Volume 15, Issue 3, December 2011
Becoming Popular
Family History Assessment

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

Being popular can occur almost instantaneously, or it may be a gradual process. I think of Facebook, the social networking service, as a wildly popular invention that had a surge of acceptance among young adults during a few short months and now has some 750 million active users of all ages. Other examples of popularity reflect a gradual acceptance of a person, place, or concept. As a high school freshman, I remember feeling a reluctant acceptance of playing in the band, something I personally enjoyed but not a particularly popular activity. I have noted with pleasure a steady increase in the popularity of family history assessment, a core competency of genetic nursing and a skill I value. Although family history assessment has been around for decades, it has never been on nursing's top-ten skills lists. Family history assessment is not flashy, does not require expensive equipment, and may or may not be reimbursable. It does take time and thought and is relational and relevant. Family health history tells a story, clarifies health risks, is relatively simple to prepare and update, and has clinical utility. For example, a family health history of colon cancer personalizes colorectal cancer screening guidelines, identifies patients or family members who would benefit from genetic testing, and can be a stimulus to make healthy lifestyle changes (Kelly, 2011). A recent article in the American Journal of Gastroenterology adds another dimension—the monetary incentive for family history-based colorectal cancer screening. Using a decision analysis model, Ramsey, Wilschut, Boer, and van Ballegooijen (2010) estimate the value of family history-based colorectal cancer screening to be $18,000 to $45,000 per life year gained. (Our financially-minded leaders will like this perspective.)

Over the past few months, I have read several family history-related articles in a variety of specialty journals. Consider some of the following.

  • Alspach, J.G. (2011). The importance of family health history: Your patients' and your own. Critical Care Nurse, 31, 10–15. doi: 10.4037/ccn2011884 (A four-page educational editorial with a family history resource table on page 14)
  • American College of Obstetricians and Gynecologists Committee on Genetics. (2011). Committee opinion: Family history as a risk assessment tool. Obstetrics and Gynecology, 117, 747–750. (Includes recommendations that all women have a family history evaluation, that the evaluation should be reviewed and updated, and when indicated, consider referral to genetic services)
  • Ziogas, A., Horick, N.K., Kinney, A.Y., Lowery, J.T., Domchek, S.M., Isaacs, C., . . . Plon, S.E. (2011). Clinically relevant changes in family history of cancer over time. Journal of American Medical Association, 306, 172–178. (A retrospective and prospective descriptive study to evaluate family cancer history changes over time. Based on data analysis, family history should be updated every 5–10 years.)
  • National Coalition of Health Professionals in Genetics. (2011). Core principles in family history. Retrieved from http://www.nchpeg.org/index.php?option=com _content&view=article&id=201&Itemid=124 (An excellent tool for educators; overview includes principles for standard data collection [family history], interpretation, and intervention.)

Although this is not a complete list, I would characterize the interest in family history assessment as showing a steady increase in popularity. I am encouraged that others are recognizing its value. A steady and enduring acceptance is noteworthy.

P.S. I may even hunt for the clarinet that is hidden deep in my closet.

I welcome feedback and response to this "Coordinator's Message." To share additional thoughts, comments, resources, and analogies, please go to the Cancer Genetics SIG Virtual Community discussion board.

Kelly, P. (2011). Colorectal cancer family history assessment: Documentation, deficiencies, and futures directions. Clinical Journal of Oncology Nursing, 15, E75-E82. doi: 10.1188/11.CJON.E75–E82

Ramsey, S.D., Wilschut, J., Boer, R., & van Ballegooijen, M. (2010). A decision-analytic evaluation of the cost-effectiveness of family history-based colorectal cancer screening program. American Journal of Gastroenterology, 105, 186–189. doi: 10.1038/ajg.2010.185

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  December 2011

Case Study

Susan Montgomery, RN, BSN, OCN®, GCN
Philadelphia, PA

Recently, Jackie Hale, RN, APN-C, AOCN®, APNG, and I had the opportunity to present case studies at ONS for the Cancer Genetics SIG meeting. During that session, I met many nurses with a vast range of experience in cancer-risk assessment. The underlying thread throughout our discussions was the importance of taking a thorough family history. The information that we obtain from a patient's family history can give us insight into cancer syndromes, hereditary diseases, cardiac concerns, mental health issues, and a myriad of other genetic problems. The National Coalition for Health Professional Education in Genetics (NCHPEG) recently announced a new program teaching skills specific to collecting and interpreting family history aimed at clinicians and educators. The "Core Principles in Family History," funded by the Audrey Heimler Special Projects fund of the National Society of Genetic Counselors and the National Human Genome Research Institute, presents a framework for teaching these skills.

