	Myelodysplastic syndromes (MDS) are a group of hematological conditions affecting the blood stem cells in the bone marrow. In patients with MDS, the blood stem cells fail to mature into functioning red blood cells, white blood cells (WBCs), and platelets. Within normal developing marrow cells, normal myelobasts develop into neutrophils, eosinophils, and basophils. The emergence of abnormal myeloblasts gives rise to nonfunctioning WBCs, which leads to low blood cell counts, which can cause anemia, increased risk of infection, and easy bleeding or bruising. Other symptoms include fevers and sweats, poor appetite, and weight loss. MDS can develop into acute myeloid leukemia (AML), an aggressive cancer of the bone marrow.

	At presentation, the majority of MDS patients are aged >60 years. Diagnosis of MDS is made through bone marrow biopsy. There are several types of MDS, including refractory anemia, refractory anemia with ringed sideroblasts, refractory anemia with excess blasts, refractory anemia with excess blasts in transformation, refractory cytopenia with multilineage dysplasia, and myelodysplastic syndrome associated with an isolated del(5q) chromosome abnormality (5q- syndrome).

	The case study below highlights a patient with 5q- syndrome, which is characterized by a deletion of part of the long (q) arm of human chromosome 5. The MDS subtype is considered low-risk with a relatively low likelihood of developing into AML (Giagounidis AA, et al. 

 Increase in moderate amounts of fatigue and dyspnea on exertion for 6 months.

 The patient is a woman aged 72 years who has developed macrocytic anemia over the past year. Gastroenterology evaluation resulted in a negative colonoscopy. The patient was referred to hematology for an evaluation in August 2010. Laboratory studies from August 5, 2010, revealed a WBC count of 3.3 with 1200 neutrophils, hemoglobin 9.4, an MCV of 108, and a platelet count of 344,000. She had normal vitamin B12 and folic acid levels. Her reticulocyte count was unusually low at 2.2%. She had normal iron stores and normal iron saturation. The patient’s renal and hepatic functions were confirmed to be normal.

	She subsequently underwent a bone marrow biopsy on September 20, 2010, which was consistent with MDS. Specifically, the marrow was described as being normocellular 40% with a relative megakaryocytic hyperplasia, including dysplasia. There were also approximately 6% to 8% immature myeloid cells present with interstitial clustering. Stainable iron was present. Flow cytometry confirmed 5% to 6% blast forms, expressing the myeloid antigens CD33, CD13, CD34, CD117, and HLA-DR. Cytogenetics revealed a deletion of 5q in 16 out of 20 examined cells. There were no additional clonal abnormalities. FISH studies also confirmed the presence of the 5q abnormality. Past medical history: Significant for hiatal hernia and hypertension. Diagnosed with breast cancer in 1975 and treated with 1 year of oral melphalan.

 Mastectomy in 1975. Medications: Atenolol, nifedipine, hydrochlorothiazide.

 The patient is widowed. She previously was employed as a nurse. Rare alcohol use. One-half pack per day tobacco use. No illicit substances. No toxic exposures.

 Father died from pancreatic cancer at age 57. Mother died from supranuclear palsy at age 87. No siblings. Three children in good health.

 Postmenopausal since age 39. Gravida 3, para 3.

 White woman. Well dressed and well nourished. In no acute distress.

 Temperature, 98.7 F; heart rate, 59 beats/min; blood pressure, 125/78 mm Hg; central venous oxygen saturation, 99%; height, 59 in; weight, 174 lb.

 Supple, no jugular venous distention, no significant lymphadenopathy.

 Soft, nontender, and good bowel sounds in all 4 quadrants. No organomegaly.

No edema, cyanosis, clubbing. Blood count, September 20, 2010: WBC, 3.9; hemoglobin, 9.4; platelets, 321,000.

		Hackensack University Medical Center, New Jersey

	The patient is aged 72 years with a past history of breast cancer treated with mastectomy and 1 year of oral melphalan therapy. In 2010, she was noted to have a mild macrocytic anemia with a mild leukopenia. She underwent gastrointestinal evaluation, which was unremarkable. She then had a bone marrow biopsy, which was consistent with having MDS. Her cytogenetics revealed a sole abnormality consisting of deletion 5q.

	MDS are a heterogeneous group of bone marrow failure disorders. If left untreated, MDS will progress into the development of acute leukemia. This patient has a unique subtype of myelodysplasia, the 5qsyndrome, which places her in a median survival group of >63 months (Mathew P, et al.

	This subtype of MDS is considered favorable, according to the International Prognostic Scoring System (IPSS) developed by Greenberg and colleagues in 1997. The IPSS utilizes the number of lines of cytopenias, the type of cytogenetic abnormalities, and the presence of blast forms to place patients into prognostic groupings. Using these factors, patients with MDS are assigned to 1 of 4 risk groups: low risk, intermediate-1, intermediate-2, or high risk.

	The patient has only severe anemia and would get <1 point on the IPSS scale. She has a favorable 5q minus, which receives 0 points. She does have between 5% and 6% blast forms, giving her a half point. Therefore, she is categorized as low risk when evaluating her prognosis.

	There are several treatment choices available for patients diagnosed with MDS. The treatments include growth factors such as Procrit (epoetin alfa) and Neupogen (filgrastim). Hypomethylating agents, such as 5-azacytidine and decitabine, are often used as low-intensity therapies. Anti-thymocyte globulin (ATG, often used in conjunction with cyclosporine) is another treatment choice. Lenalidomide (Revlimid) is FDA-approved for patients with MDS containing a 5q- abnormality.

