	Oncologists are focused on treating a patient’s cancer. They want to eliminate tumors, minimize the side effects of chemotherapy and radiation therapy, prevent the disease from spreading, and focus on patient survival. While this treatment addresses a patient’s physical health, the mental state of the patient is something that might need more than an oncologist’s expertise.

	“We have wonderful medical technicians and clinicians who will treat the cancer itself,” said Wayne A. Bardwell, PhD, MBA, director, Patient and Family Support Service and the Doris A. Howell Palliative Care Service at the University of California, San Diego Moores Cancer Center. “But we need to be aware of the individual and the family support system that’s affected by the cancer as well.”

	Bardwell spoke at NCONN 2011 about psychosocial considerations in cancer patients, noting that gathering concrete data in this population can be quite difficult. The data that are available reveal that the most common mood disorder among cancer patients is depression, which can be triggered by everything from the initial diagnosis, to treatment, to changes in physiology. In breast cancer, Bardwell said it is estimated that as many as 55% of patients deal with depressive disorders, with 17% to 30% of patients experiencing depression well into survivorship.

		Factors associated with depressive symptoms in patients with early-stage breast cancer.

	Bardwell discussed a study he published in the 

 in 2006 that reported the unexpected finding that cancer-related variables such as treatment and diagnosis were not associated with breast cancer patients’ depressive symptoms (

). Rather, those depressive symptoms were more closely linked to psychosocial variables beyond cancer.

	“The quality of the individual’s social support network, whether or not they had insomnia, whether or not they felt comfortable expressing their feelings, these were factors that we understand are important risk factors for depression in the general population, and they turned out also to be the important factors in this breast cancer population,” Bardwell said. “The surprise was that these very specific cancer variables such as cancer severity or type of treatment were unimportant in understanding who might get depressed.”

		Cancer patients’ psychosocial needs have only recently begun to be addressed as part of comprehensive cancer care by nationally recognized organizations, such as the American College of Surgeons, ASCO, and NCCN. Wayne Bardwell, PhD, MBA, spoke to the NCONN attendees specifically about the complexity of these patients’ psychosocial needs.

		Bardwell emphasized the importance of early and ongoing assessment. Though a cancer diagnosis is not predictive of depressive symptoms, early and ongoing intervention is important for quality of life. This can also have an impact on overall survival, though further studies are needed to determine the significance and relevance of this theory.

		ASCO Standards for Psychosocial Care were implemented in 2008. While participating practices saw an increase in the assessment of newly diagnosed patients, rates for taking action did not change.

		Bardwell reviewed active listening skills, which are helpful for developing a therapeutic relationship with cancer patients and their families. Having a healthy therapeutic relationship with patients is a crucial aspect of patient navigation, particularly when action is needed in a timely fashion. He also discussed common emotional needs that patients may have during the continuum from diagnosis to survivorship. He closed by remarking on healthy coping habits and skills, and left us with some inspirational quotes.

	At the NCONN conference, Bardwell suggested a number of actions that nurses can take to minimize depressive episodes in cancer patients. Active listening, providing valuable feedback, and responding to the patient’s questions and concerns appropriately are among the ways nurses can ensure that patients’ mental health concerns are properly addressed.

	Bardwell said that physicians often tell patients that they have nothing to fear after being given a cancer diagnosis, yet even though the practitioner might have the best of intentions, saying that might leave the patient feeling ashamed or misunderstood. Letting patients speak and offering them help might be a better approach to allaying patients’ concerns.

	“We have a tendency to want to help people solve their problems,” Bardwell said, “but there’s a power in just listening to an individual describe what’s going on with them.”

	The overall accessibility of psychosocial care for cancer patients will receive a tremendous boost next year from an update to the Cancer Program Standards of the American College of Surgeons Commission on Cancer (CoC). Starting in 2012, all cancer programs seeking accreditation from the CoC will be required to screen and evaluate patients to identify psychosocial issues impeding patient progress during treatment and survivorship. The new standard will additionally require that all CoC-accredited oncology programs either have psychosocial services onsite or be equipped to link patients to the proper resources.

	Bardwell WA, Natarajan L, Dimsdale JE, et al. Objective cancer-related variables are not associated with depressive symptoms in women treated for early-stage breast cancer. 

Articles

Conference Highlights

Cancer treatment addresses a patient's physical health but the mental state of the patient is something that might need more than an oncologist's expertise.

Psychosocial Considerations in Cancer Care

	Bisphosphonates—antiresorptive medicines used to reduce the loss of bone mass related to bone metastases or treatment toxicity&mdash;are associated with an increased risk of osteonecrosis of the jaw (ONJ). At NCONN 2011, Kenneth E. Fleisher, DDS, associate professor, Department of Oral and Maxillofacial Surgery, New York University, discussed ONJ related to antiresorptive therapy.

	The American Association of Oral and Maxillofacial Surgeons (AAOMS) has a 3-tiered definition of bisphosphonate-related ONJ (BRONJ):

		Current or previous bisphosphonate treatment

		Exposed bone in the maxillofacial (jaws and face) for >8 weeks

		No history of radiation therapy to the jaws

	Fleisher said current evidence-based research suggests ONJ is a process that involves immunologic, bacterial, and anatomic changes. While some patients may be asymptomatic, others have pain, infection, bone destruction, and/or oral dysfunction.

	The highest BRONJ rates are observed in patients with multiple myeloma and breast cancer. Additionally, the disease more commonly occurs in the lower jaw than in the upper jaw.