Our local newspaper, the Philadelphia Inquirer, recently launched a 45-week project to inspire suggestions from Philadelphians with great ideas for the city and region. Mary Daly, MD, PhD, and Chair of the Department of Clinical Genetics at Fox Chase Cancer Center, was polled, and her idea was to know your family's cancer history. She added that "a family history not only tells you about shared genetics but about shared environments, shared exposure, and shared behaviors, which also may contribute to your risk." As clinicians, let's take this great idea and get to know the family history of all of our patients.

Case Study
Joan was referred by her oncologist for cancer-risk counseling for a history of a precancerous colon polyp approximately 12 years ago. Since the first polyp, she has had a colonoscopy every three years. Her last colonoscopy was performed a year ago and was within normal limits. Three months ago, she developed intermittent bleeding. She underwent a sigmoidoscopy that revealed a mass, and biopsy was consistent with adenocarcinoma. She underwent neoadjuvant radiation and 5 FU based chemotherapy with surgery planned thereafter. Joan required a colostomy because of the proximity of the mass to her rectum and expressed a desire to undergo a total abdominal hysterectomy at the same time based on her personal and family history. She also was concerned about her son, because of a precancerous colon polyp recently found on colonoscopy.

Additionally, Joan shared that many years ago she was diagnosed with breast cancer. She recalled that it was ductal but was uncertain whether it was invasive or in situ. She decided to undergo bilateral mastectomy at that time, and she did not receive adjuvant chemotherapy or radiation.

Her family pedigree (see above) revealed a strong family history of breast and colon cancers as well as an ovarian cancer. The family history suggests the possibility of two hereditary cancer syndromes for consideration. The patient's own diagnosis of early onset breast cancer coupled with the breast and ovarian cancers in the family suggests BRCA1/2. Additionally, Joan met revised Bethesda criteria for Lynch syndrome with her personal history as well as a family history of two or more first or second degree relatives with Lynch-related tumors.

We felt that we should begin with BRCA analysis as this result could be obtained in a timely manner and could assist her in a surgical decision regarding oophorectomy. We ordered BRCA1/2 comprehensive testing—BART rearrangement testing was not covered by insurance. No mutation was detected on BRCA1/2.

These results were discussed with Joan, and she proceeded with her surgery including an oophorectomy. Pathology revealed no diagnostic abnormalities. Pathology of the colon revealed a residual adenocarcinoma measuring 3.0 cm in a tubular adenoma.

We then decided to proceed with tumor testing for Lynch syndrome. Tumor testing was done before germline testing because it can help direct additional testing, is less expensive, and if normal, may rule out Lynch syndrome.

Tumor testing is two-pronged. Microsatellite instability testing (MSI) is molecular testing of tumor DNA. It generally looks at a panel of five microsatellite loci to determine stability. About 85%–90% of Lynch-associated colorectal tumors exhibit MSI. We requested and received Joan's original biopsy for MSI testing as her resected tumor sample underwent neoadjuvant radiation, and radiated tissue is not recommended for MSI or Immunohistochemistry (IHC) testing.

IHC testing looks for the presence or absence of mismatch repair proteins in tumor cells. Normal colon tissue is used as a control. As the biopsy tissue was exhausted with the MSI testing, tumor tissue was used for IHC. Absence of expression of one or more of the mismatch repair proteins suggests a germline mutation may be present. Eighty-five percent of all Lynch syndrome colorectal cancers will have abnormal IHC results.

Joan's MSI testing looked at five markers; all were stable, indicating that the tumor was microsatellite stable. IHC testing revealed no loss of expression in MSH2/MLH1/MSH6/PMS2 and was interpreted as normal.

Joan has completed her surgery and chemotherapy. She will be returning for another counseling visit next month to summarize our findings and discuss recommendations. We also will be addressing cancer risk for Joan's son and her siblings. Although we were unable to identify a hereditary cancer syndrome through genetic testing, we can continue to follow Joan and her family and offer screening recommendations based on the family history.

We encourage questions and comments about clinical case studies. Please share your thoughts by posting on the Virtual Community discussion board or contact Susan Montgomery.

