Making a Difference Through Research
Source: Michael Samsot
"Although we rarely have more than four patients at any one time being treated by my branch, the work can be very intense," says Cathryn Lee, Oncology Nurse Practitioner at the National Cancer Institute (NCI) of the National Institutes of Health in Bethesda, Maryland. "The major focus of the NCI, of course, is cancer research, and the branch I work for focuses on immunodeficiency disorders and malignancies." Current research involves the use of monoclonal antibodies in the treatment of various T-cell malignancies.
Because a patient's condition can change dramatically in a very short time, Lee and those who work with her in the Metabolism Branch of NCI must carefully monitor each patient, collecting data and documenting everything. For example, one of the diseases being studied is adult T-cell leukemia. "A healthy person normally has 5,000- 10,000 white blood cells (leukocytes per mm3), but a person with adult T-cell leukemia might have as many as 300,000- and they grow at a phenomenal rate, sometimes doubling their number overnight," she says. "The survival rate is awful, measured in months- in fact the condition is considered fatal, but right now, we do have patients who have responded and a couple who have survived for several years.
"The disease we treat most," Lee says, "are those that show alterations in the T-cells." She describes some of the specifics. "These T-cells have unique receptors on them, and in the lab where I work, scientists have developed an antibody that will match up with them. The first antibodies were made from mice. Now they're taking those antibodies and altering them to appear more human, attaching a radioactive substance and injecting them intravenously." The effort, she says, is directed at getting the antibody to recognize the abnormal T-cell, hook onto its receptor, and kill the cell- all before the body recognizes the radioactive antibody as something foreign.
Lee began working at NIH in April of 1995. She had finished nursing school in 1987 and decided a few years later to go through the NP program, "after working as a staff nurse for two years and realizing that I wanted to advance my career and education. I had no interest in administration," she says, "so I looked into Oncology Clinical Specialist and NP programs. I concluded that the NP role best suited my desire to work directly with patients at the bedside and to function more autonomously. On a practice level, I also wanted a career that would provide me with more options in terms of work schedule and raising a family. [Currently on maternity leave, Lee recently gave birth to her third child and will return to work part-time this month, full time in January.]
After completing the Master's/NP program in 1992, Lee began working in the District of Columbia. "I was functioning more as an oncology research nurse than as a Nurse Practitioner," she says, but she was looking for something more. "I like the autonomy I have here and really enjoy the work. At present I work primarily on screening new patients for our trials. I also follow patients enrolled in active trials in collaboration with the branch physicians. The patients can become very ill quickly because we see very serious conditions such as HTLV-I (Human T-cell Lymphotrophic Virus type one) associated Adult T-cell Leukemia/Lymphoma. We also see cutaneous T-cell lymphoma (mycosis fungoides and the Sezary Syndrome), peripheral T-cell lymphoma, T-cell-type large granular lymphocytic leukemias, and various immunodeficiency disorders. Because these disease are relatively rare, though, our patient volume is fairly low. In average week I usually see no more than six patients. In addition to patient care I also perform research duties such as data collection and preparing reports for the FDA. I also work on the writing and amending of the research protocols.
Lee says that one condition they see, mycosis fungoides, (MF, a type of T-cell lymphoma) is often particularly frustrating "because many of our patients come to us after years of having the condition misdiagnosed as psoriasis and having undergone numerous treatments. By the time they get to us, they're tired, confused. This condition causes ugly lesions on the skin and can cause severe itching; lesions are often on the hands and feet, but can show up on the face or any part of the body as well. Whereas MF is not as acute as other lymphomas, doesn't tend to spread to other organs, and doesn't cause as rapid a death as other lymphomas, there still is no cure." However, Lee says, they have had some people who have shown positive response to treatment, accompanied by a slowing of the progression of the disease.
"This is a research center and our patients come from all over the country, (occasionally, also from other countries), by referral only," she continues. "We provide very limited primary care, and once patients have completed or are off the research study, they are returned their referring health care provider." However, for those who are in the studies, "the majority, if not all, of a patient's care is paid for by the NIH, which is federally funded.