		Otolaryngology Clinical Nurse Specialist

		The Ohio State University Medical Center, Columbus

		The use of an interdisciplinary team is imperative to managing patients with cancer who are going to receive bisphosphonate treatment. Having a dentist or oral surgeon as part of the oncology team would greatly benefit the patients assuring they have thorough dental exams and needed procedures prior to starting therapy. This would then allow the role of the nurse to include assessment, evaluation, and coordination of care of these patients.

		Excellent oral assessment is crucial to discovering early stages of ONJ. Patients with ONJ typically present with mandibular pain, purulent oral secretions, poor wound healing in the affected areas, and spontaneous intraoral tissue breakdown leading to exposure of necrotic maxillary or mandibular bone. Secondary infections may also occur (eg, actinomyces), resulting in osteomyelitis. Symptoms can range from negligible to severe, and often patients may be symptomatic for weeks to months.

		Stopping bisphosphonate therapy or using other medications has not improved outcomes. Research shows discontinuing bishphosphonate therapy can put the patient at a higher risk of further bone or skeletal related events related to their cancer. It had been hoped the nonbisphosphonate denosumab (Xgeva) would offer patients a safer option, however the incidence of ONJ with denosumab is similar to that of the bisphosphonates.

		Treatment of ONJ ranges from mild to aggressive, depending on the stage as defined by AAOMS. Nurses are critical in educating patients about treatments such as oral rinses and antibiotic use as a mild treatment. Candid discussions involving all members of the oncology team and the patient will continue to be necessary to providing the safest and most effective treatment plans.

		Lau AN, Adachi JD. Resolution of osteonecrosis of the jaw after teriparatide [recombinant human PTH-(1-34)] therapy. 

	BRONJ mostly occurs in patients taking zoledronic acid (Zometa), pamidronate (Aredia), or a combination of both drugs. BRONJ risk is greater with intravenous (IV) bisphosphonates, which may be related to the greater potency of these drugs and/or medical comorbidities for patients with metastatic disease and multiple myeloma.

	Fleisher said that denosumab (Xgeva) has similar rates of ONJ incidence as bisphosphonates.

	Most BRONJ cases are preceded by dental extraction; however, Fleisher noted that spontaneous development can occur. Other BRONJ risk factors include poor oral health, chemotherapy, anemia, diabetes, hypertension, methotrexate use, and steroid therapy. Fleisher also said his data do not support a positive correlation between bisphosphonate treatment duration and onset of BRONJ, thus suggesting there may be other contributory factors, such as infection.

	To reduce BRONJ risk before starting bisphosphonate treatment, patients should have dental examinations and complete all oral procedures, including tooth extractions, restorative dentistry, and periodontal treatment. Once bisphosphonate therapy begins, BRONJ assessment includes both questions and physical examination.

	Fleisher said nurses managing patients receiving bisphosphonates should ask about their dental history, including any recommendations for tooth extraction, and inquire about any recent oral symptoms, including pain, swelling, and neurological changes.

	Physical evaluation should include examination of the oral cavity, looking for exposed bone, swelling, or fistulas. If any of these symptoms appear, Fleisher said nurses should immediately refer patients to an oral and maxillofacial surgeon. Additionally, since some patients may not have exposed bone at presentation, nurses may need to advocate for diagnostic imaging.

	The AAOMS developed a staging system for BRONJ with accompanying treatment recommendations. Treatments range from antibiotics and antibacterial mouth rinses to surgical removal of necrotic bone.

Exclusive Interview With Kenneth E. Fleisher, DDS

	Nurses managing patients receiving BRONJ should monitor swelling, pain, signs of infection, neurological changes, and exposed bone to evaluate whether treatment should move beyond conservative management.

	When BRONJ progresses and requires surgical intervention, the first step is conservative debridement. Fleisher said advanced imaging is also valuable at this stage. If the disease continues to progress, other techniques Fleisher uses with advanced-stage BRONJ management include tetracycline-guided debridement, perioperative intravenous antibiotic therapy, hyperbaric oxygen therapy, and cone beam CT scanning.

	While BRONJ has been treated by discontinuing bisphosphonate treatment through “drug holidays,” Fleisher said evidence is lacking for this strategy.

Antiresorptive medicines used to reduce the loss of bone mass related to bone metastases or treatment toxicity are associated with an increased risk of ONJ.

Osteonecrosis of the Jaw Related to Antiresorptive Therapy

	Awareness and treatment of oncofertility have been given a tremendous boost over the past 5 years by the Oncofertility Consortium, a national interdisciplinary research network dedicated to fertility preservation and sparing for patients with cancer. Teresa K. Woodruff, PhD, the director of the Oncofertility Consortium, discussed oncofertility at NCONN 2011.

	Approximately 800,000 young women in the United States face reproductive issues related to cancer treatment, and 40,000 new cancer patients join this list every year, according to Woodruff, a Thomas J. Watkins Professor of Obstetrics & Gynecology at the Northwestern University Feinberg School of Medicine and professor of Biochemistry, Molecular Biology and Cell Biology in the Weinberg College of Arts and Sciences. Studies report that survivors with fertility issues experience increased depression, anxiety, and stress.

	To help these patients, Woodruff said the Oncofertility Consortium seeks to increase overall awareness of reproductive issues related to cancer treatment, gather data to determine the risk of sterility and early menopause for young women, and facilitate the delivery of existing and emerging reproductive treatment technologies to the patients who need them. The Consortium, which is headquartered at Northwestern University, provides >2700 oncofertility consultations each year.

	Oncofertility intervention should take place at diagnosis, or even earlier if genetic screening reveals patients are at risk for certain cancers, Woodruff said. Early intervention is crucial because fertility preservation often involves procedures that take place before cancer treatment begins.