	It was decided that the patient would receive lenalidomide. The drug’s FDA approval was based on a series of trials. The MDS-001 trial (List A, et al. 

. 2005;352(6):549-557) demonstrated that lenalidomide was able to improve hematopoiesis in a cohort of patients with myelodysplasia. In a retrospective review of the study, the authors noted that those patients who had a 5q abnormality had a significantly higher rate of response.

	The subsequent MDS-003 trial (List A, et al. 

 2006;355(14):1456-1465) clearly demonstrated the responsiveness of patients with 5q- syndrome to lenalidomide. Overall, approximately two-thirds of patients who were transfusiondependent with 5q- syndrome became transfusion independent within 4 to 6 weeks, representing an extremely dramatic response. Patients who had low blast percentages also saw significant reduction. Patients were also noted to have improvement in the clonal cytogenetic abnormality.

	It is important as a nurse practitioner to review the side effects with both the patient and caregivers if present at each office visit. Side effects related to taking lenalidomide include thrombocytopenia, serious birth defects (thus, it is important not to become pregnant while taking Revlimid), neutropenia, blood clots, skin reactions including rashes, and tumor lysis syndrome. Patients are asked to come to the oncologist’s office on a weekly basis for 8 weeks to review the blood counts and any side effects the patient may be having, or to answer any questions pertaining to starting this therapy.

	The patient was prescribed 10 mg of lenalidomide daily. The process to fill the prescription involves several steps. The oncologist’s office first enrolls the patient into a RevAssist program database. A Revlimid patient-physician agreement provides information on safety risks. Additional information reviewed includes how the patient should properly handle the medication upon receiving a shipment from the specialty pharmacy. Ultimately, a contract is signed by both the patient and his or her oncologist. A review of prescription benefits is also done by the specialty pharmacy in order to dispense the medication. If there is a high copayment or the patient does not have any prescription benefits, Revlimid’s manufacturer, Celgene, offers a patient assistance program.

	In this particular case, the patient’s copayment was very high and she had to apply for assistance through Celgene. She met all of the criteria to receive Revlimid at no cost for 1 year, with the eligibility to reapply at the end of the year. The patient came to the office weekly for 8 weeks, experiencing only thrombocytopenia, which eventually resolved, with the remaining blood counts showing normal levels. Her blood counts as of February 14, 2011, were WBC, 4.7; hemoglobin, 12.3; and platelets, 159. Her blood counts as of April 14, 2011, were WBC, 3.4; hemogloblin, 12.5; and platelets, 80. She is still transfusion-independent and continues to take 10 mg of Revlimid daily.

Special thanks to Stuart Goldberg, MD, chief of the Leukemia Division at the John Theurer Cancer Center, for his assistance with the analysis.

Articles

Feature Story

Myelodysplastic syndromes (MDS) are a group of hematological conditions affecting the blood stem cells in the bone marrow.

Case Presentation: Myelodysplastic Syndromes

The “What Would You Do?” column answers clinical questions on topics for which evidence is lacking or controversial. Oncology nursing and vascular access leaders provide their expert opinions in answering these questions. Readers are invited to submit questions and comments to OncLive Nursing by sending them to 

	My short answer when asked questions like this is, “Never, ever, give chemotherapy without a blood return.” Even if an infiltrating medication causes no harm to the tissue (ie, non-vesicant), the device is not working as it was designed to function. I advise use of tissue plasminogen activator, with physician orders, to attempt restoration of blood return. If this does not work, I suggest a dye study be performed to evaluate the catheter function. If the dye study shows functioning is adequate with no backflow, it should be okay to administer non-vesicants via the line. However, I still recommend the “No blood return = No chemotherapy” approach. The reason is this is simple to remember for nurses. As nurses have varying knowledge sets and all nurses are susceptible to lapses of memory, I am concerned about the possibility of a vesicant being given inadvertently via a line that has no blood return. Therefore, “No blood return = No chemo.”

	Presence of a good blood return (usually defined as the ability to draw back 3 mL of blood within 3 seconds) is an indicator that the implanted port is where it should be—in the venous system. Lack of a blood return from an implanted port can occur from a number of causes, and must be investigated before the port is used for any reason (including non-vesicant chemotherapy administration). I would attempt to get a blood return (eg, reposition the patient, gently use a “push-pull” technique using a saline filled syringe), and if a blood return was still not evident, further intervention is needed (eg, declotting or dye study, depending on the suspected cause of the lack of a blood return). There is a reason that the port lacks a blood return, and unless a blood return is obtained&mdash;or a dye study verifies correct placement and patency of the device&mdash;it should not be used for chemotherapy administration. Even if a non-vesicant is administered, if the catheter has fractured, migrated, eroded the vein, or if the catheter has disconnected from the portal body, the chemotherapy will be delivered into the tissue and not into the venous system as intended.

 Lisa Schulmeister, MN, APRN-BC, OCN®, FAAN

	A blood return is important for administration of any medication. This is an important component of assessing catheter function. Lack of a blood return should result in further steps to assess catheter patency and potential causes, such as catheter malposition or a fibrin tail. If the cause is withdrawal occlusion, alteplase (tissue plasminogen activator), should be considered. Radiological studies may be needed to ascertain if there are catheter tip position and thrombotic problems.

 Lisa A. Gorski, RN, MS, HHCNS-BC, CRNI, FAAN

 Wheaton Franciscan Home Health & Hospice

	If an implanted port lacks blood return, troubleshooting and declotting of the line must be performed. If declotting does not re-establish a blood return, a chest x-ray should be done to confirm proper tip location. A dye study may be used to determine whether or not there is a problem with the placement and/or patency of the catheter. In an ideal world, nonvesicant chemotherapy would never be given through any central line unless blood return is present. In the real world what sometimes happens is…a dye study is done to confirm proper functioning of the catheter, and then the prescriber will order for the line to be used (for non-vesicant chemotherapy only). The question that staff are then faced with is, how often should the dye study be repeated if an absence of blood return continues. If the line continues to lack blood return, the line should be replaced. Central lines should flush easily and have a brisk blood return.

