Volume 8, Issue 3, November 2004   
     
Message From the Coordinator
Genetics in Oncology Practice


Judith (Judie) Kehs Much, CRNP, AOCN®, APRN-BC
Allentown, PA
Judith_K.Much@lvh.com


About 10 months ago, as coordinator-elect for the Cancer Genetics SIG, I called Agnes Masny, RN, MPH, MSN, (then coordinator) to tell her that I would be changing jobs. I felt I should resign my office in the SIG, as I would not be providing genetic counseling in my new role as oncology NP on an inpatient unit. Agnes, who is my personal hero for many different reasons and who has provided me with much of the education and many of the opportunities in genetics, became quiet on the phone and then said, “Why, Judie? Aren’t you going to be providing direct care to cancer patients?” When I again explained my new role at a new location, I lamented that I would not be doing counseling and voiced concern about losing knowledge and skill as a result of being out of the field. Agnes quietly but firmly reminded me that “cancer genetics and risk counseling are not just about testing.” Hmmm. Yes, she had me there. I agreed to stay in the position of coordinator-elect and now coordinator, although I was not totally convinced that I would not be drowning in a sea of terms and information that would be lost to me forever, as I would be “operating in a different sphere.”

How wrong I have been! Within the first few weeks in my new job in an area where there are fewer cancer genetic professionals, individuals continued to call me to discuss their risk, having gotten my name from Web sites. The first day on the inpatient unit, I was confronted with the case of a young woman, married with children, who failed her induction chemotherapy for leukemia. An overlooked fact was that she had four first-degree relatives with hematologic malignancies. Because I had the resources at my fingertips, I was able to provide her and her family with the names of investigators looking at familial clustering of hematologic malignancies, something that might benefit her children or her siblings. Shortly thereafter, I referred a young woman dying of colorectal cancer (diagnosed at the age of 40) to the genetic counselor for testing or banking of blood when I learned she had also been diagnosed with endometrial cancer at the age of 28. Even though she had been a patient at the facility for about eight years, the identification of her risk potential had gone unnoticed. Her two young-adult sons might benefit from knowing how frequently they need to be screened. Almost daily in one of our tumor study group meetings, I have become the “nudge” who is constantly asking, “Is there a family history?” or “Has that individual been referred for testing?” And finally, with each and every pathology report, on an inpatient hematology/oncology unit where many patients are being treated for leukemia, I am called on?no, I am responsible—to interpret results of cytogenetics for patients and families. Although I am no longer doing formalized genetic counseling in a comprehensive cancer center as part of a comprehensive risk assessment program, I daily provide genetic counseling, guidance, and prognostication, as must each and every oncology nurse who is working with patients.
 

 
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  November 2004
 
   


Message From the Coordinator
Genetics in Oncology Practice


Judith (Judie) Kehs Much, CRNP, AOCN®, APRN-BC
Allentown, PA
Judith_K.Much@lvh.com


About 10 months ago, as coordinator-elect for the Cancer Genetics SIG, I called Agnes Masny, RN, MPH, MSN, (then coordinator) to tell her that I would be changing jobs. I felt I should resign my office in the SIG, as I would not be providing genetic counseling in my new role as oncology NP on an inpatient unit. Agnes, who is my personal hero for many different reasons and who has provided me with much of the education and many of the opportunities in genetics, became quiet on the phone and then said, “Why, Judie? Aren’t you going to be providing direct care to cancer patients?” When I again explained my new role at a new location, I lamented that I would not be doing counseling and voiced concern about losing knowledge and skill as a result of being out of the field. Agnes quietly but firmly reminded me that “cancer genetics and risk counseling are not just about testing.” Hmmm. Yes, she had me there. I agreed to stay in the position of coordinator-elect and now coordinator, although I was not totally convinced that I would not be drowning in a sea of terms and information that would be lost to me forever, as I would be “operating in a different sphere.”

How wrong I have been! Within the first few weeks in my new job in an area where there are fewer cancer genetic professionals, individuals continued to call me to discuss their risk, having gotten my name from Web sites. The first day on the inpatient unit, I was confronted with the case of a young woman, married with children, who failed her induction chemotherapy for leukemia. An overlooked fact was that she had four first-degree relatives with hematologic malignancies. Because I had the resources at my fingertips, I was able to provide her and her family with the names of investigators looking at familial clustering of hematologic malignancies, something that might benefit her children or her siblings. Shortly thereafter, I referred a young woman dying of colorectal cancer (diagnosed at the age of 40) to the genetic counselor for testing or banking of blood when I learned she had also been diagnosed with endometrial cancer at the age of 28. Even though she had been a patient at the facility for about eight years, the identification of her risk potential had gone unnoticed. Her two young-adult sons might benefit from knowing how frequently they need to be screened. Almost daily in one of our tumor study group meetings, I have become the “nudge” who is constantly asking, “Is there a family history?” or “Has that individual been referred for testing?” And finally, with each and every pathology report, on an inpatient hematology/oncology unit where many patients are being treated for leukemia, I am called on?no, I am responsible—to interpret results of cytogenetics for patients and families. Although I am no longer doing formalized genetic counseling in a comprehensive cancer center as part of a comprehensive risk assessment program, I daily provide genetic counseling, guidance, and prognostication, as must each and every oncology nurse who is working with patients.

