Volume 11, Issue 1, February 2007
Message From the Coordinator
Newsletter Highlights Pancreatic Cancer

Jennifer Loud, RN, MSN, CRNP
Derwood, MD

I hope that everyone’s New Year has gotten off to a great start. I wish all of our members a belated season’s greetings and best wishes in the New Year. I hope to see many of you at the ONS 32nd Annual Congress this year. I’ve started a small savings account to fund my losses in Las Vegas; I’ve never been there before and assume that if I choose to gamble, I will lose. Speaking of gambling, if 15 members of our SIG sign up for the ONS Member-to-Member Mentoring Program, either as mentors or as mentees, the SIG will win a prize. I’ll bet we can achieve this! Here’s the Web site URL for more information: www.ons.org/membership/mentoring/index.shtml. Enrich your life and someone else’s! Please consider becoming an ONS Member-to-Member mentor or mentee.

For our first Cancer Genetics SIG newsletter of 2007, the newsletter team decided to focus on hereditary pancreatic cancer. Cathleen Goetsch, MSN, ARNP, AOCNP, contributed an article about hereditary pancreatic cancer. Cathleen is the hereditary cancer risk consultant at the Virginia Mason Medical Center in Seattle, WA, and we appreciate her time and contribution to the newsletter.

Our newsletter editor, Millie Arnold, RN, BS, OCN®, CCRC, research nurse coordinator at Baylor University Medical Center Dallas, compiled an extensive list of Web references related to pancreatic cancer, both hereditary and nonhereditary forms. In addition, she developed a detailed list of the existing pancreatic cancer registries within the United States. We hope that you find this information useful.

Having spent her summer immersed in all things genetic, Patricia A. Kelly, MS, RN, AOCN®, shares her enthusiasm, trepidation, and wonderful experience attending the National Institute of Nursing Research’s Summer Genetics Institute. DNA sequencing, anyone?

As always, please take a moment to consider contributing to the next newsletter. Write a small article about something you are interested in and think other oncology nurses would find useful. It does not have to be a 3,000-word manuscript. Staying abreast of new information related to genetics and its applications to cancer care is a daunting task. It takes many eyes, ears, and brains to keep track of it all. Consider becoming involved in the next newsletter.

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 February 2007

Pancreatic Cancer: A Marker of Inherited Cancer Risk

Cathy Goetsch, MSN, ARNP, AOCNP
Seattle, WA

Pancreatic cancer is a rare disease, with less than 34,000 cases diagnosed each year in the United States. Family history is a risk factor in up to 30% of cases. About 10% of pancreatic cancer cases are thought to be related to heritable, single-gene mutations. Pancreatic cancer is associated with several hereditary cancer syndromes, including hereditary breast (BRCA1, BRCA2), hereditary melanoma (CDKN2A), Peutz-Jeghers syndrome (STK11/LKB2), Lynch syndrome (hereditary nonpolyposis colorectal cancer--MLH1, MSH2, MSH6), hereditary pancreatitis (PRSS1), familial adenomatous polyposis (APC), cystic fibrosis (CFTR), ataxia telangiectasia (ATM), and von Hippel-Lindau syndrome (VHL). No official definition exists for hereditary pancreatic cancer; however, it should be suspected in families with two first-degree relatives with pancreatic adenocarcinoma or in families with three or more first- and second-degree relatives affected with pancreatic adenocarcinoma.

No known cancer screening strategy has demonstrated the ability to alter the natural history of the disease. Thus, individuals from hereditary pancreatic cancer kindreds are encouraged to participate in prospective clinical screening trials for pancreatic cancer.

BRCA2 mutations are the most commonly identified mutations in familial pancreatic cancer families. Murphy et al. (2002) reported that 17% of patients with pancreatic cancer and two or more family members with pancreatic cancer carry a germline BRCA2 mutation. In addition, 12% of families with two or more first-degree relatives with pancreatic cancer carry deleterious germline mutations in BRCA2 (Hahn et al., 2003). BRCA2 mutations also have been reported in 5%-10% of patients with pancreatic cancer without a family history of pancreatic disease.

