Volume 15, Issue 2, August 2011
No Prima Donnas in the Bell Choir
Cancer Genetics SIG Works as a Team

Patricia Kelly, DNP, APRN, CNS, AOCN®
Dallas, TX

Every Wednesday evening I don a pair of white gloves and stand side-by-side with 12 fellow bell ringers as we practice music for church services. The bell choir, also known as the “ding-a-ling choir,” could be called a musical team sport. The bell ringers play beautiful music by reading the score, counting the rhythm, sharing bells, and watching the conductor. Occasionally, a bell player will be in crisis and turn two pages at once or skip a measure. As a team, we adjust and help each other find our places. We practice and learn new bell ringing techniques from each other and the conductor. The bell choir often plays music without additional accompaniment, but sometimes, the sounds of a violin, flute, or organ add depth and interest to the music. No prima donnas exist in the bell choir—no soloists. We are volunteers; we ring as a team. And as a team, we make beautiful music.

As I reflect upon our SIG, I am reminded how the ONS Cancer Genetics SIG is similar to the bell choir. We represent nurses who have an interest and passion for genetics and genomics and stand together to advance our specialty. We lift each other up when a member is in crisis, and we learn from each other through sharing case studies and resources. We collaborate with other disciplines to add interest and depth to our work.

The following is a sampling of the Cancer Genetics SIG team in action.

  • Cancer Genetics SIG Congress Poster: SIG member Jennifer T. Loud, RN, CRNP, DNP,volunteered to design the SIG Congress poster, and clinical trial nurses SIG member Liz Ness, RN, MS, transported and mounted the poster. It was one of the best Congress SIG posters (and I am not biased).
  • SIG Meeting: SIG Coordinator-Elect Jacqueline Hale, RN, APN-C, AOCN®, and SIG member Susan Montgomery, BSN, RN, CGN, worked together to present interesting hereditary cancer case studies for the Congress continuing nursing education program. The presentation elicited lively discussions and audience participation from the 50 nurses attending the meeting. Many of these nurses were non-members who have an interest in genetics. View the Cancer Genetics SIG 2011 meeting minutes.
  • SIG-Sponsored Presentations: “Follow the Yellow Brick Road: Signaling Pathways and Targeted Therapies” (coordinated by SIG member Julie Eggert, PhD, APRN-BC, AOCN®) and “Screening the Risks of a High-Risk Genetics Program” (coordinated by SIG member Jacqueline Hale, RN, APN-C, AOCN®, and presented by SIG member Deborah MacDonald, PhD, MS, APNG) provide examples of SIG members working together, with other SIG members, and collaborating with the Breast Care SIG. I presented the session “Learning Genetics/Genomics through Stories and Case Studies.”
  • SIG Interprofessional Activities: SIG associate member Cristi Radford, MS, CGC, wrote “Hereditary Ovarian Cancer: Consider the Possibilities” as a cooperative initiative of the National Society of Genetic Counselors and the Cancer Genetics SIG. SIG member Millie Arnold, RN, BSN, OCN®, CCRC, created the pedigree for the article.
  • SIG Partnering: SIG members Catherine Belt, MSN, RN, AOCN®, and Laura Beamer, DNP, CNP, CNS, AOCNP®, AOCNS®, (Ethics SIG coordinator) co-authored “Cancer Genetics and Ethics: Should Unaffected Children Be Tested for Adult Onset Genetic Conditions?” for the May 2011 Ethics SIG newsletter. This article also is featured in the current Cancer Genetics SIG newsletter.
  • SIG Newsletter: SIG members Rose Bell, ARNP-C, MSN, OCN®, and Robin Stevens, ARNP, OCN®, volunteered to be co-editors. Contact Rose rosebl3@aol.com and Robin robin.stevens@pbcancer.com to share your newsletter ideas.
  • Special Projects: SIG member Julie Eggert, PhD, APRN-BC, AOCN®, provided consultation for the NCHPEG/ONS draft proposal.
  • SIG Leadership and Mentorship: SIG Ex-Officio Lisa Aiello-Laws, RN, MSN, AOCNS®, volunteers as Web Administrator and mentors me as I navigate the coordinator role.