My new “employer” is a major teaching community hospital with an excellent cancer program. The oncology nurses caring for the patients I have mentioned are extremely skilled in a multitude of areas; however, the genetic revolution has not yet reached the bedsides of all of the patients we touch. As the new coordinator for the Cancer Genetics SIG, I ask all of you, the members, to help lead the way for our other colleagues in oncology nursing. Each one of us must be a teacher, a mentor, and a guide to provide for the translation of our knowledge of genetics into practice. Identification of cancer syndromes, interpretation of laboratory tests, and referral to other genetic providers are mandatory parts of today’s oncology nursing practice. As for Agnes Masny, who has guided many of us on our “genetic” journey, we love you! Thanks for all you have done and for the reminder that “cancer genetics is not just testing.”
 
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Special Interest Group Newsletter  November 2004
 
   


Message From the Newsletter Editor
Genetics Short Course


Marilyn Kile, RN, MSN, APRN, AOCN®
Kearney, NE
marilynkile@catholichealth.net


While in Anaheim, CA, for the ONS Congress in May, I had the opportunity to participate in the Genetics Short Course for Cancer Nurses. I have previously taken the basic and advanced Genetic Cancer Risk Counseling courses at Fox Chase Cancer Center. The information presented at the short course was complementary to the Fox Chase programs, not a repeat of the same information. The faculty for the program presented the information in a format that was both interesting and easy to understand. Participants were provided with a stipend after completing the course and post-test to offset the cost of transportation and hotel while attending the course. Participants were asked to present a four-hour workshop to disseminate the information learned in the course to colleagues at the local level. Materials for the workshop were provided as a “tool kit” and included all the handouts, slides, script, registration forms, brochures, and contact hours. ONS was extremely helpful in providing these materials and answering any questions. If you have not yet applied to take this course, I urge you to review the information on when and where the next Genetics Short Course will be held. The Web site is provided in this newsletter.

I want to draw your attention to the number of Cancer Genetics SIG members who authored articles in a featured issue of Seminars in Oncology Nursing. The August issue featured a cancer genetics theme, and many of our SIG members contributed to that issue. Congratulations on a job well done.

Thanks to co-editors Patricia Herman, MSN, RN, AOCN®, and Patricia Kelly, RN, MS, AOCN®, for assisting in generating story ideas for the newsletter, obtaining or writing stories, and editing the material.

 
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Special Interest Group Newsletter  November 2004
 
   


Genetics Short Course

Patricia Kelly, RN, MS, AOCN®
Dallas, TX
PatriciaKelly@TexasHealth.org


“To teach is to learn twice.” -Joseph Joubit

I was fortunate to attend the fall 2003 ONS Genetics Short Course. I loved the course and gained much from the content and interaction with participants. Before applying, I noted that there were course requirements, the most significant being that attendees were to:

“Disseminate the knowledge gained in the Genetics Short Course for Cancer Nurses by delivering a four-hour workshop on basic and cancer genetics to other nurses in your local area, within six months of certification.”
I remember contemplating the requirement. Thoughts ran through my head: “I like to teach; this shouldn’t be a problem”; “A four-hour course may be difficult to schedule”; and “Will there be enough nurses interested in basic genetics to fill a course roster?”

After receiving the course materials and brochure, I approached the local ONS Board. The board was interested, but they had reservations about when to schedule a four-hour course. Their program schedule for the year was already full. We decided upon a Saturday morning in June. An ONS Board member expressed an interest in the course, and she was a godsend. She encouraged me, promoted the course, and registered attendees on the day of the course. ONS provided the template for the course brochure, the handouts, and the CEs. My hospital used the course registration line to register participants, and the course filled quickly, with a waiting list of 15 nurses.

All I had to do was teach the class. The PowerPoint® CD that came with the course materials was excellent, but it was not “my material.” Each slide came with a written explanation, but I still needed to make it my own. Remembering the principles of adult education, I tried to apply the materials to clinical examples (e.g., specific chemotherapy drugs, cytogenetics reports, full sequence reports, de-identified patient scenarios). I made overheads for the clinical applications, incorporated memory techniques for learning difficult words, and used analogies for genetic concepts. The preparation helped the participants, but most importantly, it helped me understand the material. The course evaluations were excellent.

I knew why Dr. Workman had written the grant for the Genetics Short Course with a stipulation that attendees were to share genetics knowledge with nurses in their communities. Not only was the “genetics gospel” being spread, the instructors were becoming stronger experts. “To teach is to learn twice” is a wonderful quote, one that I appreciate in my journey toward becoming a better genetics nurse. Thank you, Dr. Workman and ONS, for providing the structure and incentives for oncology nurses to teach genetics.

