Cancer Genetics

special interest group newsletter

Volume 17, Issue 3, December 2013
Nursing Skills in the Genomic Age:
Using the “Rights” in Genetic Assessment

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

We all remember our student days. One of my daughters has returned to school for nursing as a second career. I am incredibly proud, but memories come back as she describes learning skills, passing exams, having clinical days, and “hoping you have the right answer when your instructor looks expectantly at you.” We probably all wanted that “right answer” and wanted even more to make sure we had all the other “rights.” We checked for the five rights of medication administration, including right medication, route, patient, time, and dose. We confirmed the right procedure. The checks and double checks that are engrained in us are also part of genetic and genomic nursing. Many newly diagnosed patients with breast cancer seek testing for hereditary breast and ovarian cancer prior to finalizing surgical and medical management decisions. I would like to share a recent patient’s experience that highlights the importance of selecting the “right test” and why checking, double checking, verifying, and confirming are important.

Staff members at Hunterdon Women’s Imaging Center in Flemington, NJ, referred a 50-year-old woman with suspicious mammography findings to our nurse navigator, Jessica Danek, BSN, RN, at Hunterdon Regional Cancer Center in Flemington, NJ. Jessica made all the appropriate arrangements and asked the patient about her family history of cancer. The patient indicated that her paternal grandmother and a distant paternal cousin had breast cancer. Jessica suggested that the patient call the local risk assessment clinic for further assessment. Jessica also had provided the patient’s contact information to the risk assessment program for outreach purposes, in case the patient did not initiate a call. The patient saw the surgeon, had a biopsy, and had a confirmed breast cancer diagnosis. The patient, in consultation with her surgeon and radiation therapist, scheduled a lumpectomy to be followed by radiation therapy.

The risk assessment staff initiated contact. The patient indicated that she did not need risk assessment because

  • Her family history of breast cancer was on the paternal side of the family and, therefore, not applicable.
  • Her distant cousin had BRCA testing, and the results were negative.

She explained that her first treatment preference was a bilateral mastectomy. However, in light of her cousin’s negative BRCA test results, she and her surgeon decided that lumpectomy and radiation would fit better into her plans for the next few months. When the nurse asked if she had a copy of the BRCA test results, the patient replied that another relative had given her a copy “in case she ever got cancer and needed it.” She said that she had read the paperwork, and it did not indicate a mutation.

The risk assessment nurse encouraged the patient to provide a copy of the testing results for her file, especially to confirm the reported information. The patient offered to read and describe the report over the phone. In reading the report, the patient said, “And I guess I don’t know what this part means, but there are some letters and numbers with one of those ‘greater than’ signs.” The nurse explained that this sounded like a description of a mutation (or a variant), and this was information that could affect her treatment plan. The patient brought her report to the nurse the next day. The document confirmed that a deleterious BRCA mutation had been identified in the paternal cousin. The nurse contacted the surgeon, and they agreed to postpone the surgery until BRCA testing was done. The patient‘s genetic test confirmed that she also carried the deleterious BRCA mutation previously identified in the family. She opted for bilateral mastectomy and a future oophorectomy. The risk assessment team counseled her two adult daughters to consider genetic testing as well.

The nurse navigator’s critical thinking skills and interactions with the patient and surgeon changed this patient’s treatment course. The patient got the right genetic test at the right time. Skills we develop early in our careers remain essential to patient care outcomes, even in this era of technology and genomic advances.

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

Cancer Genetics

Special Interest Group Newsletter  December 2013

Nurse Navigation, Genetics, and Diversity:
Selected Stories

Nancy Foreman, BSN, RN, OCN®, CBCN®
Flagstaff, AZ

I have been a Cancer Genetics SIG member for several years and have enjoyed the SIG newsletter. I am a bachelor of science in nursing-prepared oncology nurse navigator, and I hold certifications as an oncology certified nurse and a Certified Breast Care Nurse. I work at the Cancer Center of North Arizona in Flagstaff, AZ. Our center provides services to an area more than twice the size of Massachusetts. Approximately 25% of our patients are Native Americans from the Navajo and Hopi nations. I wrote this article to share some of the challenges of providing genetics services in an ethnically diverse and under-served area.

Several years ago, I became interested in genetics and realized we had a need to provide local services for genetic counseling and testing. Many of our patients travel two to three hours to our center, and travelling another two to three hours to Phoenix to see a geneticist is difficult for them. I knew I needed additional education and training in genetics. With the support of my cancer center director, I completed the Fox Chase Genetics Program “Bridging Genomic Science and Practice: Cancer Risk Assessment, Treatment, and Beyond,” completed the online ONS cancer genetics course, and attended genetics sessions at the National Consortium of Breast Centers annual conferences. I have additional genetics resources through our cancer center’s affiliation with the University of Arizona Cancer Center. Currently, I work with our local surgeons and medical and radiation oncologists to provide cancer risk assessment, education, and genetic testing. I see all newly diagnosed patients with breast cancer—approximately 120 patients per year—and provide hereditary cancer risk assessment on an as needed basis.