	Oncology and Hematology Clinical Nurse Specialist

 Sidney Kimmel Comprehensive Cancer Center

	To date, no studies have been conducted to give a research-based answer to this question. In general, it is highly recommended that correct placement of the distal catheter tip is verified by chest x-ray, cathetergram (dye study), or ultrasound prior to making the decision to use or not to use a port that lacks a blood return. However, a chest x-ray will only verify the location of the distal tip of the catheter. A cathetergram will provide visualization of the integrity of the catheter and can be used to determine if an occlusion is present. An ultrasound will identify the location and the presence of an occlusion if an occlusion is causing the lack of blood return from the catheter. To proceed with administration of a non-vesicant should require a physician order; however, if an untoward event occurs, the nurse could be held negligent.

What would you do

Oncology nursing and vascular access leaders provide their expert opinions to answer the question of whether a blood return needs be establised to administer non-vesicant chemotherapy.

What Would You Do: Would you use an implanted port that lacked a blood return to administer non-vesicant chemotherapy?

		Multiple myeloma patient Doug Rickert [right], with Ann McNeill, RN, MSN, APN, from the John Theurer Cancer Center multiple myeloma team.

	In 2001, Doug Rickert, a 46-year-old industrial management consultant and married father of 3, heard the life-altering words, “softball-sized tumor pressing against your spinal canal.”

	The tumor had been detected on an MRI, and, a subsequent biopsy at Hackensack University Medical Center (HUMC) revealed Doug had multiple myeloma. HUMC medical oncologist Andrew Jennis, MD, told Doug that while incurable, his cancer was manageable with a regimen that began with radiation, moved on to enrollment in a clinical trial of thalidomide (Thalomid), and also required treatment with several other drugs, including dexamethasone (Decadron), zoledronic acid (Zometa), and valacyclovir HCl (Valtrex). Ultimately, the goal was to prepare Doug for a stem cell transplant.

	Doug soon began a treatment course at HUMC (now the John Theurer Cancer Center) that would last 9 years. He knew that his family—his wife, 2-year-old son, and twin 5-year-old daughters&mdash;would be his inspiration during what would be a very literal fight for his life. What Doug didn’t yet know, but would soon realize, is that his nurses would be his lifeline.

		Multiple Myeloma: A Patient’s Treatment Journey

			January 2002: Enrollment in thalidomide (Thalomid) trial

			June 2002: Peripheral stem cell transplant

			July 2002: Beginning of 18-month remission

			December 2004: Thalidomide regimen reinitiated after relapse

			July 2006: Thalidomide replaced with lenalidomide (Revlimid); zolpidem (Ambien) added to aid with sleep

			October 2006: Temporary interruption of access to lenalidomide, necessitating return to thalidomide protocol before reinstatement of access to lenalidomide

			December 2006: Remission achieved and maintained for 25 months

			May 2009: Relapse and subsequent enrollment in carfilzomib trial; duloxetine HCl (Cymbalta) added to help control neuropathy

			August 2010: Remission achieved and maintained for 3 months

			December 2010-present: Entry into carfilzomib trial and subsequent maintenance regimen

	Only 7 days after his diagnosis, Doug began the regimen recommended by Dr. Jennis. This was only the first leg of Doug’s long treatment journey (see “Multiple Myeloma: A Patient’s Treatment Journey”), which would eventually lead to his enrollment in a clinical trial of carfilzomib (see 

), a selective, next-generation proteasome inhibitor that Doug is currently receiving in maintenance therapy.

	Without hesitation, Doug credits his nurses with seeing him through every twist and turn along the way, citing the compassion and take-charge attitude of those who cared for him during treatment, and the extraordinary knowledge and concern of those who prepared him for every eventuality of his drug regimens and trial protocols.

	A nurse named Anne Marie, who worked with Dr. Jennis, made a particularly strong impression on Doug early in the course of his treatment. “I really was astounded by the extent of her expertise and was truly touched by her compassion. In every way she was a true extension of my doctor, and was always there to answer questions, solve problems, and allay my concerns—something I’ve seen time and time again over the years.”

	It was, in fact, that combination of expertise and compassion that Doug needed and received during his first week-long hospitalization, when he got a taste of an unfamiliar and unpleasant feeling: helplessness. “Any movement was painful, and I was fighting the nurses who were trying to move me from the gurney to my bed,” he says. “Finally, one of the nurses looked me right in the eye and told me that I simply needed to stop. I still remember her saying, ‘This is what we need to do, and this is how we’re going to do it.’ At that moment I just let her take charge and do what needed to be done. It was actually a relief to give over that momentary control to someone who knew what she was doing.”

		Multiple myeloma patient Doug Rickert celebrates Father’s Day 2002 with his son and twin daughters after undergoing peripheral stem cell transplantation. He carries this photo in his briefcase to this day.

	Doug credits a number of nurses with helping him to navigate the clinical trial process, but is especially grateful to Multiple Myeloma Division Oncology Research Nurse Coordinator Laura McBride, RN, BSN, OCN®, CCRP, who he says took great pains to make sure he knew what to expect. “We do all we can to inform our clinical trial patients about known treatment effects,” she says, “but equally important is our ability to make patients understand that we don’t always know all the short- and long-term adverse effects associated with a particular drug in an early-phase trial; hence, the reason the drug is being studied.” It is because of this uncertainty, says McBride, that the research team makes every effort to forge a true partnership with clinical trial patients, and to give each patient a go-to person for questions and concerns. “There’s no doubt that Doug’s optimism and upbeat attitude helped him through the process,” she says.