“Cancer & Genetics: What’s the Connection?” is a course offered as an outcome of the ONS Cancer Genetics Short Course, sponsored by a grant from the National Cancer Institute to the Oncology Nursing Society—grant #1R25CA9346, Principal Investigator, M. Linda Workman, RN, PhD, FAAN.
 
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Special Interest Group Newsletter  November 2004
 
   


Legislation: Genetic Non-Discrimination


Legislation: Genetic Non-Discrimination
The House of Representatives began committee hearings on July 22, 2004, on Genetic Non-Discrimination Legislation. Hearing testimony can be accessed at http://edworkforce.house.gov/hearings/108th/eer/health072204/wl072204.htm

 
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Special Interest Group Newsletter  November 2004
 
   


News From the National Human Genome Research Institute (NHGRI)

Jean Jenkins, PhD, RN, FAAN
Bethesda, MD
Jean.Jenkins@nih.gov


Advances in Genomics to Biology
NHGRI Adds 18 Organisms to Sequencing Pipeline Strategic Mix Includes Orangutan, Elephant, Cat, Rabbit, and Lamprey


“Science tells us that the most effective approach we currently have to identify the essential functional and structural components of our own genome is to compare it with the genomes of other organisms. With each new genome that we sequence, we move closer to the goal of finding all of the crucial elements of the human genome involved in development, health, and disease,” said Mark S. Guyer, PhD, director of NHGRI’s Division of Extramural Research. “We hope to accelerate that process with our new sequencing strategy that identifies the organisms, or sets of organisms, with the greatest potential to fill gaps in our knowledge.” For more details, visit http://www.genome.gov/12511858

Dog Genome Assembled
A team led by Kerstin Lindblad-Toh, PhD, of the Broad Institute of MIT and Harvard, Cambridge, MA, and Agencourt Bioscience Corp., MA, successfully assembled the genome of the domestic dog (Canis familiaris). The breed of dog sequenced was the boxer. For more details, see http://www.genome.gov/12511476

Advances in Genomics to Health
New Directions for Sickle Cell Therapy in the Genome Era Conference Report

A meeting was held Nov. 19-21, 2003, at the NIH with the goal of exploring how new tools and techniques of genomics might be applied in the study of sickle cell disease. A summary of the conference and recommendations can be viewed at http://www.genome.gov/Pages/About/
NACHGR/2004NACHGRAgenda/TabRSickleCellConferenceSummary.pdf
 

Location of Potential Familial Lung Cancer Gene Discovered

An interdisciplinary consortium consisting of 12 research institutions and universities, including the National Cancer Institute (NCI) and the NHGRI, NIH, identified a major lung cancer susceptibility region on a segment of chromosome 6. The findings appear in American Journal of Human Genetics, September 2004 issue. Another interesting discovery the team made involved the effects of smoking on cancer risk for carriers and noncarriers of the predicted familial lung cancer gene. They found that in noncarriers, the more they smoked, the greater their risk of cancer. In carriers, on the other hand, any amount of smoking increased lung cancer risk. These findings suggest that smoking even a small amount can lead to cancer for individuals with inherited susceptibility. See http://www.genome.gov/12511792

Innovative Efforts Target Epigenetics, Molecular Imaging
Johns Hopkins, Harvard Named Centers of Excellence in Genomic Science

Two new grants to establish Centers of Excellence in Genomic Science have been awarded to Harvard Medical School in Boston and the Johns Hopkins University School of Medicine in Baltimore. “These centers represent two more key building blocks in our effort to lay the groundwork for new genomic approaches to the study of human biology and disease,” said NHGRI Director Francis S. Collins, MD, PhD. Details at http://www.genome.gov/12511159

Advances in Genomics to Society
Request for Application, Intellectual Property Rights in Genetics and Genomics

A new request for application (RFA) was recently released by NHGRI to “encourage the study of the role of laws and policies regarding intellectual property rights in genetics and genomics research and development, and the effect of such laws and policies on progress in these fields and on commercialization, drug development, health care delivery, and the public health.” Letters of intent are due October 21, 2004. More information is available at http://grants1.nih.gov/grants/guide/rfa-files/RFA-HG-04-004.html

Information for any of the stories above can be found at www.genome.gov



 
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Special Interest Group Newsletter  November 2004
 
   


National Coalition for Health Professional Education in Genetics (NCHPEG)/Genetics Resources on the Web (GROW)


NCHPEG is always looking for genetics programs to review. Have you seen or developed an Educational Genetic Program that they should know about? See the Web site for the NCHPEG Educational Program Submission Form. More than 50 programs have been posted, with 16 reviews that provide additional information.
Many of you know that for several years GROW has been working toward the important goal of creating and maintaining an effective search capability that would interrogate simultaneously a number of quality Web sites for information about genetics. Thanks to the logistical leadership now provided by NCHPEG, in conjunction with the technical support of RSi Communications, that day has dawned. A formal launch has occurred. Visit www.nchpeg.org for more information, and go to http://search.info.nih.gov/grow to choose GROW!