In the bell choir, we often end our music by shaking our bells in unison. It is a wonderful sound–a great ending. For 2011-2012, let’s continue to work as a team and shake our bells in unison remembering that we have many genetic compositions left to play.

I welcome feedback and response to this “Coordinator’s Message.” Feel free to send me an e-mail. To share additional thoughts, comments, resources, and analogies, please go to the Cancer Genetics SIG Virtual Community discussion board.

The Cancer Genetics SIG Newsletter is produced by members of the
Cancer Genetics SIG and ONS staff and is not a peer-reviewed publication.

Special Interest Group Newsletter  August 2011

Hereditary Cancer Syndromes
A Case Study of Collaborative Care

Jacqueline Hale, RN, APN-C, AOCN®
Flemington, NJ

I presented twice at the 2011 ONS Congress, an educational session, “Screening the Risks of a High-Risk Genetics Program,” and “Interesting Hereditary Cancer Syndrome Cases” at the Cancer Genetics SIG meeting. Experience is a wonderful teacher, and we all have so much to share. I shared information about two areas of my passion, family-focused oncology care and collaboration among oncology nurses. The ONS position statement, The Role of the Oncology Nurse in Cancer Genetic Counseling, states that oncology nursing related to genetics includes three levels. The general oncology nurse is able to provide education and information to patients and families receiving their care and to use their education in genetics and genomics in the delivery of care. The advanced practice level nurse incorporates this preparation into the planning and management of cancer care as well as educating the patient and family. The advanced practice nurse with specialized training in cancer genetics and hereditary cancer predisposition syndromes uses the specialized training to identify risks and counsel patients (and families) about management, communication, use of genetic information, genetic testing, and individualized screening and prevention.

The following hereditary cancer syndrome case study is an interesting clinical presentation and is an example of an oncology nurse navigator, an advanced practice genetics nurse, and a genetic counselor working together to provide quality patient- and family-centered care.

The Case Study
Mr. S is a 50-year-old male who presented to a gastroenterologist for his first screening colonoscopy. Immediately after the examination, his spouse called the oncology nurse navigator (as instructed). Mrs. S reported, “He just had a screening colonoscopy, and they found hundreds of polyps. Dr. C. wants him seen by a surgeon and oncologist as soon as possible because they will probably have to take his colon out. We were told in the past that he may have Cowden’s syndrome, but the test they did back then was negative. There is a really big mass in his rectum that they think is cancer.” The oncology nurse navigator recognized red flags in this call (Cowden’s syndrome, polyps, possible malignant mass, and as soon as possible). She quickly facilitated appointments for a computed tomography (CT) scan of the abdomen and pelvis, as ordered by the gastroenterologist, and an appointment at the hereditary risk-assessment clinic. She contacted the risk-assessment clinic to review management of Cowden’s syndrome and the associated cancer risks to support her care navigation and to prepare the patient.
Following his CT scan, Mr. S and his wife arrived at the risk assessment clinic, stating, “They think he has spots in the liver, so the mass may be metastatic.” Their anxiety level was very high. As the advanced practice nurse with specialized training in cancer genetics, I took a history and performed an examination, with attention to findings that would help clarify the likelihood of a cancer predisposition syndrome. Mr. S reported a personal medical history of

  • Oral adenocarcinoma
  • Lhermitt-Duclos (LD) tumor of the brain (now recurring)
  • A lipoma
  • “Another mass” removed from his leg.

After identifying the LD tumor, his physician suspected Cowden’s syndrome, but germline testing at that time did not identify a mutation. The family members also had not received education or genetic counseling at the time of that test. They did keep the written report of results. Later, we were able to confirm that more comprehensive testing was now available.

Mr. S’s family history indicated the following.

  • Mother had bilateral breast cancer (in her 60s).
  • Mother had “lots of growths” removed from her skin and multiple moles.
  • Sister was diagnosed with uterine cancer in her 30s.
  • Father was diagnosed with prostate cancer.
  • Younger son has autism.

Mr. S also had a history of learning disability (reading) during early childhood. He relies on his spouse when he cannot easily comprehend written material. He reported that he had delayed speech. These learning disabilities never impacted his ability to work as an adult.