Interesting Cases

Colon cancer: A 28-year-old Native American male came to our clinic with a new diagnosis of a large-obstructing colon cancer. His family history included his father and two of his father's siblings being diagnosed with colon cancer in their 50s. His family history had obvious red flags. Our oncologist and surgeon asked for direction in obtaining microsatellite instability and immunohistochemistry testing for mismatch repair proteins on the patient’s tumor specimen. The pathologist and I worked with the University of Arizona to provide this initial screening. The patient eventually had full sequence testing and was found to have a mutation in the MLH1 gene. Financial coverage for the testing was a challenge, as the patient had Medicaid, but we were able to obtain coverage with a letter-writing campaign. I currently am working with a surgeon from the Navajo reservation who has experience in presenting this information (genetic testing results) to Native Americans. Cancer is a culturally sensitive topic in the Native American culture, as it is taboo to think or talk about cancer. Native Americans believe that talking about the disease causes it to happen. I have had several Native American women who have met National Comprehensive Cancer Network (NCCN) guidelines for genetic testing for hereditary breast cancer, but they have refused to do so for cultural reasons.

Breast and ovarian cancer: While giving chemotherapy to a 45-year-old patient with a diagnosis of endometrial cancer, our healthcare team noted that her pathology report findings included a notation about the possibility of a primary peritoneal cancer. The patient had casually mentioned the support she received from her rabbi. On further questioning, she indicated she was of Ashkenazi Jewish descent. After a discussion with her oncologist and me, she elected to have BRCA testing and was positive for a BRCA gene mutation. Interestingly, the mutation was not one of the typical Ashkenazi Jewish founder mutations.

Early-onset breast cancer and family history: We had a 45-year-old patient present to our clinic with a diagnosis of HER2/neu-positive breast cancer. Her family history included a father diagnosed with prostate cancer in his 50s and a paternal great aunt diagnosed with breast cancer in her 50s. She initially was treated with a lumpectomy, followed by adjuvant chemotherapy. She underwent testing for a BRCA mutation and was found to be positive for a BRCA2 gene mutation. Because of her genetic testing results and after completing adjuvant chemotherapy, she elected to have a bilateral mastectomy.

Unexpected benefits of hereditary breast cancer education: A 50-year-old patient with a diagnosis of breast cancer came to our clinic. She had a positive family history for breast cancer and met NCCN guidelines for genetic testing. She tested negative for a BRCA mutation but had unrelated family members who had red flags for a hereditary cancer syndrome. Because of the education we provided about hereditary cancer syndromes, she contacted her relatives and encouraged them to have genetic testing. A BRCA gene mutation was found, and family members followed through with increased screening and risk-reduction surgeries.

Every patient with a cancer diagnosis deserves to have an assessment for hereditary cancer syndromes, but not all patients have access to genetics specialists. Because of my experiences, I believe that nurse navigators with specialized genetics training and consultative agreements with genetics specialists can help facilitate, in cooperation with the healthcare team, initial risk assessment, education, and testing for hereditary cancer syndromes.

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Cancer Genetics

Special Interest Group Newsletter  December 2013

An Update on the Method for Introducing New Competencies Study:
Bringing Genomics to the Bedside

Beth Hayden, MBA, RN, OCN®
Rockford, IL

Peggy Rogers, BSN, RN, OCN®
Rockford, IL

As previously reported in the August 2012 and December 2012 issues of the Cancer Genetics SIG Newsletter, the National Council of State Boards of Nursing Center for Regulatory Excellence grant program awarded a West Virginia University school a two-year $300,000 grant to develop, implement, and evaluate a program to improve genetics knowledge among nurses. The title of the project is “Expanding RN Scope of Practice: A Method for Introducing a New Competency Into Nursing Practice (MINC).” This study aims to establish and assess the outcome of a Magnet™ Champion yearlong intervention to improve the capacity of the institution to integrate genomics into nursing healthcare delivery.