 
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Special Interest Group Newsletter  November 2004
 
   


New Enhancements Increase the Sensitivity of Genetic Testing for Hereditary Colon Cancer

Alicia Parlanti, MS
Bergenfield, NJ
aparlant@myriad.com


(Mention of Myriad Genetic Laboratories does not imply endorsement by the Oncology Nursing Society.)

Southern Blot Analysis
Full sequencing is considered the “gold standard” in genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) and familial adenomatous polyposis (FAP). However, this technology cannot identify large genomic rearrangements in the genes responsible for these syndromes. Southern Blot analysis is a technique that allows for detection of these large rearrangements.

Recent literature reports that large rearrangements may account for a significant percentage of mutations in MLH1 and MSH2, the primary genes responsible for HNPCC. Data from these studies show that up to 32% of mutations found in suspected HNPCC families are large rearrangements not detectable by standard sequencing technology (Charbonnier et al., 2002; Gille et al., 2002; Lynch et al., 2004; Nystrom-Lahti et al., 1995; Taylor, Charlton, Burn, Sheridan, & Taylor, 2003; Wagner et al., 2003; Wang et al., 2002; Wijnen et al., 1998). As for APC, the gene responsible for FAP, there have been case reports in the literature of specific rearrangements in this gene (Cao, Eu, Seow-Choen, Zhao, & Cheah, 2001; Friedl et al., 2001; Gismondi et al., 1998; Halling et al., 1999; Ponz de Leon et al., 2001; Su et al., 2000). One study demonstrated that out of 30 germ-line mutations detected in patients with FAP, 4 (14%) were large rearrangements not detectable by standard sequencing technology (Su et al.).

MYH
Patients with multiple colorectal adenomas, found during one or more exams, are at risk to carry biallelic MYH mutations. When a patient has biallelic MYH mutations, both copies of the MYH gene (one inherited from the mother, the other inherited from the father) are not functioning properly and this causes multiple adenomas, sometimes associated with colorectal cancer (CRC). Since both copies of the MYH gene must have mutations in order for a patient to develop the phenotype, this is classified as autosomal recessive inheritance. Because of this pattern of inheritance, patients often have little or no family history of colon adenomas or CRC. They may also present with extracolonic disease similar to FAP, including duodenal polyposis and congenital hypertrophy of the retinal pigmented epithelium (CHRPE) (Sieber et al., 2003).

Biallelic MYH mutations may be a more common cause of the multiple adenoma (attenuated FAP) phenotype than APC mutations. Biallelic MYH mutations have also been found in some patients with a classic FAP presentation (greater than 100 cumulative adenomas) (Sieber et al., 2003). Studies have reported biallelic MYH mutations in patients with as few as four colorectal adenomas. Limited data suggests that approximately 1%–3% of colorectal cancer cases can be ascribed to biallelic MYH mutations, depending on the population examined (Fleischmann et al., 2004).

Patients with multiple colorectal adenomas (with or without associated CRC) and no clear evidence of dominant transmission (i.e., no history of adenomas or CRC in parents or children) should be offered genetic testing for MYH (Sieber et al., 2003). Medical management is similar to patients with classic or attenuated FAP, including regular screening by colonoscopy and regular endoscopy of the upper GI tract (Sieber et al.).

Genetic Testing
As of August 1, 2004, Myriad Genetic Laboratories now offers MYH analysis, as well as Southern Blot analysis for large rearrangements in MLH1/MSH2 and APC, that will increase the sensitivity of genetic testing for hereditary colon cancer.

Comprehensive COLARIS® testing (for diagnosis of HNPCC) now includes Southern Blot analysis of the MLH1 and MSH2 genes. Comprehensive COLARIS APSM testing (for diagnosis of FAP) now includes Southern Blot analysis of the APC gene, as well as an MYH mutation panel. The MYH mutation panel detects two mutations (Y165C and G382D) that are thought to be most common in patients of European ancestry. If only one of these mutations is detected, MYH sequencing automatically will be included at no additional charge.

The MYH panel, MYH sequencing, and Southern Blot analysis for MLH1/MSH2 and APC may also be ordered individually. Please contact your local representative for details on pricing and logistics. Alternatively, you may contact Myriad’s Customer Service Department or Medical Services Department directly at 1-800-4-MYRIAD.

Myriad, the Myriad logo, COLARIS®, and COLARIS APSM are either trademarks or registered trademarks of Myriad Genetics in the United States and other jurisdictions.

This information is provided to help answer questions with respect to cancer risks, hereditary cancer risks, and predispositional cancer testing. It is general in nature and is not intended to provide a comprehensive, definitive analysis of specific risk factors for cancer or hereditary cancer risks. The information provided herein should not be relied upon but rather should be taken into consideration with other medical and research information regarding cancer risks, hereditary cancer risks, and predispositional cancer testing and risk factors.