Pancreatic cancer also is seen in families with STK11 mutations. This tumor suppressor gene is implicated in Peutz-Jeghers syndrome. Other manifestations of Peutz-Jeghers syndrome are multiple gastrointestinal hamartomatous polyps (especially in the small bowel); characteristic melanocytic pigmented spots on the lips, buccal mucosa, fingers, and toes; and cancer of the stomach, colon, lung, breast, uterus, and ovaries, as well as melanoma and sex cord tumors.

Several of the heritable colon cancer syndromes have pancreatic cancer as a manifestation. Pancreatic cancer in the setting of other gastrointestinal (GI) cancers in close family members, especially if onset is early, should suggest hereditary risk. Hereditary non-polyposis colon cancer (or Lynch Syndrome) is the most common inherited colon cancer syndrome. Individuals with this syndrome are at increased risk for developing early-onset cancers and cancers in multiple organs. In addition to the most common tumors (colon and uterine), individuals from families with known HNPCC mutations have an increased risk of developing cancers of the GI tract including stomach, gallbladder, small intestines, and pancreas. Risk of pancreatic cancer in these families is reported to be 3%-15%. Pancreatic cancer also has been associated with familial adenomatous polyposis (FAP gene on 5q21) and juvenile polyposis coli (Smad4 & BMPR1A genes) but is more rarely associated with these syndromes.

Familial gastric cancer, which has been associated with abnormalities on the CDH1 gene on chromosome 16q22, is a rare disorder with pancreatic cancer reported in some affected individuals.

Other genes that have been reported to be associated with pancreatic cancer in families are also related to familial melanoma. Several genes have been identified in these families including P16 (9q21), CMM1 (1p36) and CDKN2A (12q14). These mutations also raise the risk of multiple moles, dysplastic nevi syndrome, and astrocytoma. People with mutations associated with familial melanoma have a 90% risk of developing melanoma before age 35. The precise risk of pancreatic cancer in this setting is unknown but is considered to be much lower than the risk of melanoma.

Another rare but well-described inherited cancer risk syndrome with an elevated risk of pancreatic cancer is Li-Fraumeni (and Li-Fraumeni-like) Syndrome. About 50% of families with this syndrome have mutations on the p53 gene (on chromosome 17p13). These families have a wide range of cancers with a young age of onset. A diagnosis of a sarcoma is a sentinel marker that identifies the syndrome clinically. Breast cancer, lung cancer, acute leukemia, adrenocortical cancer, melanoma, and stomach, colon, and brain tumors are seen in addition to pancreatic cancer. Pancreatic islet tumors and gastromas are nonmalignant but life-threatening manifestations of multiple endocrine neoplasia type 1 (MEN 1 on 11q13) and von Hippel-Lindau Syndrome (VHL)--both rare, inherited cancer syndromes.

Although pancreatic tumors, both malignant and benign, are rare occurrences in general, they may be viewed as a red flag for an inherited cancer syndrome. Careful assessment of the family history is a key component in the identification of individuals at high genetic risk for pancreatic cancer.

Hahn, S.A., Greenhalf, B., Ellis, I., Sina-Frey, M., Rieder, H., Korte, B., et al. (2003). BRCA2 germline mutations in familial pancreatic carcinoma. Journal of the National Cancer Institute, 95, 214-221.

Murphy, K.M., Brune, K.A., Griffin, C., Sollenberger, J.E., Petersen, G.M., Bansal, R., et al. (2002). Evaluation of candidate genes, MAP2K4, MADH4, ACVR1B and BRCA2 in familial pancreatic cancer: Deleterious BRCA2 mutation in 17%. Cancer Research, 62, 3789-3793.