Physical Findings

  • Well nourished
  • Scattered facial papules, never biopsied, not confirmed as trichilemmomas
  • Keratoses on both hands and feet
  • Gingival hyperplasia
  • He reported that he has a pigmented penis.
  • Macrocephaly (62 cm)
  • Large hands and feet
  • Multiple hemangiomas on back and chest (greater than 75)
  • Oral cavity was elongated (AP) with very crooked teeth.
  • No lesions on the tongue or lips
  • Multiple skin tags in addition to the flesh-colored papules
  • Mild hand tremors with equal grip bilaterally
  • Thyroid was not visibly enlarged.

Differential Diagnoses

  • Cowden’s syndrome
  • Phosphatase and tensin homolog (PTEN) hamartoma tumor syndromes, Lhermitte-Duclos, Proteus syndrome, and Bannayan-Riley-Revulcaba syndrome
  • Peutz-Jeghers less likely

Genetic Testing and Results of Biopsy
We requested full sequencing of the PTEN gene (on chromosome 10), which identified a PTEN mutation. The large rectal polyp was a tubular adenoma. Thyroid studies revealed multinodular goiter and no carcinoma. A liver biopsy identified lymphangioma and hemangiomas with no carcinoma.

Follow Up

  • Mr. S was referred back to the nurse navigator for educational support and high-risk screening. She facilitated a referral to dermatology and provided all documentation to his primary physician.
  • Mr. S’s sons also were tested in our high-risk program.
  • We met with the staff of the residential facility where the son with autism lives to educate staff and plan to meet his screening needs.
  • Mr. S. joined a research registry and study.

In this case study, nurses provided patient and family education, care coordination, peer education, support for research, and screening recommendations. The oncology nurses had the opportunity to educate additional specialty nursing staff (family practice, ENT, dermatology, and gastroenterology). Emotional support for the family was immediate, and care and communication were seamless.

I have shared my passions. Please consider sharing your passions and case studies. (See co-editor information at the end of this newsletter.) Please post any comments or questions about this case study on the Cancer Genetics SIG discussion board.


Oncology Nursing Society. (2009). The role of the oncology nurse in cancer genetic counseling. Retrieved from http://www.ons.org/Publications/Positions/GeneticCounseling

Read more information about PTEN mutations and Cowden Syndrome.

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Special Interest Group Newsletter  August 2011

Cancer Genetics and Ethics
Should Unaffected Children Be Tested for Adult Onset Genetic Conditions?

Catherine Belt, MSN, RN, AOCN®
Hatfield, PA

Laura Beamer, DNP, CNP, CNS, AOCNP®, AOCNS®
Duarte, CA

This article originally appeared in the May 2011 issue of the Ethics SIG Newsletter.

Case Study
A gynecologic oncologist presented the following case at a tumor board.

A 43-year-old female presented with uterine cancer, was treated with total hysterectomy, and was now discussing adjuvant chemotherapy. (Limited information was presented during the tumor board regarding any additional history of cancer in the family.) The gynecologic oncologist tested the patient for germline mutations in the four mismatch repair (MMR) genes. The patient was found to have a mutation in the MSH2 MMR gene. At the patient’s request, the gynecologic oncologist ordered full sequence analysis of the four MMR genes in the patient’s 10-year-old son and 12-year-old daughter. The daughter was found to carry the same mutation in the MSH2 gene as previously identified in her mother. Next, the surgeon referred the mother and daughter to a local gastroenterologist with a request to perform colonoscopy for both the mother and her 12-year-old daughter. The screening colonoscopies were performed as requested.

A genetic counselor attending this tumor board questioned the gynecologic oncologist about the criteria used to determine the need for testing in this patient and her children. More specifically, were the National Comprehensive Cancer Network guidelines used to determine screening needs of the children? The gynecologic oncologist responded that the testing on children was performed based on the request of the mother.

Immunohistochemistry (IHC) and microsatellite instability testing was not performed on the patient's uterine cancer. Counseling by a genetic health expert was not provided to the patient or her children before or after the genetic testing. The extent of communication about the known family mutation to the patient's extended family is unknown.