References
Cao, X., Eu, K.W., Seow-Choen, F., Zhao, Y., & Cheah, P.Y. (2001). Topoisomerase-I- and Alu-mediated genomic deletions of the APC gene in familial adenomatous polyposis. Human Genetics, 108, 436-442.

Charbonnier, F., Olschwang, S., Wang, Q., Boisson, C., Martin, C., Buisine, M.P., et al. (2002). MSH2 in contrast to MLH1 and MSH6 is frequently inactivated by exonic and promoter rearrangements in hereditary nonpolyposis colorectal cancer. Cancer Research, 62, 848–853.

Fleischmann, C., Peto, J., Cheadle, J., Shah, B., Sampson, J., & Houlston, R.S. (2004). Comprehensive analysis of the contribution of germline MYH variation to early-onset colorectal cancer. International Journal of Cancer, 109, 554–558.

Friedl, W., Caspari, R., Sengteller, M., Uhlhaas, S., Lamberti, C., Jungck, M., et al. (2001). Can APC mutation analysis contribute to therapeutic decisions in familial adenomatous polyposis? Experience from 680 FAP families. Gut, 48, 515–521.

Gille, J.J., Hogervorst, F.B., Pals, G., Wijnen, J.T., van Schooten, R.J., Dommering, C.J., et al. (2002). Genomic deletions of MSH2 and MLH1 in colorectal cancer families detected by a novel mutation detection approach. British Journal of Cancer, 87, 892–897.

Gismondi, V., Bafico, A., Biticchi, R., Pedemonte, S., Di Pietri, S., Ponz de Leon, M., et al. (1998). 310 basepair APC deletion with duplication of breakpoint (439ins15del310) in an Italian polyposis patient. Human Mutation, (Suppl. 1), S220–S222.

Halling, K.C., Lazzaro, C.R., Honchel, R., Bufill, J.A., Powell, S.M., Arndt, C.A., et al. (1999). Hereditary desmoid disease in a family with a germline Alu I repeat mutation of the APC gene. Human Heredity, 49, 97–102.

Lynch, H.T., Coronel, S.M., Okimoto, R., Hampel, H., Sweet, K., Lynch, J.F., et al. (2004). A founder mutation of the MSH2 gene and hereditary nonpolyposis colorectal cancer in the United States. JAMA, 291, 718–724.

Nystrom-Lahti, M., Kristo, P., Nicolaides, N.C., Chang, S.Y., Aaltonen, L.A., Moisio, A.L., et al. (1995). Founding mutations and Alu-mediated recombination in hereditary colon cancer. Nature Medicine, 1, 1203–1206.

Ponz de Leon, M., Varesco, L., Benatti, P., Sassatelli, R., Izzo, P., Scarano, M.I., et al. (2001). Phenotype-genotype correlations in an extended family with adenomatosis coli and an unusual APC gene mutation. Diseases of the Colon and Rectum, 44, 1597–1604.

Sieber, O.M., Lipton, L., Crabtree, M., Heinimann, K., Fidalgo, P., Phillips, R.K., et al. (2003). Multiple colorectal adenomas, classic adenomatous polyposis, and germ-line mutations in MYH. New England Journal of Medicine, 348, 791–799.

Su, L.K., Steinbach, G., Sawyer, J.C., Hindi, M., Ward, P.A., & Lynch, P.M. (2000). Genomic rearrangements of the APC tumor-suppressor gene in familial adenomatous polyposis. Human Genetics, 106, 101–107.

Taylor, C.F., Charlton, R.S., Burn, J., Sheridan, E., & Taylor, G.R. (2003). Genomic deletions in MSH2 or MLH1 are a frequent cause of hereditary non-polyposis colorectal cancer: Identification of novel and recurrent deletions by MLPA. Human Mutation, 22, 428–433.

Wagner, A., Barrows, A., Wijnen, J.T., van der Klift, H., Franken, P.F., Verkuijlen, P., et al. (2003). Molecular analysis of hereditary nonpolyposis colorectal cancer in the United States: High mutation detection rate among clinically selected families and characterization of an American founder genomic deletion of the MSH2 gene. American Journal of Human Genetics, 72, 1088–1100.

Wang, Y., Friedl, W., Sengteller, M., Jungck, M., Filges, I., Propping, P., et al. (2002). A modified multiplex PCR assay for detection of large deletions in MSH2 and MLH1. Human Mutation, 19, 279–286.

Wijnen, J., van der Klift, H., Vasen, H., Khan, P.M., Menko, F., Tops, C., et al. (1998). MSH2 genomic deletions are a frequent cause of HNPCC. Nature Genetics, 20, 326–328.
 