		The Oncofertility presentation brought forth a mission and message of hope in helping some of our current cancer patients and survivors achieve their lifetime goal of having a family. The message was powerful and encouraging for those of us who are caregivers of adolescents and young adults who seek guidance about their fertility options.

		As medical professionals in the oncology field, we aspire to guide our patients and their families through these difficult conversations with a sense of hope and accuracy.

		Teresa K. Woodruff, PhD, offered insight into cutting-edge research and basic science breakthroughs in follicle growth and egg preservation.

		The conversations surrounding reimbursement of these procedures were very helpful in guiding our patients with concerns of the cost of such technology and provided potential financial resources for their oncofertility options.

		We also gained insight into multiple websites and an iPhone application that are excellent resources for our patients and their families in guiding them through the process and gaining up-to-date information about current practices and research.

		This presentation will undoubtedly impact our current practice and ignite a sense of urgency in supporting programs and research by the Oncofertility Consortium and other related fertility preservation initiatives.

	Woodruff also noted the importance of informing patients that fertility issues can develop long after treatment ends. Some women are not immediately sterile following treatment, and can even experience the return of a somewhat normal menstrual cycle. However, cancer treatments can cause menopause to start 5 to 10 years earlier than in the average healthy woman. Survivors who think they are in the clear after treatment could eventually become sterile.

	At NCONN 2011, Woodruff highlighted several oncofertility options:

	Embryo banking involves the freezing of fertilized eggs for future use. Prior to cancer treatment, a woman receives hormone injections to increase egg production. Through in vitro fertilization, the eggs are then removed and combined with the partner’s or donor’s sperm in a laboratory dish. After fertilization, the embryos are frozen until they are used to impregnate the woman.

	With egg banking, the eggs are extracted and frozen instead of fertilized. They are then thawed and fertilized at a later date. Success rates for pregnancy are lower with egg banking than with embryo banking.

	Ovarian tissue cryopreservation provides an option for patients who are too young or who are not candidates for embryo or egg banking, or do not want to receive the hormone treatments required for the banking process. The procedure involves removal of a woman’s ovary prior to receiving chemotherapy and/or radiation. Ovarian tissue is then frozen and can later be implanted back into the patient through an ovarian tissue transplant. Pregnancies have resulted from this method.

	The Oncofertility Consortium is also working on isolating follicles and enclosed eggs from the ovarian tissue, and fertilizing the eggs in vitro. The procedure has been used to impregnate mice but has not yet been successful in humans.

Exclusive Interview With Teresa K. Woodruff, PhD

	Woodruff said insurers are often hesitant to reimburse women for oncofertility care because of a lack of clinical data. The Oncofertility Consortium is working to produce the data, and in the meantime is advocating for patients. “We are sending the information to these insurers, and hopefully we’ll get reimbursed for many of these costs,” Woodruff said.

	The Oncofertility Consortium offers a patient website at MyOncofertility.org. Its main website (oncofertility. northwestern.edu) has resources for both oncology patients and oncology professionals. Other resources include the National Fertility Hotline at (866) 708-3378 and the iSaveFertility iPhone app, which provides a quick reference guide to fertility preservation.

Awareness and treatment of oncofertility have been given a tremendous boost over the past 5 years by the Oncofertility Consortium.

Oncofertility: Updates on Fertility Preservation Related to Cancer Care

	From initial screening and diagnosis to reconstructive surgery and survivorship, breast cancer patients have many options when it comes to their care. However, navigating the system can be complex, and as a result, patients may not be receiving the best possible care available to them. For example, in a recent study by Alderman et al,

 70% of general surgeons did not discuss reconstructive surgery options with breast cancer patients.

	“I think we need to raise the bar,” said Beth Baughman DuPree, MD, FACS, medical director of the breast health program at Holy Redeemer Hospital in Pennsylvania.

	At NCONN 2011, DuPree spoke to oncology nurses about prevention, detection, diagnosis, treatment, and survivorship pertaining to breast cancer patients and how much the field has changed based on clinical trials and an increased knowledge base. “I want our nurses who are in the forefront of this cancer process to be able to help educate their patients on what their choices are all along the way,” said DuPree.

	To emphasize her point, DuPree noted that many surgeons nationwide still use radical breast surgeries similar to those developed by William Stewart Halsted in the late nineteenth century, physically disfiguring patients for life while not guaranteeing a complete disease remission. She said that surgeries have become far less invasive and reconstructive surgeries—from nipple-sparing mastectomies to silicone implants&mdash; have drastically improved a patient’s self-image after treatment.

		TABLE 1. Survival Outcomes of the Z11 Study

	ALND indicates axillary lymph node dissection; DFS, disease-free survival; HR, hazard ratio; OS, overall survival; SLND, sentinel lymph node dissection. [Adapted from Giuliano et al. 

	Z11 Trial: Some Patients Need Less Surgery

	DuPree said that performing more surgery might not always be the best option for the patient, as clinical trials are starting to reveal. She pointed to the Z11 study,

 in which the survival of patients with 1 or 2 cancerous sentinel lymph nodes was not affected by whether or not they had a sentinel lymph node dissection alone or axillary lymph node dissection (

	In the Zll trial, “Less surgery did not cause less survival,” DuPree said. However, DuPree added that this only applied to patients who had been tested mammographically, ultrasonographically, and had palpably negative axilla. “We really need to make sure we are putting the appropriate patients into that subgroup [of patients who do not require axillary lymph node dissection].”