	Doug’s memories of his clinic visits during preparation for his stem cell transplant are just as vivid. “Back then the process was sterile and lonely, with virtually no visitors allowed,” he says. He recalls the tedium of the daily trips between his HUMC patient apartment and the clinic, where he spent 8 hours each day, and also recalls the attentiveness of his nurses and the way they walked him through each step of the process and made certain he knew what to expect. “I was lucky that I tolerated almost all of my treatments very well and didn’t experience most of the side effects I was told about,” he says. “But knowing what might happen gave me a sense of control.”

		Carfilzomib, a selective, next-generation proteasome inhibitor that has demonstrated encouraging response rates and tolerability in patients with advanced multiple myeloma, was granted orphan drug status by the FDA in 2008. In December 2010, positive results from a phase IIb 003-A1 study of single-agent carfilzomib for patients with relapsed and refractory multiple myeloma were announced. Only a month later, in January 2011, the drug was granted fast-track designation by the FDA, giving hope to the more than 50,000 US residents currently living with this second most common hematologic cancer, as well as to the 20,000 diagnosed with the disease each year.

		Through the fasttrack designation, Onyx Pharmaceuticals has initiated a rolling submission of a new drug application (NDA) for possible accelerated approval. With the nonclinical section of the NDA already submitted, Onyx hopes to complete submission as soon as possible.

		Currently, the “Carfilzomib Development Program” includes a large, international, randomized phase III trial (ASPIRE), in which investigators are studying the combination of lenalidomide (Revlimid) and low-dose dexamethasone (Decadron) with and without carfilzomib in patients with relapsed multiple myeloma. A second phase III trial (FOCUS) is being conducted in Europe, and involves analysis of carfilzomib in patients with relapsed and refractory disease. An investigator-sponsored program is also evaluating the drug as a first-line multiple myeloma treatment, in combination studies, and to treat lymphoma and other malignancies.

David S. Siegel, MD, PhD, chief, Multiple Myeloma at John Theurer Cancer Center discusses the FDA approval process for Carfilzomib

	Throughout it all, Doug kept a promise to himself to never “play the cancer card” or use his illness as an excuse. “That would have gotten me nowhere,” he says.

	Indeed, it’s Doug’s optimism and positive attitude that John Theurer multiple myeloma team member Ann McNeill, RN, MSN, APN, admires most about the patient she first met in 2005. “I’m a firm believer in the role that emotions and attitude play in coping with a cancer diagnosis,” she says. “Doug’s attitude has always been positive, and there’s no doubt that his optimistic outlook has been an asset.”

	McNeill goes on to note that frequent office visits, scheduling of diagnostic tests, undergoing treatment, and dealing with adverse effects can all be extremely challenging, adding that patients and family members often seek out nurses to answer their questions and allay their concerns. “Supporting our patients by clearly outlining treatment plans, providing calendars that delineate those plans, and providing assistance in making follow-up appointments will likely help to reduce anxiety,” she says.

	Doug, who is especially grateful to McNeill for an unrivaled level of compassion and accessibility, says he was able to essentially carry on with his life and work because he knew what to expect throughout the course of his treatments. “When patients are educated about their medications and their potential adverse effects, they’re more likely to comply with the treatment regimen,” says McNeill. “Open communication is the key.”

	Today, Doug isn’t always sure whether his aches and pains are due to his myeloma or to the fact that he’s now nearly a decade older than when he began his journey. He has neuropathy but overall “feels great” and has hope for the future. He does his best to encourage others just beginning the struggle that he now knows so well, and also attends multiple myeloma fundraisers and volunteers his services at a local blood bank.

	At home, Doug’s cancer is rarely a topic of discussion. “My hospital bracelet is the only clue that I’ve been at the clinic for treatment,” he says. “I don’t want anyone to make a fuss. It’s just a fact of life, a necessary evil.”

	Even so, Doug allows himself a small indulgence in the form of a now-wrinkled photo he keeps in his briefcase. “It was Father’s Day 2002 and just about a week after my transplant when the kids were given special permission to visit. Their smiling faces, along with my sunglasses and headphones, remind me that life went on even then, and certainly goes on now. It’s all about attitude, and it’s all about hope.”

Patient Focus

In 2001, Doug Rickert, a 46-year-old industrial management consultant and married father of 3, heard the life-altering words, "softball-sized tumor pressing against your spinal canal." 

Living With Multiple Myeloma: Nurses as the Lifeline

 Now more than ever, oncology nurses need to be able to fill the knowledge gap and accurately educate their patients and the public about cancer screening tests and their frequency.

	The news media has done a good job of informing the public about cancer screening. So good, in fact, that it seems that not a day goes by without hearing that one organization or another has issued updated guidelines and recommendations. As oncology nurses, we’re expected to be knowledgeable about cancer screening. Our patients, the public, and even our own health depend on our having an accurate and up-to-date knowledge base.

	Let’s start with mammograms. In July 2011, the American College of Obstetricians and Gynecologists (ACOG) issued new breast cancer screening guidelines that recommend that women begin having screening mammograms annually at age 40. Previous ACOG guidelines recommended mammograms every 1 to 2 years starting at age 40 and annually beginning at age 50. ACOG cited the incidence of breast cancer, the sojourn time for breast cancer growth, and the potential to reduce the number of deaths from breast cancer as the rationale for revising their breast cancer screening guidelines.