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Special Interest Group Newsletter  November 2004
 
   


Developing a Hereditary Cancer Genetics Consultation Service Utilizing Advanced Practice Nurses

Karen Roesser, RN, MS, AOCN®
Richmond, VA
karen.roesser@hcahealthcare.com

Tracey Tatum, RN, MS, FNP
Richmond, VA
tracey.tatum@hcahealthcare.com


(This was a podium session presented at the Oncology Nursing Society’s 29th Annual Congress in Anaheim, CA, on April 29, 2004.)

Advanced Practice Nurses (APNs) are in a prime position to assume a role in providing cancer genetic services to their patients. The Oncology Nursing Society (ONS) has provided two position statements on this issue. ONS identifies three levels of practice to incorporate genetics into oncology nursing (2002b). The highest level would be the APN who has received specialized genetics training. This nurse would provide assessment, education, counseling, and testing for patients. ONS recognizes the importance of providing informed consent, pre- and post-test counseling, and follow-up by qualified individuals who have received genetics education and training (2002a). Risk assessment counseling and cancer predisposition genetic testing are components of comprehensive cancer care (ONS, 2002a). In accordance with these statements, Tracey Tatum, RN, MS, FNP, and I have developed a hereditary cancer genetics consultation service.

As the oncology clinical nurse specialist and breast cancer coordinator, we have many other duties and responsibilities in addition to providing genetic education and counseling for patients. We have divided the genetic responsibilities so that we each can focus on different hereditary cancers. The breast cancer coordinator focuses on patients at risk for hereditary breast/ovarian cancer, and the oncology clinical nurse specialist follows those patients at increased risk for colon/endometrial cancer. Collectively, we have received our genetic education through the Fox Chase Cancer Center Basic Genetics Course, Advanced Course for Nurses in Genetic Cancer Risk Counseling, Myriad Genetics Lab Course, ONS Genetics Short Course for Cancer Nurses, and the ONS Genetics and Cancer Tool Kit.

To inform the community that we were providing this service, we used several methods of communication. These included letters to physician groups, flyers with physician referral criteria, presentations on cancer genetics to tumor board and physician meetings, nursing presentations (ONS chapter meetings, dinner programs, etc.), programs for the lay community, and healthcare newspaper articles.

The evolution of our service was slow. We found that we had a select group of physicians who would refer to us. Most referrals were for breast or ovarian hereditary cancers. As we do not have a genetics service such as those available in large cancer center genetics programs, we partnered with the referring physician. The following are steps in providing genetic education and counseling.

  1. Call the patients and ask them to obtain information on their family history including first, second, and third generation relatives. A packet of information that would assist the patient in obtaining this history may be sent out prior to the first visit.
  2. Meet with the patient and family and review the family history. If the pedigree has not already been developed, it will be done so now.
  3. Assess the patient’s risk according to the patient/family history.
  4. Provide education on hereditary cancers and testing.
  5. Assess the patient’s decision-making ability.
  6. Submit information to the insurer to determine the patient’s eligibility for insurance coverage for genetic testing.
  7. Notify the patient of insurance eligibility and determine further needs: Patient requests genetic testing, patient has further questions, or the patient does not wish to pursue genetic testing.
  8. If testing is requested, meet with the patient, obtain informed consent, and draw blood for testing.
  9. Collaborate with the referring physician regarding the test results. This communication structure was discussed with the patient prior to genetic testing so the patient was aware this was the communication model of this partnership.
  10. Conduct post-test counseling and disclosure of the results. Sometimes this is done in conjunction with the physician.
  11. Determine the need for further counseling.
  12. Set a follow-up visit at a future date, which frequently includes other family members.
Our two largest referral bases continue to be the medical oncologists (45%) followed by the general surgeons (33%). The number of breast/ovarian patients seen in consultation has increased from three patients in 2000 to 37 patients in 2003; the number of patients seen for increased risk of colon/endometrial cancers has remained the same.

Based upon these numbers, our future plans include providing physician-to-physician education in the area of hereditary risk for colon/endometrial cancers, developing a referral base with a gynecology/oncology nurse practitioner, designing a program brochure, and planning educational genetics programs for nurses and the community.

References
Oncology Nursing Society. (2002a). Cancer predisposition genetic testing and risk assessment counseling. Retrieved October 14, 2004, from http://www.ons.org/publications/positions/CancerPredisposition.shtml

Oncology Nursing Society. (2002b). The role of the oncology nurse in cancer genetic counseling. Retrieved October 14, 2004, from http://www.ons.org/publications/positions/CancerGeneticCounseling.shtml



 
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Special Interest Group Newsletter  November 2004
 
   


Genetic Conferences/Continuing Education


Genetics Short Course for Cancer Nurses

Are You Ready for the Genetics Revolution?