		One of the highlights of the NCONN conference was Dr DuPree’s breast care update. She covered topics from the history of breast care, to where we are today and important studies/trials that have influenced today’s breast care. She then went into specifics on prevention, screening, genetic risk assessment, and surgical intervention. She wrapped up her talk by explaining the recent paradigm shift in breast care and outlining how that shift allows for early detection, better screening tools, and minimally invasive diagnostic biopsies, just to name a few of her points.

		I am not a specific breast care nurse navigator, but I am a general oncology nurse navigator so I do work with breast patients as part of my practice. It was very beneficial to have Dr DuPree present such a thorough and comprehensive update on breast care. For me it was an opportunity to learn a lot at once and not have to go back and put different pieces of the puzzle together—very valuable for a navigator who navigates many different disease types.

	DuPree also provided an update on diagnostic techniques. After the United States Preventive Services Task Force made a controversial recommendation that women aged 40 to 49 years not receive regular mammograms, additional studies have actually confirmed the effectiveness of screening at these early ages. DuPree said that women should consider getting an annual mammogram performed starting at age 40.

	MRIs offer an additional screening option for women who are BRCA1 or BRCA2 positive, have a history of atypical ductal hyperplasia or lobular carcinoma in situ, have a personal history with breast cancer, or have a family history of breast cancer with >20% risk of developing the disease.

	DuPree also explained newer diagnostic techniques that utilize advances in stereotactic imaging, including MRI-assisted and ultrasoundguided biopsies. The ultrasound-guided biopsies provide images in real time and are minimally invasive without exposing the patient to radiation. MRI-guided biopsies are able to rule out multifocal disease, as well as evaluate the extent of the disease. Positron emission mammography is also being explored as a highly sensitive test that may eventually be used for breast cancer screening.

	DuPree also discussed the benefits of an integrative approach for both cancer prevention and an improved quality of life during survivorship. She described several studies that have suggested the anti-cancer benefits of a high-fiber, low-fat diet; anti-cancer foods, such as certain spices, mushrooms, vegetables, and chocolate; and omega-3 fatty acids.

	Regarding survivorship, DuPree said services such as massages and spiritual counseling can help turn “survivors” into “thrivers.” She described “thrivorship” as “When cancer’s not the first and last thing you think about every morning and when you find positives in your life after the cancer, and you’re living your life, and you’re living in the moment, that’s when you’re thriving, because you’re no longer defined by your cancer experience.”

			Alderman AK, Hawley ST, Waljee J, et al. Understanding the impact of breast reconstruction on the surgical decision-making process for breast cancer. 

			Giuliano AE, Hunt KK, Ballman KV, et al. Axillary dissection vs no axillary dissection in women with invasive breast cancer and sentinel node metastasis: a randomized clinical trial. 

Beth Baughman DuPree, MD, FACS, discussed the latest in breast cancer care at the 3rd Annual NCONN Conference.

Breast Cancer Treatment Update

	At NCONN 2011, Sean Grimm, MD, discussed the management of Glioblastoma multiforme, the most common malignant primary brain tumor. Approximately 4000 patients in the Unites States are diagnosed with glioblastoma each year, according to Grimm, an assistant professor of Neurology in the Feinberg School of Medicine at Northwestern University. The median age at diagnosis is 65 years, and median survival with treatment is 9 to 14 months.

	There are only 2 main risk factors for glioblastoma: extremely rare genetically inherited syndromes, including Li-Fraumeni syndrome and Turcot’s syndrome, and exposure to ionizing radiation. Grimm said that although the World Health Organization recently raised the risk of cell phones to being a “possible” cause of brain tumors, the data are still “inconclusive at this point.”

	Glioblastoma patients usually present with increased intracranial pressure and/or focal neurologic symptoms. Some patients also have seizures. Specifi c symptoms can include headache, personality change, weakness, sensory symptoms, gait ataxia, and language dysfunction.

	Glioblastoma treatment begins with surgery with the goal of maximal resection, said Grimm. He added that within 48 hours after surgery, an MRI should be done to find any residual tumor cells.

		Glioblastoma multiforme is a devastating disease that has a signifi cant negative impact on the patient and his or her family. Patients diagnosed with glioblastoma multiforme experience a rapid onset of symptoms resulting in severe and marked disability. Headache, memory loss, severe cognitive changes, mobility and language defi cits, nausea, vomiting, blurry vision, impaired decision making, and personality changes are some of the common problems experienced by the patient diagnosed with glioblastoma multiforme.

		The oncology nursing team plays a crucial role in identifying opportunities for intervention, education, counseling, and referral, in order to achieve the best possible outcomes for each glioblastoma patient. Quality of life in this patient population can be improved substantially if side effects and disease symptoms are managed through a well-coordinated plan of care and open communication between all involved parties.

		Implications for nursing practice include, but are not limited to, communication of pertinent information in a clear and concise way, and coordination of medical, emotional, and social support. Good nursing practice also encourages the patient to ask questions about all aspects of the treatment plan, and elicits the patients’ input when it comes to preferences and values.

		American Brain Tumor Association. Facts and statistics, 2010. 

		Bachuss CA. Nursing management of glioblastoma multiforme. Topics in Advanced Practice Nursing. 2008;8(4). 

. Published December 17, 2008. Accessed October 28, 2011.

		Henriksson R, Asklund T, Poulsen HS. Impact of therapy on quality of life, neurocognitive function and their correlates in glioblastoma multiforme: a review. 

	Following surgery, the standard of care is radiation therapy, which is typically administered 5 days per week for 6 weeks. Grimm said that studies have not demonstrated a clinical benefit to using radiation doses above the current standard of care, or treating patients with gamma knife or other forms of stereotactic radiosurgery.