	Now on to cervical cancer screening. Current cervical cancer screening guidelines, issued by the American Cancer Society (ACS) in June 2011 and ACOG in November 2009, recommend a combination of a Papanicolaou (Pap) test and a human papillomavirus (HPV) test for women age 30 and older. Upon screening, if the results of these 2 tests are normal, women can wait 3 years for their next cervical cancer screening test.

	In June 2011, researchers from Kaiser Permanente in northern California reported that their National Cancer Institute—initiated study of 33,818 women in community settings supports the ACS and ACOG recommendation. They concluded that concurrent Pap test and HPV testing allowed the screening interval to be safely extended to 3 years for women who had negative HPV tests and normal Pap smears.

	Despite the evidence and recommendations from well-respected and reputable organizations, there’s been reluctance to implement a 3-year cervical cancer screening interval recommendation in clinical practice. Researchers from the Centers for Disease Control and Prevention (CDC) recently found that primary care providers still recommend annual cervical cancer screening. According to the study, <15% of the 592 physicians surveyed extend the screening interval when using the Pap and HPV tests together, as the ACS and ACOG guidelines recommend. The CDC analysis found that there is a need for healthcare provider education, and noted that use of Pap and HPV testing and adherence to the extended screening interval reduces patient harm caused by overtesting, such as pain, inconvenience, morbidity, and unnecessary followup procedures and treatments. The CDC researchers also identified the need for continued surveillance on cervical cancer screening guideline adherence.

	Obviously, adhering to cancer screening interval guidelines requires awareness and knowledge of the currently recommended guidelines. As oncology nurses, we need to stay abreast of cancer screening guidelines and counsel our patients appropriately. For many women, lowering the age at which breast cancer screening should begin makes perfect sense. However, increasing the interval of cervical cancer screening from annually to every 3 years is not as easily understood. After all, even physicians are grappling with the new interval recommendation. Now more than ever, oncology nurses need to be able to fill the knowledge gap and accurately educate their patients and the public about cancer screening tests and their frequency.

	Lisa Schulmeister, RN, MN, APRN-BC, OCN®, FAAN, is an oncology nursing consultant and adjunct assistant professor of nursing at Louisiana State Health Sciences Center in New Orleans, LA, and the editor-in-chief of 

			American College of Obstetricians and Gynecologists. Annual mammograms now recommended for women beginning at age 40. 

			American Cancer Society. Cervical Cancer: Prevention and Early Detection. 

			American College of Obstetricians and Gynecologists. ACOG Practice Bulletin no.109: cervical cytology screening. 

			Katki HA, Kinney WK, Fetterman B, et al. Cervical cancer risk for 330,000 women undergoing concurrent HPV testing and cervical cytology in routine clinical practice. In: 

 29 (15 suppl). Chicago, IL: American Society of Clinical Oncology; 2011. Abstract 1508.

			Roland KB, Soman A, Benard VB, et al. Human papillomavirus and Papanicolaou tests screening interval recommendations in the United States [published online ahead of print June 12, 2011].

Nurse's Notes

Now more than ever, oncology nurses need to be able to fill the knowledge gap and accurately educate their patients and the public about cancer screening tests and their frequency.

Cancer Screening: Are You Recommending the Right Intervals?

 Every day, oncology nurses provide care to patients who rely on them not only for their physical care, but also emotional and even spiritual care. Close relationships are formed as the oncology nurse cares for these patients and families over a period of time. Many oncology nurses may find themselves unprepared for the emotional challenges that arise in caring for these patients and their families. These emotional issues can include things such as the death of a patient with whom the nurse has developed a close relationship, a moral or ethical dilemma that the nurse has seemingly no control over, or a chaotic family situation in which the nurse’s therapeutic communication techniques have been challenged.

 The oncology nurse may be left feeling physically, emotionally, and spiritually drained.

	Compassion fatigue was first mentioned in relation to professional healthcare in 1992 by Carla Joinson.

 Joinson identified behaviors characteristic of compassion fatigue. These include chronic fatigue, irritability, dread of going to work, aggravation of physical ailments, and a lack of joy in life. Figley

 defined compassion fatigue as a state of tension and preoccupation with the individual or cumulative traumas of clients.

	Oncology nurses expend a tremendous amount of energy and concern over the long term as they care for patients who may or may not recover from their illness. Compassion fatigue may not happen with the care of 1 patient, but the repeated exposure to oncology patients may lead to the condition.

			Receiving unusual amount of complaints from others

			Complaining excessively about administrative functions

			Reoccurrence of nightmares or flashbacks to a traumatic event

			Apathy, sadness, no longer finding activities pleasurable

	We do not want to confuse compassion fatigue with burnout. Very often, the terms are used interchangeably. However, Potter et al

 make the case that while compassion fatigue and burnout are closely related and the definitions can often be ambiguous, the definitions of burnout point to environmental stressors, while the definitions of compassion fatigue address “the relational nature of the condition.” Distinguishing between burnout and compassion fatigue is difficult and controversial. Although burnout often results in less empathic responses to patients, removal from emotion-laden clinical situations, and leaving one’s clinical position, compassion fatigue may result in more emotional giving that ultimately ends with an inability to attain a healthy balance of empathy and objectivity.

	Compassion fatigue can have far-reaching effects. It can affect an entire organization, with increased and chronic absenteeism, increase in workers’ compensation claims, high staff turnover rates, and friction between employees, staff, and management. Since many caregiving institutions are nonprofi ts, they inherit added challenges such as low wages, lack of space, high management turnover rate, and constantly shifting priorities.