"One interesting case we've had," Lee says, "is that of a young man, in his 20s now, from one of the Southern states. He has hypogammaglobulinemia, an immunodeficiency disorder, and he also had two brothers who died of the same disease. He's been followed here since he was a toddler. It's a genetic disorder- a lot of the immunodeficiencies are genetically carried. He has survived multiple severe infections, and multiple medical problems, and comes to us whenever he gets something they can't handle at home. Unfortunately, either a lot of the things he gets are resistant to treatment or he's allergic to the antibiotics. Over the years, though, we've juggled various medications to keep him going." That he has survived this long could be considered a success story, Lee says.
As is the case in most research studies, a patient has to meet certain criteria in order to be included- and that usually means that prior treatments for their conditions have been unsuccessful. There are certain conditions that will prevent a prospective patient from being including in one of these trials, Lee says. "There's a checklist of things they cannot have, such as congestive heart failure, a mental illness that would prevent co-operative participation in the trial, renal failure- basically, anything that would give them serious, life-threatening problems [besides their primary disease] as they go through the trials. Multiple problems could also keep a person out of a study. Telling someone they can't be included in a study- I hate that part of it, but we have to be sure they fit into a certain mold so that we get good, clean research results.
"Most of our patients," Lee continues, "have tried every medical intervention available before they come to us and nothing has cured them. Many are very ill and will die without treatment. Usually, there are no cures for the diseases we treat. We have to balance the patient's need for some hope with the reality that we are conducting research and cannot promise miraculous cures. We try to be very clear about that, very straightforward. I do a lot of talking to describe to them exactly what will and what won't be done. The research team is often as disappointed as the patient if treatment fails, and we are equally thrilled when the disease responds to our experimental treatment."
Screening patients for research protocols and monitoring those already enrolled in protocols make up a part of Lee's daily responsibilities. "I see both inpatients and outpatients," she says, "perform History and Physicals, order and interpret lab and diagnostic tests, order appropriate medications, consultations and treatments. In addition to these duties, I am also involved in the direct administration of our investigational therapeutic agents, monoclonal antibodies. Most of these are given intravenously, and some must be given in the Nuclear Medicine Department because they are labeled with radioactive isotopes. All patients must meet specific eligibility requirements and sign an informed consent document in order to participate in clinical trials.
"Much of what is done for the patients is mandated by the written research protocol in which they are enrolled. I present my patients at our branch rounds (held twice a week) and communicate often with referring physicians from outside the NIH. I am permitted to perform various procedures, such as bone marrow biopsy, thoracentesis, skin biopsy, and lumbar puncture."
Lee talks about what she believes are some of the biggest challenges in this field. "This area of clinical research is constantly changing, with new discoveries and many unknowns. The other side of the coin is that advances are slow, treatments may not work as well in the clinic as they did in the lab, and there may be unanticipated side effects.
"I continue to be interested in other areas of oncology, including cancer prevention and the role of genetics," Lee says. She comments that because of the limited range in diagnosis and treatment of the patients she sees, she has to make extra effort (outside of the job) to keep up to date: staying current with the literature, communicating with colleagues, and attending seminars and conferences. "I belong to the Oncology Nursing Society and attend local and national ONS and Nurse Practitioner organization meetings.
"Of interest here is that the number of NPs in this facility has doubled in the past year," Lee says. "We have gone from about ten to nearly 20 in the several different institutes throughout the NIH. Here, many of the physicians who do clinical work are rotating through in one, two or three years on fellowships and training programs in their specialty. The NPs, however, generally have more continuity. This is one of the great things about being an NP here: we know the programs and how they work; we can help familiarize the new physicians coming in to the way things are set up; and we see all the patients from their very first day here- and can provide a continuous link, a friendly and understanding face as they go through their treatment."
Cathryn Lee received her Bachelor of Science degree in Nursing from the University of Maryland at Baltimore, in 1987. She received her Master of Science degree in Nursing (the Adult NP Program) from George Mason University in Fairfax, VA, in 1992. She is an Advanced Oncology Certified Nurse.
Michael Samsot is a freelance writer in Ellicott City, MD. She is on the Editorial Staff of NEWSLine for Nurse Practitioners.
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