Genetic Overview
Lynch syndrome (LS) is a genetic condition usually transmitted through an autosomal dominant pattern. Autosomal dominant means that a person only needs to inherit a mutated gene from one parent to be at risk for developing the disease. LS also is known as hereditary non-polyposis colorectal cancer (HNPCC). LS most frequently is associated with colorectal and endometrial cancer. It is also associated with glioblastoma multiforme, ovarian, ureter and renal pelvis, and other cancers. LS is caused by a mutation in a MMR gene (i.e., MLH1, MSH2, MSH6, PMS2). LS is diagnosed by finding a germline (AKA inherited) mutation in one of the MMR genes.

However, the tumors suspicious for LS can be tested using IHC testing on the tumor. IHC is a staining technique performed in most laboratories. We use it on breast cancer tumors to determine estrogen and progesterone receptor status. When used for a potential LS-associated cancer, IHC checks for the presence of protein products made by the MLH1, MSH2, MSH6, and PMS2 genes. If one of the protein products does not stain, we suspect that an inherited mutation is present in the gene that was supposed to make that protein product. We can use that information to order a more specific and cheaper diagnostic genetic test that is performed on a specimen of blood. IHC on a tumor costs about $400. Full sequence analysis of MLH1, MSH2, and MSH6 (on blood) costs a little over $3,000. When we have a suspect gene identified by IHC, sequencing can be ordered for that gene, costing just under $1,500. When we know the actual mutation in a family, a site-specific test can be ordered for the specific mutation, costing about $500.

In our case study, the genetic counselor felt concerned that the gynecologic oncologist did not use tumor testing to guide germline genetic testing for the mother. Also, the gynecologic oncologist did not use the genetic mutation information from the mother’s test to order a site-specific test for the daughter. (Many other ethical issues are described as follows.)

Ethical Analysis: Quick Overview of Ethical Principles
Autonomy: Freedom to make independent decisions
Beneficience: Do good; remove evil.
Nonmaleficence: Do no harm.
Justice: Fairness; receiving what is deserved (a fair share) or due
Fidelity: Remaining loyal and faithful
This case study will be reviewed using a modified version of the Ethical Assessment Framework created by Cassells, Jenkins, Lea, Calzone, and Johnson (2003).

Ethical Concern
Is it permissible to provide genetic testing for an adult-onset disorder in children?

Overview of the Facts
The 43-year-old mother is affected by a LS (AKA HNPCC) uterine cancer. The 12-year-old daughter and 10-year-old son currently are unaffected by cancer. The quantity and quality of genetic education about LS given to the mother and her children is unknown. No state and federal laws exist that govern this practice. Institutional policies have no power in a private medical practice.

Is This an Ethical Dilemma?
Providing genetic testing without adequate genetic education is an infringement of autonomy. Providing genetic testing for an adult-onset disease to children violates their future autonomy (Twomey, 2011).

What Do the Professional Guidelines Say?
American Academy of Pediatrics (AAP)—“Genetic testing for adult-onset conditions generally should be deferred until adulthood or until an adolescent interested in testing has developed mature decision-making capacities. The AAP believes that genetic testing of children and adolescents to predict late-onset disorders is inappropriate when the genetic information has not been shown to reduce morbidity and mortality through interventions initiated in childhood” (AAP, 2001, p. 1454).

American College of Gastroenterology—“Those patients with positive genetic testing, or those at risk when genetic testing is unsuccessful in an affected proband, should undergo colonoscopy every two years beginning at age 20–25 years, until age 40 years, then annually thereafter” (Rex et al., 2008, p. 4).

American Society of Clinical Oncology (ASCO)—“In the absence of increased risk of a childhood malignancy, ASCO recommends delaying genetic testing until an individual is of sufficient age to make an informed decision regarding such tests” (ASCO, 2003, p. 4).

American Society of Human Genetics (ASHG) and American College of Medical Genetics (ACMG)—“If the medical or psychosocial benefits of a genetic test will not accrue until adulthood, as in the case of carrier status or adult-onset diseases, genetic testing generally should be deferred” (ASHG & ACMG, 1995, p. 1233).