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Special Interest Group Newsletter  December 2011

To Test or Not to Test
The Influence of Ashkenazi Jewish Ethnicity

Niecee Singer Schonberger, MS, CGC
Genetics Program Coordinator

Jennifer Lezak Miller, LCSW
National Director of Programs and Education

All pre-menopausal women facing breast cancer have unique concerns. Their cancers tend to be more aggressive, may result in early menopause, and are associated with higher mortality rates. In addition to being at increased hereditary risk for breast and ovarian cancer, young Ashkenazi (those of Central or Eastern European descent) Jewish (AJ) women, particularly those who are very observant of Jewish Law, face specific concerns because of ethnic, cultural, and religious mores.

One of the unique issues faced by Jewish women, regardless of the level of their religious adherence, is the fact that cancers in AJ families are far more likely to have a hereditary basis than in non-Jewish families. The hereditary risk for AJ women is high—it has been estimated that 1 in 40 individuals carry a deleterious mutation as opposed to approximately 1 in 400 in the general population (Anglian Breast Cancer Study Group, 2000; Antoniou, Gayther, Stratton, Ponder, & Easton, 2000; Coughlin, Khoury, & Steinberg, 1999; Narod, & Foulkes, 2004). Additionally, a 2004 New York Breast Cancer Study that studied AJ women found that an increased risk exists of breast cancer for members of this group born after 1940 (King, Marks, & Mandell, 2004).

The most significant indication of hereditary susceptibility and the determination whether testing is appropriate is family history. This becomes even more challenging in AJ women. This is primarily because of the difficulty in tracing their family history, because most of their families may have been lost during the Holocaust. As researcher Steven Narod recently demonstrated, women who test negative for BRCA mutations but who have a strong family history of breast cancer are four times more likely to develop breast cancer than women in the general population (Metcalfe et al., 2008). With a negative BRCA analysis but no accurate knowledge of family history, a Jewish woman may be left without any basis for estimating her true risk.

Cancer is a disease that physically exists within one individual but psychologically resides within the family group. Some Jewish families, particularly those who closely adhere to Jewish Law, live in extremely tight-knit communities. This extended family and sense of community can provide tremendous support and be a valuable resource in many areas of daily life while facing cancer. However, this closeness as a community also can be an intrusion and create a lack of privacy in the details of daily life. A Jewish woman with cancer, especially one caused by a hereditary genetic mutation, is perceived as tainted in some communities and thus the diagnosis of cancer is kept secret, shutting the woman off from the community support she needs during this stressful time. She may also be fearful of pursuing genetic testing because community knowledge about a hereditary cancer in her family could mark her children as tainted and unsuitable for marriage. This issue is especially problematic for women in the Orthodox Jewish community. The result is isolation, not only from others with breast cancer or ovarian cancer in the community but also from the woman's own family. The family may refuse to even discuss her diagnosis and prognosis. An additional source of psychological distress can occur if, as a result of a daughter being diagnosed with breast or ovarian cancer, a mother or father becomes aware that she or he has passed the BRCA gene mutation on to the next generation. This brings feelings of tremendous guilt and sadness.

Each woman begins her journey with breast or ovarian cancer with different support needs. Unique personal and cultural identities will determine what she is comfortable asking for and with whom she wants to surround herself as she faces the challenges along the way. While women of all backgrounds share common experiences when dealing with breast and ovarian cancer, it is critical to acknowledge some of the unique concerns of Jewish women that may not be well understood by other cultures. The questions from young Jewish women need to be addressed by sources knowledgeable in Jewish Law, culture, and practices. Sharsheret fills that need.

Sharsheret supports young Jewish women and families facing breast and ovarian cancer before, during, and after diagnosis. The name, Sharsheret, means "chain" in Hebrew and represents the strong nurturing connections we, who work at Sharsheret, build to support Jewish women and their families. We help them connect to our community in the way that feels most comfortable, taking into consideration their stage of life, diagnosis, and treatment, as well as their connection to Judaism. We also provide educational resources and create programs for women and families to improve their quality of life.
We understand that young Jewish women have unique concerns when it comes to breast and ovarian cancer, and we are the only organization that specializes in serving them. Sharsheret is a growing community, and together, we are creating a chain of strong links that reaches across the country so that no woman or family of Jewish descent has to face the challenges of breast or ovarian cancer alone. Our 11 national programs are free and easy to access no matter where a woman lives. Our programs include a national peer support network, individualized support for women living with advanced breast and ovarian cancer, genetics counseling, resources for mothers facing breast cancer who have young children, a kit for addressing the side effects of treatment, supports and resources for caregivers and family members, healthcare symposia, a breast health campus education program, and an educational booklet series including "Your Jewish Genes." Our genetic counselor also is available to medical professionals to discuss questions they might have about genetic counseling and testing for AJ women.