ONS is accepting applications from oncology nurses with an advanced master’s and/or doctoral nursing degree who feel the genetics revolution is happening without them. You are invited to apply by January 3, 2005, for the Genetics Short Course being held March 4–6, 2005, in Pittsburgh, PA. Apply by January 28, 2005, for the Genetics Short Course being held April 30–May 2, 2005, in Orlando, FL. Learn more and obtain an application at http://onsopcontent.ons.org/Meetings/GeneticsSC/geneticsapply.html

17th Annual Conference of ISONG
The 17th annual conference of ISONG (the International Society of Nurses in Genetics) will be held October 23–26, 2004, in Toronto, Canada. The focus is “Genomic Nursing in the 21st Century.” More information is available through the ISONG Web site at www.isong.org

Online Course
The University of Michigan in conjunction with the CDC has an online course, “Six weeks to genomic awareness.” This can be viewed at www.genomicawareness.org
 
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Special Interest Group Newsletter  November 2004
 
   


Cancer Genetics SIG Member Publications


Blazer, K.R., Grant, M., Sand, S.R., MacDonald, D.J., Uman, G.C., & Weitzel, J.N. (2004). Effects of a cancer genetics education programme on clinician knowledge and practice. Journal of Medical Genetics, 41, 518-522.

Calzone, K., & Masny, A. (in press). Genetics and oncology nursing. Seminars in Oncology Nursing.

Greco, K., & Mahon, S. (in press). Common hereditary cancer syndromes. Seminars in Oncology Nursing.

Jacobs, L., & Giarelli, E. (in press). A model of survivorship in cancer genetic care. Seminars in Oncology Nursing.

Jenkins, J. (in press). Genomics: Offering hope for oncology care. Seminars in Oncology Nursing.

Kwitkowski, V., & Daub, J. (in press). Clinical application of genetics in sporadic cancers. Seminars in Oncology Nursing.

Loud, J., & Hutson, S. (in press). The art and science of cancer nursing in the genomic era. Seminars in Oncology Nursing.

Loud, J., & Hutson, S. (in press). Resource appendix: Cancer genetic resources: A guide for nurses and patients. Seminars in Oncology Nursing.

Lowery, K.M. (in press). Legal and ethical issues in cancer genetic nursing. Seminars in Oncology Nursing.

Mock, V., Franakis, C., Davidson, N.E., Ropka, M.E., Pickett, M., Poniatowski, B., et al. (in press). Exercise manages fatigue during breast cancer treatment: A randomized controlled trial. Psycho-Oncology.

Murakami, Y., Okamura, H., Sugano, K., Yoshida, T., Kazuma, K., Akechi, T., et al. (2004). Psychological distress after disclosure of genetic test results regarding hereditary nonpolyposis colorectal carcinoma. Cancer, 101, 395–403.

Rieger, P. (in press). The biology of cancer genetics. Seminars in Oncology Nursing.
Vadaparampil, S.T., Wey, J.P., & Kinney, A.Y. (in press). Psychological aspects of genetic counseling and testing. Seminars in Oncology Nursing.

Vadaparampil, S.T., Ropka, M.E., Stefanek, M., & Croyle, R. (2004). Psychosocial factors and genetic testing for hereditary breast, ovarian and colon cancers: What are we measuring? Familial Cancer.
 
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Special Interest Group Newsletter  November 2004
 
   


SIG Member Awards


Clarissa Cleland was awarded the ONS Foundation Bachelors Scholarship. She is a 1974 diploma graduate, mother of six children, and getting her BSN degree! She states, “I am very grateful for the scholarship and very grateful for the opportunity to go to school.”

Judith Gentry received the New Orleans Rotary Club “Silent Hero” award June 30, 2004. This nomination came from New Orleans District Nurses Association. This is the first time a nurse has received the award. She also received the Louisiana State University Health Sciences Center School of Nursing Faculty “Caring Award.” Students and faculty nominate this award.
 
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Special Interest Group Newsletter  November 2004
 
   


Resources


FORCE (Facing our Risk of Cancer Empowered, Inc.) has put together a generic brochure about hereditary breast and ovarian cancer. For those looking for resources, you can get the brochures and more information about FORCE by visiting www.facingourrisk.org
 
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Special Interest Group Newsletter  November 2004
 
   