Society of Gynecologic Oncology (SGO)—“The SGO Education Resource Panel for Hereditary Cancers does not recommend genetic testing of women under age 21 for hereditary breast and ovarian cancer or LS/HNPCC in the absence of a family history of extremely early-onset cancer” (Lancaster et al., 2007, p. 161).

Rights and Duties of Those Involved With the Situation
Gynecologic oncologist—Has a duty to the 43-year-old mother who is her patient. This duty includes identifying patients at high risk for a cancer syndrome and providing quality counseling for LS or referring patient to a genetic healthcare provider. The physician is held to the same standard as a genetic professional when providing education and testing. The doctor does not have a duty to provide clinical care to the patient’s children. However, she does have a duty to inform the mother that the children may have a future risk of LS-related cancer and should refer the family to a genetic professional.

Mother—Has the legal right to make decisions for her minor children. She has a duty to learn what is deemed appropriate genetic heath care for children.

Gastroenterologist —Has a duty to know the guidelines of his or her specialty group (i.e., American College of Gastroenterology). He or she is not legally bound to follow these guidelines but needs to have a compelling reason for not following them to avoid malpractice concerns.

Genetic counselor—Does not have a clinical or legal duty to the mother or her children. The genetic counselor does have a duty to his or her institution.

Values of Those Involved With the Situation
Mother—The mother wished to have her children tested. We do not know her motivation for this testing.

Gynecologic oncologist—The gynecologic oncologist seemed to want to protect her 43-year-old patient by ordering genetic testing for LS. She also seemed to want to satisfy the mother’s request to have the children tested.

Gastroenterologist—The gastroenterologist seemed to be following the orders of the gynecologic oncologist.

Genetic counselor—The genetic counselor seemed to want to advocate for the family.

Resolving the Ethical Dilemma
The gynecologic oncologist and gastroenterologist together have breached a number of guidelines for genetic testing of minor children and care of an asymptomatic child at risk for adult-onset LS-related cancer. The genetic counselor could report his or her concerns to the state medical board. A second option is to contact the healthcare system’s ethics committee or consultation team if the doctors are employed by that healthcare system.

However, no laws were broken, and it may be more efficacious to turn a potential foe into an ally. The genetic counselor could instead bring the issue of reflex testing of uterine and colorectal cancer tumors using immunohistochemistry and microsatellite stability testing to the cancer committee. A policy could be initiated. The genetic counselor could provide an in-service to the cancer committee, at tumor board, and/or for the medical staff on using tumor testing to guide germline testing. The gynecologic oncologist could be a member of the task force to start a reflex tumor testing process for uterine and colorectal cancers at the institution.


American Academy of Pediatrics, Committee on Bioethics. (2001). Ethical issues with genetic testing in pediatrics. Pediatrics, 107, 1471–1455. Retrieved from http://aappolicy.aappublications.org/cgi/reprint/pediatrics;107/6/1451.pdf

American Society of Clinical Oncology. (2003). Policy statement update: Genetic testing for cancer susceptibility. Journal of Clinical Oncology, 21, 1–10. doi: 10.1200/JCO.2003.03.189

American Society of Human Genetics Board of Directors and American College of Medical Genetics Board of Directors. (1995). Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 57, 1233–1241. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1801355/pdf/ajhg00037-0249.pdf

Cassells, J.M., Jenkins, J., Lea, D.H., Calzone, K., & Johnson, E. (2003). An ethical assessment framework for addressing global genetic issues in clinical practice. Oncology Nursing Forum, 3, 383–390. doi: 10.1188/03.ONF.383-390

Lancaster, Z.J., Powell, C.B., Kauff, N.D., Cass, I., Chen, L.M., Lu, K.H., Mutch, D.G., . . . Herzog, T.J. (2007). Society of gynecologic oncologists education statement on risk assessment for inherited gynecologic cancer predispositions. Gynecologic Oncology, 107, 159–162. doi: 10.1016/j.ygyno.2007.09.031

Rex, D.K., Johnson, D.A., Anderson, J.C., Schoenfeld, P.S., Burke, C.A., & Inadomi, J.M. (2008). American College of Gastroenterology guidelines for colorectal cancer screening. American Journal of Gastroenterology. doi: 10.1038/ajg.2009.104

