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| Volume
16, Issue 1, April 2005 |
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| Coordinator’s Message Newsletter Focuses on Melanoma and Associated Lymphedma Marjorie
Whitman, RN, MSN, AOCN®Columbia, MO whitmandale@mchsi.com Greetings to all continuing and new SIG members! This year marks the 30th anniversary of ONS and the 16th year of the Lymphedema Management SIG. Awareness of lymphedema on the part of healthcare professionals is increasing. Patients have benefited greatly from improved information about prevention and treatment and affiliation with support groups and the National Lymphedema Network (NLN). Given the prevalence of breast cancer and the ongoing risk for lymphedema, breast cancer-associated lymphedema is increasingly the focus of research and treatment. This issue of the newsletter will focus on lymphedema associated with melanoma. Melanoma is a malignancy of melanocytes commonly found in the basal layers of the epidermis and in the eye. These migrating cells also are found in the meninges, alimentary and respiratory tracts, and lymph nodes. Melanoma spreads through layers of skin and through lymph channels from the primary tumor; surgical diagnosis and treatment involve wide local excision (WLE) and regional lymph node biopsy. Even with the minimally invasive surgical procedure of sentinel lymph node biopsy, the resulting lymphatic disruption combined with WLE creates a risk for lymphedema. Therefore, I am grateful to reprint an article featured in LymphLink titled “Lymphedema in Patients With Melanoma.” The authors reviewed and critiqued research on the incidence of melanoma-associated lymphedema. |
The Lymphedema Management SIG Newsletter is produced by members of the Lymphedema Management SIG and ONS staff and is not a peer-reviewed publication. |
| Special Interest Group Newsletter April 2005 |
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Coordinator’s
Message Greetings to all continuing and new SIG members! This year marks the 30th anniversary of ONS and the 16th year of the Lymphedema Management SIG. Awareness of lymphedema on the part of healthcare professionals is increasing. Patients have benefited greatly from improved information about prevention and treatment and affiliation with support groups and the National Lymphedema Network (NLN). Given the prevalence of breast cancer and the ongoing risk for lymphedema, breast cancer-associated lymphedema is increasingly the focus of research and treatment. This issue of the newsletter will focus on lymphedema associated with melanoma. Melanoma is a malignancy of melanocytes commonly found in the basal layers of the epidermis and in the eye. These migrating cells also are found in the meninges, alimentary and respiratory tracts, and lymph nodes. Melanoma spreads through layers of skin and through lymph channels from the primary tumor; surgical diagnosis and treatment involve wide local excision (WLE) and regional lymph node biopsy. Even with the minimally invasive surgical procedure of sentinel lymph node biopsy, the resulting lymphatic disruption combined with WLE creates a risk for lymphedema. Therefore, I am grateful to reprint an article featured in LymphLink titled “Lymphedema in Patients With Melanoma.” The authors reviewed and critiqued research on the incidence of melanoma-associated lymphedema. Also in this issue, Lila Courtney, ARNP-C, AOCN®, an oncology nurse and member of the Lymphedema SIG, offers a personal essay about her experience with melanoma and lymphedema. We appreciate her willingness to share her expertise and experience. Attention to this issue will raise nurses’ awareness and guide future interactions with patients treated for melanoma. To join the NLN and receive the quarterly newsletter, call 510-208-3200, visit www.lymphnet.org, or e-mail nln@lymphnet.org. I hope to see you at the ONS 30th Annual Congress in Orlando, FL. We will meet as a SIG on Thursday, April 28, at 5:15 pm. We are delighted to welcome Sheila H. Ridner, PhD, RN, ACNP, as the new coordinator of the Lymphedema Management SIG at that meeting. The SIG is looking for people to nominate for coordinator-elect next year, so please share any good candidates.