New Members


Karen Abbas, RN, MS, AOCN®, Poughkeepsie, NY
Maria Aussendorf, Apollo Beach, FL
Crystal Barrett, BSN, RN, Memphis, TN
Mary Baukus, RN, BS, MA, MS, Battle Creek, MI
Cecelia Bellcross, MS, CGC, Madison, WI
Florence Buenconsejo, RN, ARNP, MSN, OCN®, Miami Shores, FL
Shelley Choate, LPN, Hennessey, OK
Karen Collier, RN, OCN®, Bakersfield, CA
Debra Crain, RN, BSN, Burnsville, NC
Marlise Diemel, RN, Wilmington, NC
Susan Ely, RN, MSN, Pittsburgh, PA
Cheryl Ferrante, RN, OCN®, Shrewsbury, MA
Janice Flynn, RN, DSN, Atlanta, GA
Amy Fregosa, RN, Blue Springs, MO
Leah Garchitorena, RN, Pearland, TX
Barbara Gard, RN, C, OCN®, MSN, CNS, Elkhart, IN
Karen Giammicchio, RN, BSN, Schaumburg, IL
Rebekah Hamilton, PhD, RN, Galena, IL
Sadie Hutson, RN, MSN, CRNP, Rockville, MD
Janet Koegler, RN, Cove, OR
Lauri Linder, RN, MS, APRN, CPON®, Layton, UT
Sheila Lindsay, RN, San Francisco, CA
Susan Lorang, RN, CPAN, Meridian, ID
Katherine Lynch, MS, CGC, Lyndhurst, OH
Janet Magruder, BSN, RN, BC, Asheville, NC
Jacqueline Michels, RN, Cheverly, MD
Theresa Mortensen, RN, FNP-BC, MSN, OCN®, Windsor, CA
Mary Oblock, RN, Santa Clara, CA
Whitney Pritham, RN, NP, Roxbury, MA
Janice Ross, RN, BSN, OCN®, Bloomington, IN
Cindy Solomon, MS, Salt Lake City, UT
Stephanie Steinbart, RN, MPH, Frederick, MD
Teresa Trabert, RN, Aurora, CO
Amy Wing, RN, FNP-C, AOCN®, Loveland, CO
Ingrid Ziebarth, MS, Salt Lake City, UT
 
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Special Interest Group Newsletter  November 2004
 
   

Membership Information


SIG Membership Benefits

  • Network with colleagues in an identified subspecialty area around the country.
  • Contribute articles for your SIG’s newsletter.
  • Participate in discussions with other SIG members.
  • Contribute to the future path of the SIG.
  • Share your expertise.
  • Support and/or mentor a colleague.
  • Receive information about the latest advancements in treatments, clinical trials, etc. Participate in ONS leadership by running for SIG coordinator-elect or join SIG work groups. Acquire information with a click of a mouse: http://sig.ons.wego.net
    • Educational opportunities for your subspecialty
    • Education material on practice
    • Calls to action
    • News impacting or affecting your specific SIG
    • Newsletters
    • Communiqués
    • Meeting minutes
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 "ONS Chapters and Special Interest Groups".
  • Scroll down to "Visit the ONS 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.
  • Once the front page of your SIG's Virtual Community appears on screen, select "New User" from the top left. (This allows you to create log-in credentials.)
  • Type in 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.
Subscribing 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.
To 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.
Signing 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
    • 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."
  • Because you have already joined your SIG’s Virtual Community, you will receive a security prompt with your registered user name already listed. Enter your password at this prompt and click "Finish."
  • 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  November 2004
 
   


Cancer Genetics SIG Officers

Coordinator
Judith (Judie) Kehs Much, CRNP, AOCN®, APRN-BC
Oncology Nurse Practitioner
Integrated Oncology Care
LVH/JDMCC
Cedar Crest & I-78, Suite 408
Allentown, PA 18105
Judith_K.Much@lvh.com

Ex-Officio
Agnes Masny, RN, MPH, MSN, CRNP
Fox Chase Cancer Center
7701 Burholme Avenue
Philadelphia, PA 19111-2412
Business: 215-728-2892
Fax: 215-728-4061
ac_masny@fccc.edu

Coordinator-Elect/Historian
Deborah MacDonald, RN, MS, CS, APNG(c)
City of Hope Comprehensive Cancer Center
1500 Duarte Road
Duarte, CA 91010-3012
Business: 626-256-6882
dmacdonald@coh.org

Newsletter Editor
Marilyn Kile, RN, MSN, APRN, AOCN®
Good Samaritan Health Systems Cancer Center
10 East 31st Street
Kearney, NE 68848-1990
Business: 308-865-7199
Fax: 308-865-2907
marilynkile@catholichealth.net


 

Newsletter Co-Editors
Patricia Kelly, RN, MS, AOCN®
9649 Covemeadow Drive
Dallas, TX 75238-1819
Business: 214-345-8324
Fax: 214-345-6349
PatriciaKelly@TexasHealth.org

Patricia B. Herman, MSN, RN, AOCN®
St. Luke’s Hospital and Health Network
801 Ostrum Street
Bethlehem, PA 18015
Business: 610-954-3579
Fax: 610-954-3583
hermanp@slhn.org

ONS Publishing Division Staff
Amy Nicoletti, BA
Copy Editor
Business: 412-859-6328
anicoletti@ons.org

 

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.

ONS Membership/Leadership Team Contact Information
Angie Stengel, Director of Membership/Leadership
astengel@ons.org
412-859-6244

Carol DeMarco, Membership/Leadership Administrative Assistant
cdemarco@ons.org
412-859-6230

To view past newsletters click here.

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
125 Enterprise Dr.
Pittsburgh, PA 15275-1214
866-257-4ONS
412-859-6100
www.ons.org

 
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