Twomey, J. (2011). Ethical, legal, psychosocial, and cultural implications of genomics for oncology nurses. Seminars in Oncology Nursing, 27, 54–63. doi: 10.1016/j.soncn.2010.11.007

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Special Interest Group Newsletter  August 2011

Book Review
"Previvors" Facing the Breast Cancer Gene and Making Life-Changing Decisions

Cheryl Casella-Rymer, ARNP, BC
Boynton Beach, FL

“Previvors” Facing the Breast Cancer Gene and Making Life-Changing Decisions (Includes the stories of Suzanne Citere, Rori Clark, Lisa Marton, Amy Rosenthal, and Mayde Wiener)
Author: Dina Roth Port
Copyright 2010: The Previvors LLC
Published by Penguin Group

As the title implies, “Previvors” focuses on identifying, screening, and discussing interventions and treatment options in a population that has a strong family history for developing cancer, specifically breast and ovarian cancer or other genetically-linked cancers. The premise is to empower this population with information to diminish the risk for converting from a previvor state to a survivor state. As an oncology nurse practitioner for over 20 years, I welcomed the paradigm shift of practicing on the side of previvorship. However, as you are all well aware, it is not without its complexities. Participating in the care of this population requires continued commitment on the part of healthcare providers to provide the best and most accurate information and recommendations for these individuals and their families.

Dina Roth Port in “Previvors” provides and lays the conceptual framework for persons and family members who are known as high-risk populations or have genetically-linked cancer or associated syndromes. She accomplished this in a comprehensive and accurate educational text that is easy to understand and has a step approach. She differentiates her work from other texts of this nature through a human component; her educational and scientific text is intertwined with the personal journeys of five dynamic women who had asked themselves the same question, “Am I at risk for cancer?” This allows the reader to see the practical application of identification, screening, intervention, treatment, and management options that are available as she follows them through their entire trajectory of care.

Although these five women begin with the same question, the similarity stops there. They even arrived at this question for different reasons. For example, one woman had a mother who had died of breast cancer; another had had multiple breast biopsies. The book then goes on to provide information in a factual and accurate manner on such topics as what’s my risk, psychosocial and financial issues, testing options and coverage, surveillance and prophylactic measures, recovery, sexuality, fertility, and, lastly, future generations. At each point along the way, the author incorporates the personal journey and decisions of these five women. It truly is reflective of what we as practitioners see in practice. “Previvors” is a comprehensive work that will prove to be an invaluable resource to those of us on the front lines of providing care to these high-risk populations.

In my practice, “Previvors” has become an integral part of my patients’ plan of care. I have several copies in my educational library that I share with them. Its application is broad based and can be used for the woman who is asking the question or for the family member of someone who has been identified as a carrier of the BRCA gene or anyone in between. I recently shared “Previvors” with a male patient of mine who was newly diagnosed with pancreatic cancer. I recommended testing to this individual after a family history revealed a paternal niece diagnosed with breast cancer at age 31. He was found to be BRCA positive, and his family history indicated that he has three biological daughters. After he shared his results with his daughters, he purchased a copy of “Previvors” for each of them. Subsequently, all three have been tested, and two are positive. Just like the women in “Previvors,” they have chosen different strategies for testing and management, but they are informed and remain previvors. My patient is also grateful for the knowledge that, through his misfortune, he may be able to save his children and subsequent grandchildren from the same unfortunate circumstances in which he finds himself.

A final note—nursing practice is an evolving moving target, especially in the setting of genomics and molecular profiling. Continuing education and mentorship are an important part of our practice. I would recommend “Previvors” not only as an educational component for my patients and their families but also to my colleagues who are interested in learning more about genetically-linked cancer and high-risk populations.

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Special Interest Group Newsletter  August 2011

ONS Board Makes Changes to National Conference Offerings for 2012

The ONS Board of Directors approved some exciting new changes to ONS’s national conference offerings at its March 2011 meeting. These changes are in direct response to customer feedback and the changing landscape of healthcare meetings and education.