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Special Interest Group Newsletter February 2007

Pancreatic Cancer Web Site Resources

Millie Arnold, RN, BS, OCN®, CCRC
Dallas, TX

Numerous excellent hospital-based Web sites are available that provide general cancer information, but the following sites are specific to pancreatic cancer.
  • The Pancreatic Cancer Action Network (www.pancan.org) is a nonprofit organization established in 1999 as the first national patient advocacy organization for pancreatic cancer. This site provides professional and patient information about pancreatic cancer. This Web site also lists resources for state support groups, pancreatic registries, and public policy.
  • The National Pancreas Foundation (www.pancreasfoundation.org) is a private nonprofit organization established to support funding of research related to pancreatic diseases.
  • PancreasWeb (www.pancreasweb.com) is an information source for clinicians who are interested in both research and clinical peer-reviewed scientific articles.

General Cancer Information Web Sites

  • One Voice Against Cancer (OVAC, www.ovaconline.org) began in 2000 as a collaboration of national nonprofit organizations representing millions of Americans. OVAC is a good resource for professionals and patients.
  • CancerCare (www.cancercare.org) provides professional and patient support services including counseling, education, financial assistance, and practical help for individuals with cancer. CancerCare was founded in 1944 and has several partnerships with other national public service organizations, such as the Centers for Disease Control and Prevention (CDC).
  • The CDC Division of Cancer (www.cdc.gov/cancer) Web site provides a wide range of disease-specific information as well as site-specific cancer profiles that informs of trends specific to an individual state and county.
  • The Oncology Group (www.cancernetwork.com) was established in 1982 and provides cancer information for oncology professionals.
  • The National Institutes of Health National Cancer Institute (www.cancer.gov) was established under the National Cancer Institute Act of 1937 and provides patient and professional information for all forms of cancer.
  • The American Cancer Society (www.cancer.org), established in 1946, provides information about all forms of cancer. Information specific to pancreatic cancer is available for patients and professionals.
  • People Living With Cancer (www.plwc.org) was established in 2002 and is a patient and professional information Web site of the American Society of Clinical Oncology.
  • ClinicalTrials.gov (www.clinicaltrials.gov) provides updated information about federally and privately supported human clinical trials.
  • Care Alliance (www.aircareall.org), established in 1990, is a nationwide association of humanitarian flying organizations that perform community service, such as transporting patients, families, healthcare providers, agency workers, etc., for health care.
U.S. National Pancreatic Cancer Registry Research Resources
PanCAN offers a listing of pancreatic cancer genetic registries around the country along with the requirements for participating.
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Special Interest Group Newsletter February 2007

NIH Fellow, Summer Genetics Institute: Could That Be ME?

Patricia A. Kelly, MS, RN, AOCN®
Dallas, TX

Never in my wildest dreams did I imagine that I would spend a summer at the National Institutes of Health (NIH) genetics lab extracting DNA from cells. I have always enjoyed working with hereditary cancer syndrome families and saw genetics as the future of health care. But to be on the cutting edge and go to the NIH, not a chance . . . or was there?

When I received a brochure from the International Society of Nurses in Genetics about the National Institute of Nursing Research Summer Genetics Institute (SGI) program, I knew this was not a typical continuing education course. The program description was daunting:

The summer genetics institute is a competitive two-month, intensive summer research training program designed to provide a foundation in genetics for use in research and clinical practice. The purpose of SGI is to develop and expand the research capability among graduate students and faculty in schools of nursing, and to develop and expand the basis for clinical practice in genetics among advanced practice nurses. The program features both classroom and laboratory components and participants spend two months in residence at the National Institutes of Health, Bethesda, Maryland. Graduates of the program receive twelve hours of doctoral college credit for the course. (National Institute of Nursing Research, 2006)
I worked long hours on the application and my research proposal. I sought help from colleagues and requested the required recommendation letters. In March 2006, I received my acceptance notice. I was one of 19 nurses from across the United States selected to attend SGI! I was excited, a little scared, and overwhelmed. It had been 10 years since I had been an official college student. Could I do it?