	For the oncology nurse, combating compassion fatigue starts with recognizing the symptoms and making changes that lead to a personal transformation. You should have an internal locus of control. Ask yourself, “What can I infl uence?” Develop a personal statement to guide your life, self, and family. Also ask yourself, “Why am I in this profession? What is my mission?”

	Improvement starts with developing your own self-care plan and techniques to incorporate into your life that improve compassion fatigue symptoms. Start with learning mindfulness meditation, an excellent way to ground yourself. Find time to recharge your batteries daily, by committing to exercise and eating healthier. Make it a priority to engage with what you value most, which often means connecting with family and close friends.

	Speaking with managers, peers, spiritual advisors, friends, and family can also help alleviate symptoms.

	When compassion fatigue symptoms become overwhelming, professional assistance may be required, such as seeking out a trained counselor or mental health specialist.

	Kathleen Gamblin, RN, BSN, OCN®, is a thoracic oncology nurse navigator at WellStar Health Systems in Marietta, Georgia.

	Sharon Francz, LPN, BHA, is an oncology nurse navigator and the president and co-founder of the 

National Coalition of Oncology Nurse Navigators (NCONN)

				Aycock N, Boyle D. Interventions to manage compassion fatigue in oncology nursing. 

				Joinson C. Coping with compassion fatigue. 

				Figley CR, ed. Compassion Fatigue: Coping with Secondary Traumatic Stress Disorder in Those Who Treat the Traumatized. London: Brunner-Routledge; 1995.

				Potter P, Deshields T, Divanbeigi J, et al. Compassion fatigue and burnout: prevalence among oncology nurses. 

				Pfifferling JH, Gilley K. Overcoming compassion fatigue. 

Nurse Navigators

Every day, oncology nurses provide care to patients who rely on them not only for their physical care, but also emotional and even spiritual care.

Compassion Fatigue: When Caring Takes Its Toll

The Caring Ambassadors Program, Inc. (CAP) is a national nonprofit organization that provides information, referral to resources for personal support, and public advocacy for people at risk for or living with lung cancer or hepatitis C.

	Lung cancer is still the leading cause of cancer deaths nationally, causing an estimated 157,300 deaths in 2010. A lung cancer diagnosis also frequently leads to patients being stigmatized. The common question asked of people with lung cancer—“Did you smoke?”&mdash;carries a judgmental jolt of blame. However, former smokers and even people who never smoked also get lung cancer. When someone who has never smoked gets lung cancer, the stigma can create different “camps” in the patient community and dilute efforts to organize and work together toward a cure. CAP agrees with other patient-focused organizations that nobody “deserves” lung cancer, particularly when products that cause most lung cancer are both legal and strongly addictive.

	CAP is based in Oregon City, Oregon, and offers national programs built on the “we’re all in this together” approach of its founders. To maximize its services and effectiveness, CAP’s staff works together through a virtual office. Cindy Langhorne, CAP Lung Cancer program director, is enthusiastic about CAP’s Lung Cancer Program and its commitment to providing accessible, accurate information about the disease, treatment options, and supportive care resources to as many people as possible.

	“We try to do a lot with today’s technology,” says Cindy. “Our website, 

, social networking, and e-mail really increase our reach, compared to the days of telephone hotlines.”

	The program’s newsletter, Choices and Hope, is available online, and Cindy posts and emails weekly “E-News” about lung cancer topics, and compiles a monthly review of relevant medical literature. Medical Writers’ Circle features articles by lung cancer clinicians, including oncology nurses and oncology social workers. Brenda Wilcox, RN, BSN, OCN®, wrote an inspiring and informative piece about the role of the patient navigator.

 Lung cancer patients and their families and friends express appreciation for this vital information. One grateful person wrote to say, “The CAP Lung Cancer Program was there for me and my family when we needed them most. They helped us to understand lung cancer and what to expect each step of the way. Thank you.”

	Lung cancer survivor Roberta “Birdie” Urban, a Caring Ambassador and member of CAP’s board of directors, knows the importance of understanding one’s treatment options. She recalls knowing, “I might not make it through the surgery. But the other choice was to do nothing. I wanted to try!” Cancer-free for 8 years, she shares her story of hope on the CAP Lung Cancer website. Other features on the website include sections on supportive care, complementary healing, information for children, and links to many useful resources.

	“There’s always more that we want to do to expand our services,” Cindy says, “We are in the process of producing an online book, Lung Cancer Choices, 1st Edition, similar to the Hepatitis C: Choices in Care book on CAP’s Hepatitis C site.”

	As with other nonprofit organizations, CAP cultivates donors and applies for program grants, a continuing and essential task. Corporate donors help support either specific projects or ongoing operations. Private donations often arrive with notes to honor or memorialize people with lung cancer. Cindy finds that recruiting and coordinating volunteers to help with outreach and event planning also takes energy and time. “It’s a lot of behind-the-scenes organizing,” says Cindy, “and our volunteers’ efforts really multiply our effectiveness.”

	CAP attends major conferences, such as the annual meetings of the Oncology Nursing Society and the American Society of Clinical Oncology, and networks with other organizations. For example, Cindy is the current chair of LungCAN, an action-oriented national coalition formed in late 2009. LungCAN consists of 24 member organizations that work to increase awareness of lung cancer and work collaboratively on initiatives that better the lives of those at risk for and living with lung cancer. “We encourage cooperation across our respective areas of focus,” explains Cindy, “and on the LungCAN site, we highlight each other’s events.”

	As CAP’s Lung Cancer Program evolves, it remains true to its formative vision. “CAP believes strongly in the power of people working together, and that by doing so, we will make far more significant advances than could be made by any group or discipline working on its own.”