Instead of offering four national conferences as we have done for many years, ONS will move to a new model of two national conferences per year. Congress will remain as usual and will include content of interest to all nurses, along with SIG, Annual Business, and Town Hall meetings.

The fall meetings will be replaced with one national conference to address the combined audience of researchers and advanced practice nurses (APNs) who are conducting and applying evidence to the care for patients with cancer. The meeting will offer intermediate- to advanced-level clinical content with pre-conference skills workshops. Incorporating an interdisciplinary focus, the meeting additionally will target non-oncology APNs, researchers, clinical trials nurses, and graduate students. Advanced Nursing Research, Nurse Practitioner, and Clinical Nurse Specialist SIG meetings, as well as a Town Hall meeting, will be included in conference programming.

These changes were made in response to feedback from members and changes in today’s professional education environment. ONS has heard from members via surveys, evaluations, and anecdotally that regional live conferences and online CNE are more appealing in the current healthcare climate. Employer-provided financial support, as well as the ability to take time off work, has been reduced or eliminated for many nurses in recent years. Additionally, attendance at ONS national conferences has remained flat or gone down over the past three years, especially at the Institutes of Learning meetings.

Marketing trends support an increased preference for more targeted programs and services that meet individualized needs. ONS also has a strategic interest in meeting the oncology-related learning needs of all nurses who care for individuals with cancer but are not oncology specialists. All of these factors led to a review of ONS’s current offerings and recommendations for changes in the personality of the various options.

“Multiple perspectives were considered in making the final decision, including the timing of both conferences, other competing meetings, and the volunteer voice,” said President Carlton G. Brown, RN, PhD, AOCN®. “The Board members made the decision based on what they felt was best for the organization moving forward.”

The 2011 conferences will remain in their current format. The 2011 Congress is scheduled for April 28–May 1 in Boston, MA, and the Institutes of Learning/APN Conferences will be held in November 2011 in Salt Lake City, UT. The above mentioned changes are scheduled to begin in 2012. The 37th ONS Annual Congress is scheduled for May 3–6, 2012, in New Orleans, LA. The new format Research APN Conference will begin in November 2012.

To learn more about ONS’s national conferences, visit our Web site. As always, to provide feedback to the ONS Board of Directors and ONS, send your comments and suggestions to suggestionbox@ons.org.

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Special Interest Group Newsletter  August 2011

ONS Joins the Journey Forward Survivorship Collaborative

ONS has joined forces with the survivorship group Journey Forward, which is a collaboration of the National Coalition for Cancer Survivorship, University of California Los Angeles Cancer Survivorship Center, WellPoint, and Genentech. Journey Forward offers a free software tool designed to create customized survivorship care plans for patients.

“Nurses are key providers of education for patients through their diagnosis and treatment, so this partnership is a natural fit as we work together to communicate about the importance of survivorship care plans,” said ONS Director of Education Michele Galioto, RN, MSN.

The Survivorship Care Plan software can be downloaded from Journey Forward’s Web site. It is based on ASCO treatment summary templates and surveillance guidelines. ONS’s evidence-based guidelines, symptom management resources, and the growing collection of quality indicators will eventually be incorporated into the survivorship plans.

Galioto noted that survivorship care plans put survivors in a better position to advocate for themselves, monitor their health, and participate in decisions about their future care.

“This partnership allows us to bring valuable tools to nurses and to reach beyond our membership as we work to improve care for all patients,” she said.

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Special Interest Group Newsletter  August 2011


RE:Connect is a blog written by oncology nurses on a variety of topics of interest to other nurses in the specialty, including facing day-to-day challenges at work, juggling busy lives at home, and keeping up to date with the magnitude of information available for practicing nurses. This month on RE:Connect, you’ll find discussions titled Can Your Intentions Affect Your Nursing?, Giving Up the Chart, and Sharing the Screening Message. As a reader, join in on the conversation and connect with other oncology nurse readers by posting your own stories, tips, ideas, and suggestions in the comments section at the end of each blog post.