	Temozolomide chemotherapy, which has become the standard of care, is typically given both during and after radiation therapy. Stupp et al demonstrated that 1 in every 10 patients treated with radiotherapy plus temozolomide is alive at 5 years, according to Grimm. Further, the data reveal that temozolomide does not have a negative impact on quality of life (QOL).

	The RTOG 0525 phase III trial demonstrated that increasing the dose of temozolomide above the current standard does not increase its effi cacy. The study did confi rm, however, that the enzyme O6-methylguanine-DNA methyltransferase (MGMT) is a good prognostic marker for survival in glioblastoma patients treated with temozolomide.

	If glioblastoma progresses after initial treatment, monotherapy with bevacizumab (Avastin) is FDA-approved as salvage therapy.

	Grimm noted that lesions on imaging following radiation and chemotherapy might appear to have worsened, even though the glioblastoma has not actually progressed. The phenomenon, known as pseudoprogression, occurs in approximately 25% of patients receiving temozolomide chemoradiotherapy. “The lesions are often asymptomatic and may decrease or stabilize in size without a change in treatment,” said Grimm. He added that pseudoprogression might even be a positive prognostic factor indicating which patients respond best to temozolomide.

	There is no reliable noninvasive option to differentiate between pseudoprogression and actual progression. Grimm said that until imaging parameters become more reliable, adjuvant temozolomide should be continued in asymptomatic patients whose imaging indicates progression, and surgery should be considered for patients with symptoms.

	Improving survival is just part of the goal in managing patients with primary brain tumors. “We know that radiation and chemotherapy may improve duration of survival, but we need to balance this against toxicity and side effects of these agents,” said Grimm.

	The side effects of glioblastoma and its treatment include aphasia, hemiparesis, seizures, and visual loss. Supportive care treatments for side-effect management include antiepileptic medications and steroids.

	Grimm said that nurses are crucial to side-effect management because patients are wary about discussing QOL issues with their doctors. “Patients are often scared to tell the physician about the negative effects on their quality of life. They’re afraid that if they tell me some of these things, that I’m going to stop their treatment.”

	Stupp R, Hegi ME, Mason WP, et al. Effects of radiotherapy with concomitant and adjuvant temozolomide versus radiotherapy alone on survival in glioblastoma in a randomised phase III study: 5-year analysis of the EORTC-NCIC trial.

At NCONN 2011, Sean Grimm, MD, discussed the management of Glioblastoma multiforme, the most common malignant primary brain tumor.

Clinical Management of Primary Brain Tumors

	The National Coalition of Oncology Nurse Navigators (NCONN) held its 3rd Annual Conference, Changing the Face of Cancer Care, from September 8-10 in San Diego, California. The conference began with a welcome address from Harold P. Freeman, MD, FACS, who founded patient navigation in Harlem, New York, in 1990.

	Freeman has served as president of the American Cancer Society and met 5 US presidents, including 3 whose cancer panels he chaired. He is now the president and founder of the Ralph Lauren Center for Cancer Care and Prevention in New York City, which includes the Harold P. Freeman Patient Navigation Institute. He is an NCONN board adviser and has said of the organization that it “ensures expertise in the field of oncology nurse navigation.”

 sat down with Freeman at NCONN 2011 and discussed the current and future status of patient navigation. Our conference coverage begins with highlights from our discussion with Freeman and continues with clinical insights from the conference presentations.

	Guiding Patients Across the Cancer Continuum

	As a surgeon in Harlem in 1990, Freeman was frequently seeing patients with late-stage cancer. He founded patient navigation to eliminate barriers to timely treatment and diagnosis, ensuring that patients with cancer are treated at earlier stages. “Individuals need to be navigated to get the screening tests and once there is a finding, to [get a] diagnosis. Many individuals have abnormal findings on [screening tests such as a] mammogram, but then are lost in the system.”

	While the initial focus of patient navigation was primarily on eliminating hurdles to prevention, diagnosis, and treatment, its function has evolved to also include guiding patients through the entire healthcare continuum. Accordingly, Freeman said navigation is moving oncology nursing beyond specialization.

	“Fundamentally the function of navigation is to concentrate on the patient’s needs, no matter what they are, and to get away from specialization,” said Freeman. “Whereas formerly nurses were assigned to specific services, such as a nurse working in chemotherapy or a nurse working in radiation treatment, the nurse navigation concept has driven a change in that now we see nurses working [with a single patient] across the treatment continuum.”

	All Cancer Patients Today Need Navigators

	Freeman started patient navigation to improve cancer care for the medically underserved community, a population that experiences disproportionately high rates of cancer mortality. He believes, however, that all patients with cancer need and should receive navigation.

	“Any patient with a serious disease, such as cancer, needs to be navigated. It doesn’t matter how much money you have or whether you have insurance or not—people diagnosed with cancer get lost in the system.”

	Still, Freeman said that navigation cannot abandon its roots and must retain its commitment to the medically underserved. “Anyone with cancer needs to be navigated, but the people who need navigation the most are those that don’t have resources, don’t have knowledge, and don’t have insurance.”

	Freeman said the use of patient navigation is widespread and that it is rapidly growing. “My unscientific estimate is more than 2000 medical centers in America now have navigation programs at this point, and it’s growing exponentially.”

	He added that starting in 2012, receiving accreditation from the Commission on Cancer (CoC) of the American College of Surgeons will require that facilities have patient navigation programs. CoC certification is highly coveted by cancer care centers, so Freeman projects the new requirement will lead to tremendous growth in patient navigation.