I arrived in Bethesda on Sunday, June 4, met my suitemate, and began to settle into residence living. I joined a cadre of 18 postdoctoral and doctoral nursing students. (Yes, I was the only advanced practice nurse.) We hit the ground running on Monday morning and did not stop until 5 pm on Saturday upon completing cell culture lab. The summer genetics program (also known as gene boot camp) was a total immersion in molecular biology and genetics. There were five binders of materials to digest and three genetic texts to read. The SGI lecturers represented the best in their field, including nurses, physicians, geneticists, and scientists from the NIH and surrounding universities. We were challenged with take-home exams and genetics laboratory procedures (all were new for me).

As we waited for the bus or metro in the morning, we were easily identifiable: 18 women and 1 man, ranging in age from 24 to 60 years old, wearing casual clothes and a backpack stuffed with notebooks, references, a sack lunch, metro pass, water bottle, and, of course, an umbrella. Our backpacks were so full that if we added a bed roll, we could pass for mature travelers in a Eurorail advertisement. We frequently walked home from the NIH (four miles), as this was an excellent way to unwind from a long day in the classroom or lab.

The two months passed quickly. I worked hard to develop my proposal, “Genetic Variants and Osteoporosis in Early Stage Breast Cancer,” into a scientific paper. The SGI faculty and geneticist guided us as we identified key concepts and wrote proposals that were realistic and appropriate for grant funding.

On July 28, we celebrated our graduation with a dinner at Georgetown University’s President’s Library. We had completed the SGI course, but, in reality, our journey had just begun. In her graduation address, Patricia Grady, PhD, RN, FAAN, director of the National Institute of Nursing Research, challenged SGI participants to expand the current body of nursing and genetics knowledge through research and publication.

Upon returning to Dallas, I have been awed by the support from my nursing colleagues. My fellow nurses have encouraged me to proceed with the research proposal and potential funding resources. I am scheduled to report on the SGI program for area nursing research committees and have developed a genetics “lunch and learn” program for the worksite. In October 2006, I presented a research poster for the National Congress on the State of the Science in Nursing Research in Washington, DC. The SGI has opened doors and helped me to establish contacts within the nursing and scientific community.

I am now challenged to develop and complete my proposed research. I have a responsibility to give back to my profession and open doors for other nurses who are interested in genetics and research. As I look for direction, I find wisdom in this quote: “Stand before it and there is no beginning. Follow it and there is no end.”--Lao-Tzu

For more information about SGI and the application process, go to http://ninr.nih.gov/research/summer_institutes/summer_genetics_institute/.

National Institute of Nursing Research. (2006). Summer Genetics Institute June 5-July 28, 2006 [Brochure]. Bethesda, MD: Author.

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Special Interest Group Newsletter February 2007

Cancer Genetics and Genomics: A Workshop for Oncology Nurses

The National Cancer Institute’s Center for Cancer Research is offering an educational program designed for oncology nurses with a limited knowledge base in genetics and genomics.

Date: May 2-3, 2007
Location: Lister Hill Auditorium, National Institutes of Health, Bethesda, MD
Sponsor: Center for Cancer Research, National Cancer Institute
Fee: No registration fee
Registration site: www.cancermeetings.org/genetics
Contact hours: 16.7 contact hours will be awarded for two-day attendance

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Special Interest Group Newsletter February 2007

ISONG, ANA Update Genetics Text

The International Society of Nurses in Genetics (ISONG) and the American Nurses Association (ANA) have published an updated version of Genetics/Genomics Nursing: Scope and Standards of Practice (ANA, 2007). For more information, go to http://nursingworld.org/books or call 800-637-0323.