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Lymphedema in Patients With Melanoma Latunya Davidson Wendy J. Evans Jane M. Armer Note. This article originally appeared in volume 17, Issue 1, 2005, of LymphLink. Reprinted with permission. Melanoma is a growing public health problem with an estimated 132,000 cases diagnosed annually worldwide (World Health Organization, 2004). It is the sixth most common malignancy among Americans (American Cancer Society, 2004) and accounts for more than 79% of all skin cancer-related deaths (Geller & Annas, 2003; Trask et al., 2001). Fortunately, the majority of patients diagnosed with melanoma present with early-stage disease that is cured by surgical excision alone. For others, presenting with regional or distant metastatic disease, the prognosis is not as favorable. The most critical factors for determining the prognosis of patients with melanoma are primary tumor thickness and the status of regional lymph nodes. Both of these elements are incorporated into the American Joint Committee on Cancer staging system for melanoma (American Joint Committee on Cancer, 2002). Surgical Treatment Current guidelines outlined by the National Comprehensive Cancer Network for the treatment of patients with melanoma recommend SLN biopsy for all patients with primary melanomas greater than 1 mm thickness and subsets of patients with high-risk thin (< 1 mm) melanomas (Ak, Stokkel, Bergman, & Pauwels, 2000). In patients with an SLN that tests negative for presence of cancer, no further surgical therapy is recommended. In patients with metastases identified in the SLN, a complete lymph node dissection is performed. This combination of surgical treatments, a WLE of a primary tumor along with SLN biopsy and possible subsequent complete lymph node dissection, results in multiple sites of lymphatic disruption. Unlike axillary (“armpit”) node dissection for patients with breast cancer, which includes dissection of level I and II lymph nodes, axillary node dissection for patients with melanoma of the upper extremity or trunk includes the routine dissection of level I, II, and III lymph nodes. Level III lymph nodes are the highest axillary nodes (apical). A standard lymph node dissection for patients with lower extremity or truncal melanomas draining to the inguinal region includes the removal of lymph nodes located in the inguinofemoral (groin) region. In addition, subsets of patients with melanoma with bulky nodal disease undergo an additional deep pelvic dissection. The surgical treatment of melanoma results in varying degrees of lymphatic disruption resulting in a lifetime risk for developing lymphedema. It is postulated that lymphedema may occur more frequently in patients with melanoma because of: (1) multiple surgical sites (e.g., primary tumor excision on an extremity in conjunction with lymph node biopsy or dissection), (2) extent of nodal dissections, and (3) anatomic sites, particularly the lower extremity, which may be at increased risk due to physiologic reasons. Review of the Literature Measurement Methods Lymphedema Classification Surgical Procedures Postoperative wound complications often are associated with extensive nodal dissections, particularly in the inguinal region. Seven studies reported postoperative wound complications, including cellulitis in 6%–33% of patients (Baas et al., 1992; Ingvar, Erichsen, & Jonsson, 1984; Karakousis & Driscoll, 1994; Lawton et al., 2002; Serpell, Carne, & Bailey, 2003; Strobbe, Jonk, Hart, Nieweg, & Kroon, 1999; Urist et al., 1983). Anatomic Variation—Upper Versus Lower Extremity Time Horizon Discussion Lymphedema is a significant problem. In addition to the symptoms and risks, the associated challenges also may lead to post-treatment psychosocial distress. Although researchers have documented the psychological sequelae of breast cancer treatment (Tobin, Lacey, Meyer, & Mortimer, 1993), we know little about such issues in patients with melanoma, especially those that may involve lymphedema of the lower extremity. A conclusion by Maunsell, Brisson, and Deschenes (1993) still stands: “The impact of lymphedema problems on patient quality of life has not been quantitatively assessed.” This research has been hampered by the traditional view that quality of life is less important than the eradication of cancer and detection of recurrence. Unfortunately, lack of attention to lymphedema by health professionals has not only meant that many people go undiagnosed and fail to receive basic preventive information (Maunsell et al.), but this lack of attention also has hindered the development of effective psychosocial and physiological therapeutic interventions. Early detection and intervention hold the greatest promise of reducing this widespread condition (Petrek, Pressman, & Smith, 2000; Rockson, 1998). The range of findings in the literature reflects inconsistent criteria for defining lymphedema, small studies, retrospective analyses, and short follow-up.
We must clearly identify epidemiological and clinical factors associated with risk and incidence to build a foundation for preventive interventions.
