Skip to main content
SpringerLink
Log in

Concerns and recommendations regarding inherited cancer risk: The perspectives of survivors and female relatives

  • Articles
  • Published:
Journal of Cancer Education Aims and scope Submit manuscript

Abstract

Background. Little research is available comparing differences in cancer risk perceptions between cancer survivors and family members at risk for hereditary breast/ovarian cancer.Methods. Qualitative focus groups with survivor-female relative dyads (N=39) were conducted.Results. Important differences exist between the concerns of survivors and family members relevant to their cancer risk. Survivors focused on their own concerns from a personal perspective, whereas family members focused on the survivors’ health and tended to suppress their own fears of cancer. Specific recommendations for inclusion of family members in cancer risk education are provided.Conclusions. Addressing family member differences is critical to tailor specific risk information inclusive of the entire family.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. McInerney-Leo A, Biesecker BB, Hadley DW, et al. BRCA1/2 testing in hereditary breast and ovarian cancer families II: Impact on relationships. Am J Med Genet A. 2005;133:165–169.

    Google Scholar 

  2. Centers for Disease Control and Prevention, Office of Genomics and Disease Prevention. Genomics and Population Health: United States 2003. Atlanta, GA: Centers for Disease Control and Prevention; 2004.

    Google Scholar 

  3. DeVries H, Mesters I, van de Steeg H, Honing C. The general public’s information needs and perception regarding hereditary cancer: an application of the integrated change model. Pub Educ Couns. 2005;56:154–165.

    Article  Google Scholar 

  4. Bodzin J, Kardia SLR, Goldenberg A, et al. Genomics and public health: development of Web-based training tools for increasing genomic awareness. Prev Chronic Dis [serial online]. April 4, 2005. Available at: http:// www.cdc.gov/pcd/issues/2005/apr/04_0133.htm. Accessed 15 June, 2005.

  5. Miki Y, Swensen J, Shattuck-Eidens, et al. A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science. 1994;266:66–71.

    Article  PubMed  CAS  Google Scholar 

  6. Tavtigian SV, Simnard J, Rommens J, et al. The complete BRCA2 gene and mutations in chromosome 13q-linked kindreds. Nat Genet. 1996;12:333–337.

    Article  PubMed  CAS  Google Scholar 

  7. Wooster R, Bignell G, Lancaster J, et al. Identification of the breast cancer susceptibility gene BRCA2. Nature. 1995;378:789–792.

    Article  PubMed  CAS  Google Scholar 

  8. Ford D, Easton DF, Stratton M, et al. Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The breast cancer linkage consortium. Am J Hum Genet. 1998;62:676–689.

    Article  PubMed  CAS  Google Scholar 

  9. Satagopan JM, Offit K, Foulkes W, et al. The lifetime risk of breast cancer in Ashkenazi Jewish carriers of BRCA1 and BRCA2 mutations. Cancer Epidemiol Biomarkers Prev. 2001;10:467–473.

    PubMed  CAS  Google Scholar 

  10. Struewing JP, Lerman C, Kase RG, et al. The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med. 1997; 336:1401–1408.

    Article  PubMed  CAS  Google Scholar 

  11. Kreuter MW. Dealing with competing and conflicting risks in cancer communication. J Natl Cancer Inst Monogr. 1999;25:27–35.

    PubMed  Google Scholar 

  12. Lanie AD, Jayaratne TE, Sheldon JP, et al. Exploring the public understanding of basic genetic concepts. J Genet Couns. 2004;13:305–320.

    Article  PubMed  Google Scholar 

  13. Croyle RT, Lerman C. Risk communication in genetic testing for cancer susceptibility. J Natl Cancer Inst Monogr. 1999;25:59–66.

    PubMed  Google Scholar 

  14. Lerman C, Croyle RT, Terczak KP, et al. Genetic testing: psychological aspects and implications. J Consult Clin Psychol. 2002;70:784–797.

    Article  PubMed  Google Scholar 

  15. Kenen R, Ardern-Jones A, Eeles R. We are talking, but are they listening? communication patterns in families with a history of breast/ovarian cancer (HBOC) Psychooncology. 2003;13:335–345.

    Google Scholar 

  16. d’Agincourt-Canning L. The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer. J Genet Couns. 2005;2004:55–69.

    Article  Google Scholar 

  17. Lobb EA, Butow P, Barratt A, et al. Differences in individual approaches: communication in the familial breast cancer consultation and the effect on patient outcomes. J Genet Couns. 2005;14:43–53.

    Article  PubMed  Google Scholar 

  18. Wang C, Gonzalez R, Merajver SD. Assessment of genetic testing and related counseling services: current research and future directions. Soc Sci Med. 2004;58:1427–1442.

    Article  PubMed  Google Scholar 

  19. Appleton S, Watson M, Rush R, et al. A randomized controlled trial of a psycho-educational intervention for women at increased risk of breast cancer. Br J Cancer. 2004;90:41–47.

    Article  PubMed  CAS  Google Scholar 

  20. Weinstein ND. Why it won’t happen to me: perceptions of risk factors susceptibility. Health Psychol. 1984;3:431–457.

    Article  PubMed  CAS  Google Scholar 

  21. Weinstein ND. Unrealistic optimism about susceptibility to health problems: conclusions from a community-wide sample. J Behav Med. 1987;10:481–500.