	American Cancer Society. Cancer Facts & Figures 2010. Atlanta, GA: American Cancer Society; 2010.

Advocacy Spotlight

CAP is a nonprofit providing information, resource referrals  for personal support, and public advocacy for people at risk for or living with lung cancer or hepatitis C.

The Caring Ambassadors Program

 The noninvasive immunochemical fecal occult blood test (iFOBT) is highly effective at screening for colon cancer, according to a recent study published in the Canadian Medical Association Journal (CMAJ). The test examines the stool for hidden blood, which could come from anywhere in the gastrointestinal (GI) tract, and possibly indicates a colon tumor or precancerous growths known as polyps. The iFOBT is considered to have a greater sensitivity than the standard FOBT. If GI bleeding is detected, a follow-up colonoscopy is used to search for the origin of the blood.

	In the iFOBT study in CMAJ, researchers from Taiwan recruited nearly 2800 individuals to undergo iFOBT, blood tests, colonoscopy, and an upper GI tract endoscopy. The iFOBT correctly detected almost 90% of colorectal cancers, adenomas and significant lower GI lesions. The study also demonstrated that the iFOBT was ineffective at detecting upper GI tract diseases, such as esophageal or gastric cancers.

	John Theurer Cancer Center, Hackensack, NJ

	Colorectal cancer is the third most common cancer and the second leading cause of cancer deaths in the United States. An effective way to reduce mortality from colorectal cancer is to screen for it and its precursor, the adenoma. Unfortunately, in the United States, colorectal cancer screening is underused. Various factors contribute to this underuse, including patient factors such as lack of awareness regarding screening, lack of insurance coverage, and fear of undergoing colonoscopy.

	Colonoscopy still remains the gold standard and is recommended for individuals aged ≥50 years, assuming no increased risk factors. Patients with increased risk factors for colon cancer (eg, family history, history of inflammatory bowel disease, history of colonic polyps, and/or inherited genetic abnormality) require screening earlier than age 50 with colonoscopy. Colonoscopy not only detects colon cancers, but can remove precancerous polyps as well.

	Studies have shown that patient preferences for colorectal cancer screening tests vary, and many patients prefer the fecal occult blood test (FOBT) over more invasive tests (ie, sigmoidoscopy and colonoscopy). Given this information, the lower cost of FOBT compared with other screening methods, and the results of this study, it would seem prudent to utilize FOBT for those patients who are either unwilling or unable to undergo colonoscopy as screening. Any positive test result would then require colonoscopy, and patients might be more willing to undergo colonoscopy upon receiving a positive FOBT. Of course, FOBT will not detect adenomas (precancerous polyps); however, a new DNA stool test is being studied that could improve the detection of cancers and precancerous polyps.

	Therefore, FOBT may help increase colorectal cancer screening due to its non-invasiveness and low cost compared to alternative methods. Increased screening will lead to earlier detection, which would help reduce the number of colorectal cancer deaths. Any means of achieving that goal should be employed.

	Chiang TH, Lee YC, Tu CH, et al. Performance of the immunochemical fecal occult blood test in predicting lesions in the lower gastrointestinal tract [published online ahead of print August 2, 2011]. 

Updates

The iFOBT test examines the stool for hidden blood, which could come from anywhere in the GI tract, and possibly indicates a colon tumor or precancerous growths known as polyps.

Noninvasive Stool Test Effectively Detects Colon Cancer

 According to the National Cancer Institute, early screening and comprehensive assessment of risk for malnutrition is increasingly recognized as imperative in the development of standards of quality of care in oncology practices.

 Malnutrition is cited as a component in a large number of cancer deaths. Cachexia, a progressive wasting syndrome, is estimated to be the immediate cause of death in 20% to 40% of cancer patients.

 Despite this evidence, a 2007 survey by the Oncology Nutrition Certification Work Group reported that an estimated 80% of all cancer patients in the United States do not consult with a nutritionist. This figure may decrease in the years to come, however, with the emergence of the oncology nutritionist as an integral part of the cancer care team.

	The ideas of eating less sugar and more fiber, increasing antioxidant intake, eliminating foods that contain potentially carcinogenic ingredients, and drinking ginger tea to calm a queasy stomach might seem like common sense to some. But disseminating this kind of information is just one of the many tasks of the oncology nutritionist. Their work is wide-ranging, from helping a patient deal with mouth sores or nausea to teaching nutrient-dense recipes that can be made in a blender and ingested through a feeding tube to help keep up a patient’s strength during treatment.

		Kim Robien, PhD, RD, CSO, Masonic Cancer Center, University of Minnesota, Minneapolis.

	An oncology nutritionist is a registered dietitian who is a certified specialist in oncology (CSO), a credential received through the American Dietetic Association.

 Certification for oncology nutritionists was introduced in 2008 and is administered by the Commission on Dietetic Registration. CSO candidates must have 2000 hours in practice and pass an exam.

	In a discussion at the ASCO 2011 Annual Meeting, Kim Robien, PhD, RD, CSO, and Member, Cancer Outcomes and Survivorship Program, Masonic Cancer Center, University of Minnesota, Minneapolis, said there are currently 427 CSOs practicing in the United States and Canada. Other general nutritionists work with cancer patients, but many lack extensive training and experience in oncology.

	Oncology nurses who do not have a CSO available at their hospital can refer patients to the “Find an Oncology Dietitian” section of the American Dietetic Association’s website for its 

Oncology Nutrition Dietetic Practice Group

. The site also provides a wealth of other oncology nutrition resources.

		Robin McConnell, MS, RD, CSO, clinical nutrition coordinator at the John Theurer Cancer Center.

