Article previously published in the Cutaneous Lymphoma Foundation's Forum Fall 2012 newsletter.
Nurses play a critical role in patient care and treatment, especially in cutaneous lymphoma where patients may see nurses more often throughout their course of treatment. The CLF had the chance to catch up with two very dedicated clinicians and talk with them about their work in the world of cutaneous lymphoma.
Marianne C. Tawa RN, MSN, ANP
Marianne Tawa has cared for patients with cutaneous lymphomas for more than 12 years. She is an enthusiastic member of a multi-disciplinary care team at Dana Farber Cancer Center in Boston, focusing on the management of cutaneous lymphoma. As a Nurse Practitioner, Ms. Tawa is well positioned to work with a team that includes dermatologists, oncologists, radiation oncologists and other professionals.
She is a “collaborator,” but also has responsibilities independent from the team. As an advanced practice clinician, she is educated and licensed to conduct independent patient visits, with attention to patient assessment, symptom management, medication prescribing, and supportive care. The stage of a patient’s disease typically dictates whether the Nurse Practitioner will collaborate with a dermatologist or medical oncologist.
In addition to clinical and technical expertise, the nursing role allows for management of critical patient communication and provision of psychosocial support. Ms. Tawa assists patients with (as she terms it) the “settling in” phase that accompanies a new cancer diagnosis. She provides them with strategies to reduce unnecessary fear and anxiety.
Tawa emphasizes, “education is paramount when it comes to clarifying cutaneous lymphoma terminology, interpreting clinical data, and outlining therapeutic plans.” Armed with a reasonable understanding of their diagnosis, patients are better able to communicate their concerns with their doctors and other healthcare providers.
Tawa’s role evolves as patients learn to live with the manifestations of the disease and the imposition of therapies. Patients and caregivers are counseled to observe responses and side effects and to gain confidence with the long-term chronic nature of this disease. Consequently, she spends a lot of time helping patients manage nuisances, such as pain, itch and dry skin. In a majority of cases, the highly visible nature of cutaneous lymphoma on the skin, sets the stage for early dialogue about a “lymphoma diagnosis” and its implications as the patient moves about their world.
Nurses have the opportunity to communicate more often with patients and can assist them to navigate the myriad of services offered, including phototherapy, extracorporeal photopheresis, radiation therapy, infusion centers, transplant service, pastoral, nutrition, complimentary therapy, palliative, and hospice care.
Today there are a host of therapies available to cutaneous lymphoma patients that require unique skills to administer. From topical steroids to radiation, from extracorporeal photopheresis to systemic chemotherapies, the Nurse Practitioner should be proficient and knowledgeable about all these therapies. And in the last few years new therapies have been approved and more therapies are on the horizon. There is a hopeful future for cutaneous lymphoma treatments. The R&D pipeline contains a number of promising treatments and technologies.
As a Nurse Practitioner specializing in cutaneous lymphoma, Ms. Tawa is grateful to the Cutaneous Lymphoma Foundation, which is growing in its global leadership around advocacy education and support of cutaneous lymphoma patients and their caregivers.
Marianne Tawa is a Nurse Practitioner with the Dermatology and Cutaneous Oncology Department at
Dana Farber Cancer Institute, Boston, Massachusetts.
Danica Uzelac RN, BSN
Although she has been with Rush for over twenty years, Ms. Uzelac’s work in cutaneous lymphoma is relatively recent. Back in 2002 she jumped at an opportunity to learn photopheresis – a therapy that offered hope without the side effects of traditional chemotherapy. In time she moved into the Dermatology Department and the rest, as they say, is history.
The cutaneous lymphoma clinic at Rush University Medical Center works as a team with a variety of medical, surgical, oncology, pathology, and radiation oncology specialties. Ms. Uzelac feels privileged to work under the leadership of Michael Tharp, MD, Professor of Dermatology and Warren Piette, MD, Professor of Dermatology and Director of the clinic. These are brilliant physicians with vision and caring for the patients and families they serve.
The members of the Rush University Medical Center cutaneous lymphoma clinic, take pride in the personal care for each patient – getting to know their history and understanding their disease.
The most difficult work, albeit very rewarding, is helping support the very small percentage of patients whose disease progresses. The vast majority of patients suffer from a smoldering, non-progressing form of the disease. Unfortunately, a small portion of patients present with advanced disease or are in a relapse. These patients present challenges as they require staging and sometimes difficult treatments.
As one of the first people who sees the patient after diagnosis, Ms. Uzelac take this role very seriously. The team takes the time to explain the disease and try to ease any fears the patients or their loved ones may have. One of the most important jobs is educating the patients.
Thanks to the Cutaneous Lymphoma Foundation, helping patients with education and support is one of the easiest parts of her job. The CLF website, brochures and local regional symposia and workshops provide patients with a myriad of opportunities to learn about their disease and connect with fellow patients and caregivers.
Danica Uzelac is the Clinical Research Coordinator and Photopheresis Clinician at the Department of Dermatology, Rush University Medical Center