	The Sustainability of Patient Navigation

	Freeman said that while there is no doubt that patient navigation improves the quality of patient care, its sustainability within the healthcare system hinges on its economic viability. “The fundamental question for the survival and expansion of navigation in the future will be the question of whether it’s cost effective. There is no question that patients are more satisfied when they have navigators.”

	Early tests have supported the cost effectiveness of patient navigation, according to Freeman, but he said additional data are needed. Some of the demonstrated cost savings facilitated through patient navigation include decreasing no-show rates and reducing the number of repeated tests through greater coordination within and between medical facilities. Freeman said the ultimate test of cost effectiveness, however, is a measure that will take time to demonstrate: showing that patient navigation leads to increased prevention and earlier diagnosis.

	All patients, regardless of their insurance coverage, will be treated if they present at late-stage diagnosis (hospitals cannot legally refuse treatment), explained Freeman. Treatment at these later phases is generally more expensive with more involved procedures and greater pain and symptom management. Therefore, Freeman suggested that data showing that patient navigation increases the rate of prevention and early diagnosis would prove that it reduces the overall cost of healthcare by shifting care away from expensive late-stage treatment. Obtaining these results “will take time, but [they’re] on the way,” noted Freeman.

The National Coalition of Oncology Nurse Navigators (NCONN) held its 3rd Annual Conference, Changing the Face of Cancer Care, from September 8-10 in San Diego, California.

3rd Annual NCONN Conference: Including insights from Harold P. Freeman, MD, FACS, the founder of patient navigation

	Founded in 2009, Lynch Syndrome International (LSI) filled a tremendous void in the arena of hereditary cancers by providing networking, organization, and a voice that was greatly needed by those affected with Lynch syndrome (LS), a genetic condition. In 2008, when founder Linda Bruzzone was diagnosed after sustaining late-stage colon cancer, internet information on LS was fragmented and decentralized. “I felt so alone. Nowhere could I find others online. It was frightening, as though we didn’t exist. Nowhere was there a support system for those with Lynch syndrome.” Today, LSI support is available at 

. A hub of activity, the website provides public awareness, support, and education to tens of thousands of individuals globally.

	Having no gender, ethnic, or cultural preferences, the extremely aggressive tumors of Lynch syndrome target families, predisposing them to a high risk of cancer at a younger-than-average age. Children of those affected possess a 50% risk of acquiring LS. Those diagnosed face up to an 85% lifetime risk of colon cancer. A 65% risk of contracting endometrial cancers exists for women and higher-than-average risks exist for contracting other cancers including those affecting the stomach, pancreas, kidney/ureter tract, hepatobiliary tract, gastric tract, prostate, ovaries, gall bladder, brain, small intestine, and the skin. If that isn’t enough, it is not unusual for those with LS to contract more than one primary cancer in their lifetime.

	Support for those affected, education of medical professionals and the public, assistance for research endeavors, and public awareness are key missions of LSI. According to Johns Hopkins, only 5% of the 600,000 at risk in the United States are diagnosed. The rest are left vulnerable to cancers that continue through generations—with family members dying young of an often devastating death.

	However, hope lives and overpowers the never-ending sense of uncertainty for those living with LS through diagnosis via genetic testing. Annual screenings for cancers are then prescribed, and polyps and tumors are often detected early and removed or treated before becoming life-threatening.

	LSI launched its comprehensive website in March 2009. The site addresses the many questions posed by those affected by LS, including medical information, basic tips on cancer survival and care, and even an online library with up-to-date studies on LS.

	Social networking is facilitated through Facebook and Twitter. For the affected youngsters, a site was recently introduced on Tumblr. These sites provide a place for survivors, “previvors,” and others to interface with one another and share experiences in how they positively manage their lives. Knowledge and involvement with LS advocacy, coupled with interaction with others who are thriving, often creates empowerment.

	Numerous resources are accessible online or by phone, where live 24-hour support is also available. Finally, a “buddy-to-buddy” program is available by email, providing the opportunity to interact anonymously with someone with LS.

		In this family, 6 of the 9 adults pictured have Lynch syndrome.

	Grassroots public awareness efforts occur within the international community through LSI’s many volunteers. In 2010, during the Governors’ Initiative, 12 US governors declared Lynch Syndrome Public Awareness Day in their respective states. The effort is expected to be much larger this year. In the past 2 years, LSI has met with hundreds of state and federal legislators. Tens of thousands of awareness brochures and “Embrace Life” bracelets have been distributed to the general public. Volunteers actively work at “Relay for Life” events and are interviewed by local newspapers as well as radio and television shows. Globally, hundreds are blogging about their experiences.

	LSI provides outreach to medical professionals, in person, by mail, phone, and through exhibiting at medical conferences. It offers complimentary speaking services to organizations and institutions. Additionally, LSI’s Website provides essential diagnosis and management information for medical professionals.

	Currently, LSI assists in recruiting subjects for clinical trials. A portion of donations is dedicated to research endeavors.

	The success of LSI can only be defined by the commitment of the volunteers and measured by the assessment of the persons they serve:

“When I first saw your website, I broke into tears. I felt alone and different. Now I know there’s hope and I am one of the lucky ones. Thank you for being a beacon.”

	LSI reassures individuals that options exist, and that for those with LSI, it is no longer necessary to live with insurmountable uncertainty, as hope is alive.

Advocacy Spotlight

Lynch Syndrome International (LSI) fills a tremendous void in the arena of hereditary cancers by providing networking, organization, and a voice.