	One institution that has integrated oncology nutritionists into its treatment program is the John Theurer Cancer Center (JTCC) at Hackensack University Medical Center in New Jersey.

	Robin McConnell, MS, RD, CSO, is the clinical nutrition coordinator at the JTCC and 1 of 5 oncology nutritionists at the center who work with outpatients in all stages of treatment and recovery. As registered dietitian specialists certified in oncology nutrition, she and other staff members at the JTCC deal with challenges including depression, altered taste, anorexia, surgery, and the inability to process food. Their patients “have tremendous issues with eating,” she said, and the problem extends across the spectrum of cancers and cancer treatments.

	While limited research data are available on the use of nutrition to help cancer patients, success is a powerful persuader. In recent years, “I have seen an increase in the number of patients referred” for counseling, McConnell said. “When you see results and action, you are more likely to refer patients.”

	The earlier a patient gets counseling, the better, McConnell said. “The nutritionists are the point people” in the attack on cancer, she added, offering counseling before and during treatment in their role as part of the medical team that coordinates patients’ care. That team includes oncology nurses, who often make referrals. The decision to offer nutrition counseling to cancer patients without an extra charge puts the JTCC ahead of the curve; in the past, only hospitalized patients received nutrition counseling. For many, that was too late.

		VIVIAN ROE was 36 years old and pregnant with her third child in 2006 when she underwent a right-breast mastectomy and began chemotherapy after her first trimester. The treatments made her ill and the medications to treat those side effects made her frightened for her unborn child.

		So she made the radical choice to educate herself on how she could treat the side effects and help maintain her own health with food while discontinuing medications to alleviate side effects.

		Her illness predated the creation of an oncology certification for registered dietitians, so she did her own research and created a plan for herself.

		She gave birth to a healthy daughter and today is a 5-year breast cancer survivor.

		Today, Roe not only continues to follow a cancer prevention eating plan, but is cofounder of 

, an online guide that debuted in 2009, and uses oncology dietitians to craft individual nutritional plans for cancer patients.

		On TherapEase Cuisine’s website, patients provide their basic treatment and physical information and receive customized food and nutritional recommendations, plus the ability to send email questions to a dietitian. Customized recommendations are tailored to each subscriber’s diagnosis, medications, side effects, treatments, and food-drug interactions. 

		Vivian Roe, breast cancer survivor and cofounder, TherapEase Cuisine, with her daughter.

	Robien and McConnell both endorse the idea that each patient requires a personalized nutrition plan. “There is a much stronger need for individualized treatment,” Robien said at ASCO.

	With treatment, “there is the potential for dry mouth, painful swallowing, or thick mucus,” McConnell said. Some suffer loss of taste, fatigue, pain, nausea, vomiting, or mouth sores. Oncology nutritionists craft plans to deal with each of these.

	To build a plan, the oncology nutritionist assesses the patient’s needs and ability to meet those needs, McConnell said. She begins with evaluating food intake, including calorie, protein, and nutrient. Depending on the cancer treatment, she might take steps such as adding fiber or cutting back on sugar. “There are so many places where nutrition can make an impact,” she said.

	Educating patients to meet their own nutritional needs might include teaching them how to use a blender or a food processor and giving them recipes they can make in their own kitchen. If a feeding tube has been temporarily inserted, the blender may become a necessity.

	While some foods can specifically target side effects, the overall intent of treatment is wellness. Robien said the goals are to maintain lean body mass, prevent nutrient deficiencies, and minimize the impact of side effects. This is in keeping with the American Cancer Society (ACS) 2006 recommendations for cancer prevention.

 Those include eating ≥5 servings of vegetables and fruits each day, choosing whole grains over refined grains, limiting consumption of processed and red meats, and limiting alcoholic drinks to 1 per day for women and 2 per day for men.

	Oncology nutritionists strongly advocate for the efficacy of nutritional intervention in cancer care. Robien is the lead author of the article, “Evidence- Based Nutrition Guidelines for Cancer Survivors: Current Guidelines, Knowledge Gaps, and Future Research Directions,” which appeared in the March issue of the 

Journal of the American Dietetic Association.

 “Data support the hypothesis that nutrition interventions are not only likely to help with cancer outcomes, but can also be important in preventing and managing some of the chronic health conditions that can occur after cancer treatment, such as cardiovascular complications, weight gain, diabetes and other endocrine disorders, functional impairment, osteopenia, and osteoporosis,” Robien said.

	McConnell’s advocacy goes a step further. “I firmly believe patients can be healthier after a diagnosis of cancer than before,” said McConnell. With nutrition counseling, “Everything ties together,” McConnell added, “It’s really a remarkable opportunity to have people see the big picture. It’s not just about treatment, it’s about prevention and wellness.”

Journal of the American Dietetic Association

, Robien and her collaborators wrote that the ACS will update its nutrition and physical activity guidelines this year using a panel of experts who look at available scientific evidence. The current guidelines focus on cancer prevention, as do guidelines set by the World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR).

	Meanwhile, registered dietitians are intervening as early as possible to provide hope and practical advice. “Patients fear pain, nausea, and weight loss,” McConnell said. “They feel like their disease is out of control.” Working with a dietitian’s plan, they feel like they can regain some of that. “Knowledge is power,” she said, “and can take away fear.”

			National Cancer Institute. Nutrition in Cancer Care (PDQ®). 

			The American Dietetic Association: The Oncology Nutrition Dietetic Practice Group. 

Cover Story

Early screening and comprehensive assessment of risk for malnutrition is increasingly recognized as imperative in the development of standards of quality of care in oncology practices.

September 2011