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Special Interest Group Newsletter February 2007

Cancer Genetics SIG Welcomes New Members


Gita Giddens

Nancy Ginder

Caralyn Henderson

Regina Hinkle

Mary Jean Houlahan

Michelle Meertens

Alyssa Taylor

Grovetown, GA

Stanhope, NJ

Keller, TX

Oak Ridge, TN

Stuart, FL

Portsmouth, VA

Chesterfield, VA

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Special Interest Group Newsletter February 2007

Membership Information

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Join a Virtual Community
A great way to stay connected to your SIG is to join its Virtual Community. It's easy to do so. All you will need to do is

  • Log on to the ONS Web site (www.ons.org).
  • Select "Membership" from the tabs above.
  • Then, click on "Chapters, SIGs & Virtual Communities."
  • Scroll down to "Special Interest Groups (SIG) Virtual Community" and click.
  • Now, select "Find a SIG."
  • Locate and click on the name of your SIG from the list of all ONS SIGs displayed.
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  • Type the required information into the text fields as prompted.
  • Click "Join Group" (at the bottom right of the text fields) when done.
Special Notices
  • If you already have log-in credentials generated from the ONS Web site, use this information instead of attempting to generate new information.
  • If you created log-in credentials for the ONS Web site and wish to have different log-in information, you will not be able to use the same e-mail address to generate your new credentials. Instead, use an alternate e-mail address.

Subscribe to Your SIG's Virtual Community Discussion Forum
All members are encouraged to participate in their SIG's discussion forum. This area affords the opportunity for exchange of information between members and nonmembers on topics specific to all oncology subspecialties. Once you have your log-in credentials, you are ready to subscribe to your SIG's Virtual Community discussion forum. To do so,

  • 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.
  • Now, select "Featured Discussion" from the left drop-down menu.
  • Locate and select "Subscribe to Discussion" inside the "Featured Discussion" section.
  • Go to "Subscription Options" and select "Options."
  • When you have selected and entered all required criteria, you will receive a confirmation message.
  • Click "Finish."
  • You are now ready to begin participating in your SIG's discussion forum.
Participate in Your SIG's Virtual Community Discussion Forum
  • First, log in. (This allows others to identify you and enables you to receive notification [via e-mail] each time a response or new topic is posted.)
  • Click on "Discussion" from the top title bar.
  • Select "Featured Discussion" from the left drop-down menu.
  • 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. This appears above the posted announcements section.
  • Select the "Click Here" feature, which will take you to a link to subscribe.
  • Once the "For Announcement Subscription Only" page appears on screen, select how you wish to receive your announcements.
    • As individual e-mails each time a new announcement is posted
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    • 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."
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  • This will bring up a listing of your SIG's posted announcements. Click on "My SIG's Page" to view all postings in their entirety or to conclude the registration process and begin browsing.
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Special Interest Group Newsletter February 2007

SIG Name SIG Officers

Jennifer Loud, RN, MSN, CRNP
Rockville, MD

Judith Much, RN, AOCN®
Ottsville, PA


Newsletter Editor
Mildred (Millie) Arnold, RN, OCN®, CCRC
Mesquite, TX

Newsletter Co-Editors
Patricia B. Herman, MSN, RN, AOCN®
Bethlehem, PA

Patricia Kelly, RN, MS, AOCN®
Dallas, TX

ONS Publishing Division Staff
Amy Nicoletti, BA
Copy Editor

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 Administrative Assistant Carol DeMarco at cdemarco@ons.org or 866-257-4ONS, ext. 6230.

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 Administrative Assistant Carol DeMarco at cdemarco@ons.org or 866-257-4ONS, ext. 6230.

To view past newsletters, click here.

ONS Membership/Leadership Team Contact Information

Angie Stengel, MS, CAE, Director of Membership/Leadership

Diane Scheuring, MBA, CMP, Manager of Member Services

Carol DeMarco, Membership/Leadership Administrative Assistant

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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