Lynch Syndrome International

 On March 20, 2008, the FDA approved bendamustine hydrochloride (Treanda), an intravenously (IV) administered alkylating agent, for the treatment of patients with chronic lymphocytic leukemia (CLL). The recommended dose of bendamustine for CLL treatment is 100 mg/m

 administered IV over 30 minutes on days 1 and 2 of a 28-day cycle, up to 6 cycles.

	On October 31, 2008, the FDA approved bendamustine for the treatment of patients with indolent B-cell non-Hodgkin lymphoma (NHL) that progressed during or within 6 months of treatment with rituximab or a rituximab-containing treatment regimen. For patients with indolent NHL, bendamustine is administered as a 60-minute IV infusion on days 1 and 2 of a 21-day cycle for up to 8 cycles. The recommended dose is 120 mg/m

	A patient’s dose of bendamustine is placed in a 500-mL infusion bag of 0.9% Sodium Chloride Injection, USP (normal saline). As an alternative to normal saline, a 500 mL infusion bag of 2.5% Dextrose/0.45% Sodium Chloride Injection, USP, may be considered. The resulting final concentration of bendamustine in the infusion bag should be within 0.2-0.6 mg/mL.

	Although the exact mechanism of action of bendamustine is unknown, it is a bifunctional mechlorethamine derivative that contains a purine-like benzimidazole ring. Mechlorethamine and its derivatives form electrophilic alkyl groups, and these groups form covalent bonds with electron-rich nucleophilic moieties, resulting in interstrand DNA crosslinks. This bifunctional covalent linkage can lead to cell death via several pathways; therefore, bendamustine is active against both dividing and resting cells.

	Bendamustine prescribing information (PI) does not classify the drug as an irritant or vesicant and instructs clinicians to take precautions to avoid extravasation, including monitoring the intravenous infusion site during and after administration. The PI states that the manufacturer has received postmarketing reports of bendamustine extravasations that caused pain, erythema, and swelling and necessitated patient hospitalization. Precautions should be taken to avoid extravasation, including monitoring of the intravenous infusion site for redness, swelling, pain, infection, and necrosis during and after administration.

	Because of bendamustine’s potential to cause pain and erythema to the extent that hospitalization has been required for some patients, it would be prudent to administer bendamustine using vesicant precautions. ”

	In personal communication with the manufacturer on October 21, 2011, the manufacturer stated that limited data on bendamustine extravasation are available in the literature. A local tolerance study in an animal model indicated that bendamustine has the potential to produce irritation to the vein and surrounding tissue at concentrations of 0.2, 0.6, and 1.0 mg/mL. The manufacturer noted that when bendamustine is reconstituted and prepared as directed in the PI, it does not appear to be a vesicant but appears to be a local irritant upon infiltration into the tissue. In the event of an infiltration of bendamustine, immediate action should be taken to discontinue the infusion and remove the IV catheter (or non-coring needle from an implanted port). According to the manufacturer, there are no specific antidotes or treatment recommendations for bendamustine infiltration.

	Because of bendamustine’s potential to cause pain and erythema to the extent that hospitalization has been required for some patients, it would be prudent to administer bendamustine using vesicant precautions (eg, use a new IV site in a large vein in the forearm, avoid using an IV infusion pump, and monitor the IV site and verify blood return every 5 to 10 minutes). Patients receiving bendamustine should be instructed to immediately report any change in sensation at the IV site, and report any unusual tugging or pulling on the IV tubing, which increase the risk of IV device or noncoring needle dislodgment.

	If you have a clinical question for which evidence is lacking or controversial that you would like our experts to address, please submit it to 

What would you do

Because of bendamustine's potential to cause pain and erythema to the extent that hospitalization has been required for some patients, it would be prudent to administer bendamustine using vesicant precautions.

What is the best way to administer bendamustine, since some clinicians classify it as an irritant and others classify it as a vesicant?

Executive Director, President, and Co-founder

National Coalition of Oncology Nurse Navigators

	One of the central themes of the 3rd Annual NCONN Conference was navigating young adults with cancer. Young adults facing a cancer diagnosis have unique needs and barriers to care and survivorship that can present a difficult challenge to oncology nurse navigators (ONNs) tasked with guiding them through the cancer care continuum.

	There are more than 72,000 adolescents and young adults aged 15-39 years who are diagnosed with cancer each year.

 Cancer in young adults is often detected late, and once diagnosed, these patients frequently receive inconsistent treatment and follow-up care.

	The needs of young adults with cancer have been ignored historically, leaving these patients feeling neglected and ignored. In the adolescent and young adult (AYA) population, the 5-year survival rate has stayed constant at about 70% over the last 30 years.

 In the past 25 years, the AYA population has seen increased survivorship in only 8 of the 20 most commonly diagnosed cancers. ONNs navigating individuals in this age group require an additional library of resources and a comprehensive understanding of AYA needs. Insurance issues, isolation, and quality-of-life concerns are the top-3 factors to consider when navigating an AYA patient.

	ONNs know that when navigating patients, regardless of their age, challenges related to insurance coverage can arise. A child is most likely covered under his or her parents’ health plan, and if not, many states offer low-cost affordable insurance. Older adults often have insurance through their jobs, or through Medicaid or Medicare. AYAs, however, present a greater challenge because many do not have insurance or have aged out of their parents’ plan.

	Nearly 21% of the uninsured are aged <18 years, and 63% are aged <34 years. Thus, AYAs are disproportionately uninsured relative to the overall population.

	Working AYA patients may have elected not to insure themselves to avoid a decrease in their net take-home pay, or from a belief that insurance is unnecessary for younger individuals because they generally face fewer health problems.