Project Update
The 21 Magnet hospital dyad teams (administrators and educators) now have completed the third phase of the study. In August 2013, participating Magnet hospitals asked their nurses to complete a post-genomics project survey. More than 7,000 nurses from participating hospitals across the country have now completed the pre- (July/August 2012) and post- (July/August 2013) “Genetics and Genomics in Nursing Practice” surveys. Study investigators Laurie Badzek, LLM, JD, RN, FAAN, Kathleen Calzone, PhD, RN, APNG, FAAN, and Jean Jenkins, PhD, RN, FAAN, have preliminary comparative statistics on pre- and post-survey results and have shared institutional pre- and post-scores with participating sites. In addition, study investigators interviewed the dyad teams and assessed their individual hospital action plan outcomes. On September 26 and 27, the 21 Magnet hospital dyad teams met in Washington, DC, or participated in an online conference for a “realization” meeting. The purpose of the meeting was to share institutional experiences and best practice interventions for developing nursing competencies and integrating genomics into nursing care delivery. The dyads also shared what will be needed to keep the momentum alive and foster sustainability. Topics discussed included

  • Effective personal development action plans
  • Successful strategies for genetics and genomics education
  • Innovative approaches for increasing awareness and integrating genomics into nursing care delivery
  • Factors that could positively or negatively affect sustainability and advancement.

The second and final day of the meeting included a keynote address by W. Greg Feero, MD, PhD, entitled “Genomics in 2013 and Beyond: Charting a Course for Genomic Integration Into Practice.” Following Feero’s dynamic and enlightening presentation, the dyads developed  a sustainability plan for the future. Dyad participants divided into small groups to discuss development of a toolkit for future dyads, dissemination of an action plan, and creation of a genomic cost-benefit analysis.

One of the highlights of the realization meeting included a guided tour of the Smithsonian Natural History Museum and National Human Genome Research Institute genome exhibition. This interactive display is a delight for the young and old to experience, and it touches on every aspect within the Human Genome Project. At the realization meeting, members of the dyads expressed renewed energy in sharing their experiences with one another and continuing with plans to develop genetic and genomic nursing competencies.

Note. OSF Saint Anthony Medical Center in Rockford, IL, is one of 21 Magnet-designated hospitals chosen to participate in the MINC project. Beth Hayden and Peggy Rogers are the administrator/educator dyad for their hospital.

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Cancer Genetics

Special Interest Group Newsletter  December 2013

We Are Growing!

Thanks to all of you, the Cancer Genetics SIG membership has increased dramatically over the past two-and-a-half years. We have had a 240% increase in membership since January 2011. Nurses are seeing the value of genetics and genomics in their clinical practice.

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Cancer Genetics

Special Interest Group Newsletter  December 2013

Exclusive Articles Available Before Print

The Oncology Nursing Forum (ONF) and the Clinical Journal of Oncology Nursing (CJON) have unveiled advanced print exclusive articles to give our readers access to important, cutting-edge content ahead of print. Articles from the journals are available on the main ONF and CJON pages. These articles are open access, meaning they are available to members and non-members alike, until they appear in print at a later date. At that time, the content will become password-protected like other articles that appear in print as online exclusives in the journals.

The latest article to receive the advanced print exclusive designation is “Telephone Calls Postdischarge From Hospital to Home: A Literature Review” by Kristin E. Hand, BSN, RN, OCN®, and Regina S. Cunningham, PhD, RN, AOCN®. The goal of this CJON article is to provide an understanding about postdischarge telephone calls in patients with cancer. Check out this timely and informative article today.

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Cancer Genetics

Special Interest Group Newsletter  December 2013

Journals Available in Digital Format

Did you know that the Clinical Journal of Oncology Nursing (CJON) and Oncology Nursing Forum (ONF) are available in digital format? To access the digital editions, click on the journal you wish to view at and follow the instructions featured prominently in the top center of the page. The digital editions are a members-only benefit, so make sure you have your ONS username and password handy.

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Cancer Genetics

Special Interest Group Newsletter  December 2013

Check out the ONS Connect Blog

The official blog of ONS is written by oncology nurses for oncology nurses on a variety of topics of interest, 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, you’ll find the following new discussions.

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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Cancer Genetics

Special Interest Group Newsletter  December 2013

Five-Minute In-Service

The latest Five-Minute In-Service explains how Telephone Reporting Identifies Symptoms Most Important to Patients.

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Cancer Genetics

Special Interest Group Newsletter  December 2013

Ask a Team Member

The latest Ask a Team Member column answers the question Are All TKIs the Same When It Comes to Drug Interactions?

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Cancer Genetics

Special Interest Group Newsletter  December 2013

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Cancer Genetics

Special Interest Group Newsletter  December 2013

Cancer Genetics SIG Officers

Coordinator (2012-2014)
Jacqueline Hale, RN, APN-C, AOCN®, APNG
Flemington, NJ

Coordinator-Elect (2013-2014)
Catherine Belt, RN, MSN, AOCN®
Hatfield, PA

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


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

Special Projects
Julie Eggert, RN, PhD, GNP-C, AOCN®
Greer, SC

ONS Copy Editor
Jessica Moore, BA, BS
Pittsburgh, PA

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