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19, 2–11. Holmes, E.C., Moseley, H.S., Morton, D.L., Clark, W.,
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management of melanoma. Annals of Surgery, 186, 481–490. Ingvar, C., Erichsen, C., & Jonsson, P.E.. (1984). Morbidity
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(Ed.), Lymph stasis: Pathophysiology, diagnosis and treatment
(pp. 444–451). Boston: CRC Press. Petrek, J.A., & Heelan, M.C. (1998). Incidence of breast
carcinoma-related lymphedema. Cancer, 83(12, Suppl. American),
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Lymphedema: Current issues in research and management. CA: A Cancer
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N., Glass, F., et al. (1994). The orderly progression of melanoma nodal
metastases. Annals of Surgery, 220, 759–767. Rockson, S.G. (1998). Precipitating factors in lymphedema:
Myths and realities. Cancer, 83(12, Suppl. American), 2814–2816. Serpell, J.W., Carne, P.W., & Bailey, M. (2003). Radical
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McCarthy, W.H., & Quinn, M.J. (2000). Locally advanced melanoma: Results
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(1993). The psychological morbidity of breast cancer-related arm swelling.
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Nurse Uses Her Personal Battle With Lymphedema to Help Educate Patients Lila
Courtney, ARNP-C, AOCN®courtnel@mercyhealth.com I have a personal as well as professional interest in lymphedema. I was diagnosed in 1972 with malignant melanoma on my left forearm. The standard care at that time was a wide excision with lymph node dissection. Nothing was mentioned to me at that time regarding the possibility of lymphedema down the road or at all. I was not given any instructions regarding what I should or should not do to prevent lymphedema. Ten years later, I developed lymphedema and went back to my surgeon. He sent me for physical therapy, and they bandaged me with an ace bandage, and I was fitted with a compression sleeve. No education was done at that time either. To be fair, that was more than 20 years ago, and hopefully that would be different now. Unfortunately, I learned to care for my lymphedema on my own, by trial and error. My compression sleeve did not work well because my hand would turn blue and get numb because of the double compression at my wrist where the sleeve and gauntlet met. No one knew how to prevent that, so I went without the compression sleeve. You can’t work as a nurse with a blue and numb left hand. Needless to say, I continued like that and suffered two bouts of cellulitis, which luckily resolved with oral antibiotics. Of course, with each infection, the lymphedema became worse. One of the physical therapists in my hospital has primary lymphedema, and we were talking one day at work regarding lymphedema, and she told me she was taking classes on how to assess and treat lymphedema and had proposed a lymphedema clinic at our hospital. Long story made short, we now have a lymphedema clinic available at our hospital, and I was her first official patient. Our clinic provides manual lymph drainage (MLD) and bandaging. I have used MLD and bandaging and now use a Reid sleeve. The sleeve is very efficient to use. It greatly reduces the time it takes me at the end of the day to put on the Reid sleeve instead of bandaging. In addition, the breast center nurse has an educational component regarding lymphedema in her postoperative instructions. The physical therapy department has a two-hour education program designed to prevent lymphedema in our patients with breast cancer. We try to encourage all of our patients with breast cancer to attend. When I perform follow-up examinations on my patients with breast cancer, I assess for lymphedema and take the opportunity to remind them how to prevent lymphedema, recognize it if they get it, and where to get assistance. They seem to respond positively to me because they know that I live with lymphedema every day and know what I am talking about. We have come a long way in the 33 years since my original surgery with the advent of sentinel node biopsy, and my hope is that everyone who has the potential for developing lymphedema will receive the necessary information to prevent it before it starts.
