend our SIG meeting at the annual ONS Congress to get to know us. We look forward to meeting you in person!

This is a wonderful issue of the newsletter, thanks to our coordinators for getting such expert opinions. I am so pleased when we receive an article from a patient, and Cindy Matthes-Loy, MSW, has done an excellent job describing her experience. She is also a counselor and works well with cancer survivors.

News From ONS National

Get Online-Only Special Pricing on New Pharmacology CD
Pharmacology Update (Volume 1) is the first of a new series of in-depth, self-paced CD-ROMs designed to present detailed information on pharmacotherapy in cancer care. Order your copy now to take advantage of special online-only pricing! For more information, click here.

Oncology Nurse Practitioner Competencies Available
The 2007 Oncology Nurse Practitioner Competencies outlines specialty entry-level competencies for oncology nurse practitioners (ONPs) who care for adult and late adolescent patients throughout the continuum of cancer care. It should be used by nurse practitioners, educators, employers, physicians, nurses, and anyone else who seeks to understand the role of the ONP.

This important guide was developed by a multi-organizational national panel convened by ONS that used a nationally vetted process to develop, review, and revise the document. The competencies then were reviewed and critiqued by 127 ONPs as well as 20 members of a national validation panel comprised of representatives of nursing organizations and National Cancer Institute-designated comprehensive cancer centers. To learn more, click here.

Take Advantage of ONS Partner Products and Services
Your ONS membership entitles you to a suite of additional member benefits from companies such as Verizon, Amica, Bank of America, and Dell. For more information, click here.

CJON Seeks Reviewers
Put your knowledge and expertise to work by becoming a reviewer for the Clinical Journal of Oncology Nursing. For more information, click here.

Employment Opportunity
ONS Seeks Education Project Manager

The Oncology Nursing Society (ONS) is hiring a candidate who possesses the following to fill the role of Education project manager. The ideal candidate will be

• A self-starter to drive daily implementation of educational projects
• An individual who can motivate volunteers and staff to collaborate and produce dynamic, innovative educational programs
• An individual who is able to mentor speakers, develop key opinion leaders, and facilitate group work
• An individual who demonstrates expertise in educational design.

ONS Education project managers

• Participate in generative processes to design programs and strategies that will meet oncology nursing education needs.
• Develop project timelines and recruit planning team members.
• Employ principles of project management to plan and execute programs from conception through delivery and outcome measurement, ensuring completion according to the plan, within budget and on time.
• Generate all necessary reports and correspondence documenting program progress and outcomes and lead all status update meetings and reports about projects.

This position requires a strong degree of accountability for overall success in developing and delivering scientifically rigorous educational programming for the oncology nursing audience.

Submit resume and salary history to hrdept@ons.org.

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A great way to stay connected to your SIG is to join its Virtual Community. It’s easy to do so. All you will need to do is

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• If you already have log-in credentials generated from the ONS Web site, use this information instead of attempting to generate new information.
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Participate in Your SIG’s Virtual Community Discussion Forum

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Lymphedema Management SIG Officers

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ONS Membership/Leadership Team Contact Information

Angie Stengel, MS, CAE, Director of Membership/Leadership
astengel@ons.org
412-859-6244

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dscheuring@ons.org
412-859-6256

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412-859-6230

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