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Special Interest Group Newsletter  August 2011

Five-Minute In-Service

In the latest issue of ONS Connect, the Five-Minute In-Service takes a look at Developing an Outpatient Symptom Management Clinic, which appeared in the January 2011 issue of the Oncology Nursing Forum.
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Special Interest Group Newsletter  August 2011

ONS Podcasts of Interest

ONF Podcasts
How do we define “distance” in caregiving? Is it measured in miles, time, feelings, or relationships? This month, lead author Polly Mazanec, PhD, ACNP, AOCN®, answers these and similar questions as she discusses her May 2011 ONF article “Lack of Communication and Control: Experiences of Distance Caregivers of Parents With Advanced Cancer.” This is the first study of its kind to describe the experience of distance caregiving, an emerging phenomenon in the United States. In this podcast, the benefits and burdens of distance caregiving are explored as well as ways to support adult children of parents with advanced cancer.

CJONPlus Podcasts
Sleep-wake disturbances, especially insomnia, are among the most prevalent and distressing symptoms experienced by patients with cancer. Cognitive behavioral therapy is considered the standard of care for the treatment of insomnia in the general population and is part of the ONS Putting Evidence into Practice recommendations as "likely to be effective" for patients with cancer.

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Special Interest Group Newsletter  August 2011

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  • Select "Log In," located next to "New User," and enter your information.
  • Next, click on the "Discussion" tab on the top right of the title bar.
  • Locate and select "Subscribe to Discussion"
  • Enter e-mail address.
  • Click "Finish."
  • You are now ready to begin participating in your SIG’s discussion forum.

Participate in Your SIG’s Virtual Community Discussion Forum

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  • Click on "Discussion" from the top title bar.
  • Click on any posted topic to view contents and post responses.

Sign Up to Receive Your SIG’s Virtual Community Announcements
As an added feature, members also are able to register to receive their SIG’s announcements by e-mail.

  • From your SIG’s Virtual Community page, locate the "Sign Up Here to Receive Your SIG’s Announcements" section.
  • Select the "Click Here" feature, which will take you to a link to subscribe.
  • Once the "For Announcement Subscription Only" page appears select how you wish to receive your announcements.
    • As individual e-mails each time a new announcement is posted
    • One e-mail per day comprised of all new daily announcements posted
    • Opt-out, indicating that you will frequently browse your SIG’s Virtual Community page for new postings
  • Enter your e-mail address.
  • Click on "Next Page."
  • Click "Finish"
  • You are now subscribed to receive announcements.
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Special Interest Group Newsletter  August 2011

Cancer Genetics SIG Officers

Coordinator (2010–2012)
Patricia Kelly, DNP, APRN, CNS, AOCN®
Dallas, TX

Coordinator-Elect (2011–2012)
Jacqueline Hale, RN, APN-C, AOCN®
Flemington, NJ

Rose Bell, ARNP-C, MSN, OCN®
Gig Harbor, WA

Robin Stevens, ARNP, OCN®
Jupiter, FL


Web Administrator
Lisa Aiello-Laws, RN, MSN, APNG, AOCNS®
North Cape May, NJ

Special Projects
Julie Eggert, PhD, APRN-BC, AOCN®
Greer, SC

ONS Copy Editor
Emily Nalevanko, MFA
Pittsburgh, PA

Know someone who would like to receive a print copy of this newsletter?
To print a copy of this newsletter from your home or office computer, click here or on the printer icon located on the SIG Newsletter front page. Print copies of each online SIG newsletter also are available through the ONS National Office. To have a copy mailed to you or another SIG member, contact Membership/Leadership Specialist Carol DeMarco at cdemarco@ons.org or 866-257-4ONS, ext. 6230.

View past newsletters.

ONS Membership & Component Relations Department Contact Information

Brian K. Theil, CAE, Director of Membership and Component Relations Department

Diane Scheuring, MBA, CAE, CMP, Manager of Member Services

Carol DeMarco, Membership Specialist—SIGs

The Oncology Nursing Society (ONS) does not assume responsibility for the opinions expressed and information provided by authors or by Special Interest Groups (SIGs). Acceptance of advertising or corporate support does not indicate or imply endorsement of the company or its products by ONS or the SIG. Web sites listed in the SIG newsletters are provided for information only. Hosts are responsible for their own content and availability.

Oncology Nursing Society
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Pittsburgh, PA 15275-1214

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