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Editor’s
Message Ellen
Poage, RN, BSN, MPH, LMT, CLTFort Myers, FL egpoage@mac.com In the last newsletter, I named specific attendees at the 2004 National Lymphedema Network (NLN) conference who regularly contribute to the Lymphedema SIG Newsletter. But I failed to mention Saskia Thiadens, RN, conference director and founder of the NLN and the ONS Lymphedema Management SIG. I wondered, when this was brought to my attention, why this happened. I realize that Saskia is not just an attendee. Saskia is the NLN and the voice of patients with lymphedema. The Lymphedema Management SIG is in its 16th year. This is a summary of an interview I had with Saskia on February 25, 2005. Since 1987, in some form or another, Saskia has been working tirelessly for patient care for lymphedema. Her curriculum vitae is impressive; she was born in Holland, attended university in nursing and midwifery, and then came to the United States, where she started a career in nursing, mostly emergency room nursing. Although she arrived in New York, she moved to San Francisco, CA, in the early 1970s. By 1982, Saskia owned and operated Aurora Manor, a recovery center for patients who had undergone cosmetic and reconstructive surgery. The first time she encountered lymphedema, the patient had a memorable case. It was a massive arm, and this triggered her initial interest in lymphedema. She immediately sensed that something was wrong that this arm could be so neglected. She spoke with a physician from the University of California, wanting to know whether this condition "had a name." She began treating such cases in any way she could. Although from Holland, she was not aware of the strides Europeans were making in this field. She just did what she could with bandaging, skin care, and, later, pumps. In early 1987, she closed the postoperative clinic and opened Aurora Medical Lymphedema Clinic. She still did not realize the enormity of the problem, but it fascinated her. She also created her nonprofit organization, the NLN, in 1988. Robert Lerner, MD, was one of her original collaborators; as a vascular physician, he was dealing with the same problems. In 1989, Saskia was in contact with Marlys Witte, MD, who told her about the International Society of Lymphology conference to be held in Tokyo, Japan. She went and was the first clinical nurse to participate. The others were researchers. They didn’t know what to do with her. But she accomplished the most important point, she met all of the lymphology leaders, all of whom would continue to be mentors and friends and supporters of her and her conferences in years to come. The interesting thing about Saskia is that she always keeps the focus on patient care. One of her proudest accomplishments was at the 1993 International Society of Lymphology (ISL) conference in Washington, DC. Saskia said she would attend, but only if she could bring 40 patients. The researchers were not interested; after all, ISL is a medical professional conference, not a patient conference. They finally allowed her to come, and this was the start of the patient clinic, with Saskia as the moderator. The medical panel was made up of major researchers who solved very compelling lymphedema problems. Saskia brought only very complex cases. The evening was so successful that it was repeated the next evening. Since then, Saskia always has included patients at NLN conferences, and, to this day, even ISL has patient clinic events. Saskia is by nature a problem solver. She knew that the problem with lymphedema was lack of awareness. So she single-handedly introduced people to lymphedema. She has published more than 25 times and has made more than 50 presentations. The NLN currently has more than 6,000 members, and its newsletter, LymphLink, is on volume 17. More than 200 treatment centers are listed. The NLN had its first conference in 1994 in San Francisco, and the 10th biennial conference was in Reno, NV, in 2004. Early on, Saskia realized that oncology nurses need to be involved in lymphology, so she started presenting to ONS with questions such as, “What are you doing for lymphedema?” In 1993, ONS was starting focus groups for all aspects of cancer. Saskia was there to represent lymphedema. Eventually, the focus group progressed into a SIG, the Lymphedema Management SIG, because of Saskia’s persistence and hard work. She completes what she sets out to accomplish. Asked what should be the present focus of the SIG, Saskia responded that the SIG should declare a position on lymphedema for ONS. In addition, ONS should offer preconference instructional sessions before each annual conference, she said. After educating patients, educating healthcare workers is the focus of the NLN. Saskia said that nurses play a pivotal role in patients with lymphedema; nurses should educate patients before and after surgery, educate patients about lymphedema do’s and don’ts, and assess patients for lymphedema by identifying signs and symptoms and referring. Recently, Saskia experienced “being a patient.” She underwent gynecologic surgery followed by chemotherapy and radiation, completed in January 2005. After the initial shock, she just proceeded forward. She said she is “absolutely not afraid.” This is how she approaches all things. She describes herself as a caretaker. She is determined to find a solution; she “needs answers.” She makes a decision and resolutely takes action. She also describes herself as “a pusher of new things.” We are all better because of this determined character.
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News From ONS
2005 Oncology Nursing Day and Month Kits Are Here! Updated Radiation Manual Is Available Get the Latest in Priority Symptom Management (PRISM) Information Coming Soon! New Package Provides Discount on Standards of Practice Are You New to Oncology? Check Out the Redesigned Evidence-Based Practice Resource Area Editor’s Choice
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| Special Interest Group Newsletter April 2005 |
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Lymphedema Management SIG Officers
Know someone who would like to receive a print copy of this newsletter? To view past newsletters, click here. ONS Membership/Leadership Team Contact Information Angie Stengel, Director of Membership/Leadership Diane Scheuring, Manager of Member Services Carol DeMarco, Membership/Leadership Administrative Assistant The Oncology Nursing Society (ONS) does not assume responsibility for the opinions expressed and information provided by authors or by Special Interest Groups (SIGs). Acceptance of advertising or corporate support does not indicate or imply endorsement of the company or its products by ONS or the SIG. Web sites listed in the SIG newsletters are provided for information only. Hosts are responsible for their own content and availability. Oncology Nursing Society
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