	Finding resources to cover AYA patients’ medical costs starts with an assessment. Is this patient eligible for a state program that is in existence for the uninsured? Is this patient unaware that he or she is actually still insured under his or her parents’ plan?

	Navigators treating AYA patients who have insurance, employment, or other legal issues related to their cancer should consider referring their patients to the Cancer Legal Resource Center (CLRC). The CLRC provides a national, toll-free helpline (866-THE-CLRC), offering callers confidential information about relevant laws and resources for their particular issues, with available services including advice from attorneys, insurance agents, and accountants.

	AYAs often receive lower levels of social support than other patients with cancer. A person aged 34 years who is diagnosed with cancer is not young enough to get the sympathy/support that a child with cancer receives. Additionally, AYAs are often ineligible for the magnitude of services available to the over-50 crowd, which have been established to assist in the normal aging process.

	Thus, ONNs must often help AYAs obtain the social support they need, which can be highly challenging. Patients in the 15-39 age range are at the prime of their life, and the average age of the ONN is 52. These 2 age groups have uniquely different perspectives regarding life. Navigators are thus faced with finding resources outside of their own demographics and, perhaps, comfort zone.

	Fear of recurrence, latent treatment effects, financial problems, employment issues, fertility problems, changes in physical appearance, poor self-image, and dating are just a few of AYAs’ potential concerns. ”

	Again, assessment becomes critical when navigating the AYA. What resources are age-appropriate? Does your facility offer programs specifically designed for the AYA?

	One crucial resource for ONNs is the I’m Too Young For This! Cancer Foundation (i[2]y, stupidcancer.com), which offers a wealth of resources and information for AYAs. i[2]y offers local happy hours, tweetups, retreats, financial scholarships, peer groups, fertility advocacy, legal assistance, relationship workshops, and an annual young adult cancer conference. The organization’s website is a one-stop resource and is essential to the ONN navigating the AYA.

	When navigating AYA patients during their transition from active treatment to survivorship, ONNs need to consider several quality of life issues. Fear of recurrence, latent treatment effects, financial problems, employment issues, fertility problems, changes in physical appearance, poor self-image, and dating are just a few of AYAs’ potential concerns.

	ONNs must recognize that survivorship starts at diagnosis. Assessment of what is important to the AYA should be done when a treatment plan is being formulated at the AYA’s initial visit. This will help ensure the best possible quality of life for the AYA during survivorship.

			Adolescents and young adults with cancer: survivorship. National Cancer Institute at the National Institutes of Health.

 cancer.gov/cancertopics/aya/survivorship

			US Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation. Overview of the uninsured in the United States: an analysis of the 2005 current population survey. 

aspe.hhs.gov/ health/reports/05/uninsured-cps/ib.pdf

. Published September 22, 2005. Accessed November 7, 2011.

Nurse Navigators

Young adults facing a cancer diagnosis have unique needs and barriers to care and survivorship that can present a difficult challenge to ONNs.

Assessment Comes First in Navigating Young Adults With Cancer

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

 Oncology Nursing Consultant, Adjunct Assistant Professor of Nursing

		Louisiana State Health Sciences Center in New Orleans, Louisiana

 features coverage of the National Coalition of Oncology Nurse Navigators (NCONN) 3rd Annual 

 Conference. The emergence and success of NCONN is a testament to the rapid growth of nurse navigation as a subspecialty of oncology nursing. As an introduction to our NCONN coverage, here is some background information on nurse navigation, with an emphasis on the important role all nurses can play in navigating patients across the cancer care continuum.

	Harold P. Freeman, MD, FACS, founded patient navigation in Harlem, New York, in 1990. As a breast cancer surgeon, he was regularly seeing patients with late-stage cancer who had severely limited treatment options. His orginal focus for patient navigation was to increase the rates of early screening and diagnosis to ensure patients were presenting at earlier stages, when the options for improving survival and quality of life are far greater. In the decades since Freeman originated the concept, navigation has evolved to increasingly focus on guiding patients through the entire cancer care continuum.

	NCONN now defines the oncology nurse navigator (ONN) as “a professional whose clinical nursing expertise guides patients, families, and their caregivers to informed decision-making, collaborating with a multidisciplinary team to allow for timely cancer screening, diagnosis, treatment, and increased supportive care across the cancer continuum.” ONNs either guide a general population of patients with cancer, or guide a subpopulation of patients (eg, breast care navigators).

	Navigation programs in healthcare facilities are proliferating. However, there is considerable variability in their scope and implementation. Navigation programs are informal in some facilities, while in others they are specialized and have dedicated staff. The Commission on Cancer (CoC) of the American College of Surgeons notes that the variability in navigation services offered at a particular facility can depend on the type, severity, and complexity of identified barriers to accessing cancer care. Examples of frequently encountered barriers that have the potential to be reduced or eliminated through patient navigation include financial barriers, communication barriers, fragmented care, and emotional distress.

	The CoC is in the process of phasing in standard 3.1, the Patient Navigation Process, as a component of its accreditation standards (the standard is to be fully implemented by 2015). The standard requires that accredited centers have navigation programs. Specifically, “A patient navigation process, driven by a community needs assessment, is established to address health care disparities and barriers to care for patients. Resources to address identified barriers may be provided either on-site or by referral to community-based or national organizations.”

	A seamless journey is certainly a better outcome than a rocky road of care, and all nurses can promote a seamless journey. ”

Navigation programs in healthcare facilities are proliferating. However, there is considerable variability in their scope and implementation. 

November 2011