    Article  PubMed  CAS  Google Scholar 

  22. Biesecker BB, Ishibe N, Hadley DW. Psychosocial factors predicting BRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families. Am J Med Genet. 2000;93:257–263.

    Article  PubMed  CAS  Google Scholar 

  23. Green J, Richards M, Murton F, et al. Family communication and genetic counseling: the case of hereditary breast and ovarian cancer. J Genet Couns. 1997;6:45–60.

    Article  Google Scholar 

  24. Forrest K, Simpson SA, Wilson BJ, et al. To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet. 2003;64:317–326.

    Article  PubMed  CAS  Google Scholar 

  25. Coyne JC, Anderson KK. Marital status, marital satisfaction, and support processes among women at high risk for breast cancer. J Fam Psychol. 1999;13:629–641.

    Article  Google Scholar 

  26. Hughes C, Lerman C, Schwartz M, et al. All in the family: evaluation of the process and consent of sisters’ communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet. 2002;107:143–150.

    Article  PubMed  Google Scholar 

  27. Manne S, Markowitz A, Winawer S, et al. Correlates of colorectal cancer screening compliance and stage of adoption among siblings of individuals with early onset colorectal cancer. Health Psychol. 2002;21:3–15.

    Article  PubMed  Google Scholar 

  28. Claes E, Evers-Kiebooms G, Boogaerts A, et al. Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet A. 2003;116:11–19.

    Article  Google Scholar 

  29. Koehly SM, Peterson SK, Watts BG, et al. A social network analysis of communication about hereditary colorectal cancer genetic testing and family functioning. Cancer Epidemiol Biomarkers Prev. 2003; 12:304–313.

    PubMed  Google Scholar 

  30. Hamilton RJ, Bowers BJ, Williams JK. Disclosing genetic test results to family members. Image J Nurs Scholarsh. 2005;37:18–24.

    Article  Google Scholar 

  31. Jacobsen PB, Valdimarsdottier HB, Brown KL, et al. Decision-making about genetic testing among women at familial risk for breast cancer. Psychosom Med. 1997;59:459–466.

    PubMed  CAS  Google Scholar 

  32. Lerman C, Seay J, Balshem A, et al. Interest in genetic testing among first-degree relatives of breast cancer patients. Am J Med Genet. 1995;57:385–392.

    Article  PubMed  CAS  Google Scholar 

  33. Mellon S, Berry-Bobovski L, Gold R, et al. Communication and decision-making about seeking inherited cancer risk information: findings from female survivor-relative focus groups. Psychooncology. 2006;15:193–208.

    Article  PubMed  Google Scholar 

  34. QSR International Pty Ltd. QSR NVivo: New Generation Software for Qualitative Analysis [computer program] Version. Doncaster, Victoria, Australia: QSR International Pty Ltd; 2002.

    Google Scholar 

  35. Mellon S. Comparisons between cancer survivors and family members on meaning of the illness and family quality of life. Oncol Nurs Forum. 2002;29:1–9.

    Article  Google Scholar 

  36. Taylor EJ. Transformation of tragedy among women surviving breast cancer. Oncol Nurs Forum. 2000;27:781–788.

    PubMed  CAS  Google Scholar 

  37. Hilton BA, Crawford JA, Tarko MA. Men’s perspectives on individual and family coping with their wives’ breast cancer and chemotherapy. West J Nurs Res. 2000;22:438–459.

    PubMed  CAS  Google Scholar 

  38. Zahlis EH, Shands ME. Breast cancer: demands of the illness on the patient’s partner. J Psychosoc Oncol. 1991;9:75–93.

    Article  Google Scholar 

  39. Rimer BK, Schildkraut JM, Lerman C, et al. Participation in a women’s breast cancer risk counseling trial: who participates? Who declines? Cancer. 1996;77:2348–2355.

    Article  PubMed  CAS  Google Scholar 

Download references

Author information

Author notes

  1. Suzanne Mellon PHD, RN

    Present address: University of Detroit Mercy, 4001 W. McNichols Road, 48219-0900, Detroit, MI

Authors and Affiliations

  1. Karmanos Cancer Institute, Detroit, MI

    Lisa Berry-Bobovski BA, Nancy Levin BS & Michael A. Tainsky PHD

  2. Wayne State University, Detroit, MI

    Michael A. Tainsky PHD

  3. Oakwood Health System, nOakwood

    Robin Gold MS, CGC

Authors
  1. Suzanne Mellon PHD, RN
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Lisa Berry-Bobovski BA
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Robin Gold MS, CGC
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Nancy Levin BS
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Michael A. Tainsky PHD
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Suzanne Mellon PHD, RN.

Additional information

Supported by The Barbara and Fred Erb Endowed Chair in Cancer Genetics to M.A. Tainsky and research funds from the Karmanos Cancer Institute. The findings from this research resulted in an award from the National Institute of Nursing Research, National Institutes of Health, R21 NR008584-01.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Mellon, S., Berry-Bobovski, L., Gold, R. et al. Concerns and recommendations regarding inherited cancer risk: The perspectives of survivors and female relatives. J Canc Educ 22, 168–173 (2007). https://doi.org/10.1007/BF03174331

Download citation

  • Issue Date:

  • DOI: https://doi.org/10.1007/BF03174331

Keywords

Search

Navigation