Visit www.sharsheret.org or call 866-474-2774 to learn more. To schedule an educational Webinar for your medical center about the hereditary and cultural issues that young Jewish women facing breast cancer experience, contact Jennifer Lezak Miller, LCSW, National Director of Programs and Education.

Anglian Breast Cancer Study Group. (2000). Prevalence and penetrance of BRCA1 and BRCA2 mutations in a population-based series of breast cancer cases. British Journal of Cancer, 83, 1301–1308. doi: 10.1054/bjoc.2000.1407

Antoniou, A.C., Gayther, S.A., Stratton, J.F., Ponder, B.A.J., & Easton, D.F. (2000). Risk models for familial ovarian and breast cancer. Genetic Epidemiology, 18, 173–190. doi: 10.1002/(SICI)1098-2272(200002)18:2<173::AID-GEPI6>3.0.CO;2-R

Coughlin, S.S., Khoury, M.J., & Steinberg, K.K. (1999). BRCA1 and BRCA2 gene mutations and risk of breast cancer: Public health perspectives. American Journal of Preventative Medicine, 16, 91–98. doi: 10.1016/S0749-3797(98)00136-6

King, M.C., Marks, J.H., & Mandell, J.B. (2004). Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2. Science, 302, 643–646. doi: 10.1126/science.1088759

Metcalfe, K.A., Finch, A., Poll, A., Horsman, D., Kim-Sing, C., Scott, J., . . . Narod, S.A. (2008). Breast cancer risks in women with a family history of breast or ovarian cancer who have tested negative for a BRCA1 or BRCA2 mutation. British Journal of Cancer, 100, 421–425. doi: 10.1038/sj.bjc.6604830

Narod, S.A., & Foulkes, W.D. (2004). BRCA1 and BRCA2: 1994 and beyond. Nature Reviews Cancer, 4, 665–676. doi: 10.1038/nrc1431

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Special Interest Group Newsletter  December 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 new discussions titled The Wonderful World of Outpatient Services, Do Survivors Get Lost Among All the Pink?, and Become a Link in the Sharsharet Chain. 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  December 2011

Five-Minute In-Service

In the latest issue of ONS Connect, the Five-Minute In-Service takes a look at how to Put Evidence Into Practice to Manage Radiodermatitis.

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Special Interest Group Newsletter  December 2011

ONS Podcasts of Interest

ONF Podcasts
The philosopher Martin Heidegger often used the metaphor of "coming to a clearing in the woods" as a way of coming in touch with an enlightened interpretation of the world (Conroy, 2003). Lead author Meghan L. Underhill, PhD, RN, AOCNS®, brings us to the philosophical clearing in the woods in regard to breast surveillance with her November 2011 CJON article "Engaging in Medical Vigilance: Understanding the Personal Meaning of Breast Surveillance" (co-authored by Suzanne S. Dickerson, RN, DNS).

In this podcast, Underhill and CJON Associate Editor Ellen Giarelli, EdD, RN, CRNP, explore in-depth hermeneutic phenomenology and discuss how this approach to understanding the phenomenon of breast surveillance can help nurses prepare to work with women who are the "experts on their illness."

CJONPlus Podcasts
Despite medical advances, febrile neutropenia experienced by chemotherapy recipients remains a potential life-threatening emergency that requires timely antibiotic administration. In this CJONPlus podcast, authors Erika Hawley, RN, BSN, MBA, OCN®, Molly Loney, RN, MSN, AOCN®, and Michelle Wiece, RN, OCN®, discuss their recent CJON article titled "A Multidisciplinary Team's Development of Tools and Processes to Improve Treatment Times."

The podcast and article describe a multidisciplinary best-practice model developed to achieve timely recognition of febrile neutropenia and a one-hour benchmark for antibiotic administration. At the institution where the model was developed, collaboration between the cancer center and emergency department was vital to providing a vehicle for critically analyzing current practice and developing effective throughput pathways and educational tools intended to improve clinical outcomes for this high-risk population.

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Special Interest Group Newsletter  December 2011

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Special Interest Group Newsletter  December 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®, APNG
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

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