Familial Cancer

, Volume 14, Issue 1, pp 51–60 | Cite as

The impact of risk-reducing gynaecological surgery in premenopausal women at high risk of endometrial and ovarian cancer due to Lynch syndrome

  • Ramona Moldovan
  • Sianan Keating
  • Tara Clancy
Original Article


Women with Lynch syndrome (LS) have a significantly increased lifetime risk of endometrial cancer (40–60 %) and ovarian cancer (7–12 %). Currently there is little evidence to support the efficacy of screening for the early detection of these cancers. Another option is risk-reducing hysterectomy and/or bilateral salpingo-oophorectomy (BSO). Research on the impact of BSO in premenopausal women with a non-LS associated family history cancer has generally shown that women have a high level of satisfaction about their decision to undergo surgery. However, debilitating menopausal symptoms and sexual dysfunction are common post-surgical problems. We used a mixed methods study to explore the impact of risk-reducing gynaecological surgery in women with LS: 24 women were invited to take part; 15 (62.5 %) completed validated questionnaires and 12 (50 %) participated in semi-structured interviews. Our results suggest that risk reducing surgery does not lead to significant psychological distress and the women tend not to think or worry much about developing cancer. However, they tend to be distressed about the physical and somatic symptoms associated with menopause; their social well-being is somewhat affected, but sexual difficulties are minimal. The women reported being overwhelmingly satisfied with their decision to have surgery and with the quality of information they received prior to the operation. However, they felt underprepared for menopausal symptoms and received conflicting advice about whether or not to use HRT. Recommendations from the study include that professionals discuss the menopause, its side effects and HRT in detail prior to surgery.


Lynch syndrome Psychosocial impact Risk reducing surgery Endometrial cancer Ovarian cancer 



The authors would like to thank the women who agreed to participate in this study for all their time and effort.

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical standards

The study has been approved by Northwest 6 Research Ethics Committee, Greater Manchester and has therefore been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. All participants gave their informed consent prior to their inclusion in the study. All details that might disclose the identity of the participants have been omitted.


  1. 1.
    Silva FC, Valentin MD, Ferreira FdeO, Carraro DM, Rossi BM (2009) Mismatch repair genes in Lynch syndrome: a review. Sao Paulo Med J 127:46–51. doi: 10.1590/S1516-31802009000100010 CrossRefPubMedGoogle Scholar
  2. 2.
    Aarnio M, Sankila R, Pukkala E, Salovaara R, Aaltonen LA, de la Chapelle A et al (1999) Cancer risk in mutation carriers of DNA-mismatch-repair genes. Int J Cancer 8:214–218. doi: 10.1002/(SICI)1097-0215(19990412)81:2<214:AID-IJC8>3.0.CO;2-L CrossRefGoogle Scholar
  3. 3.
    Lynch HT, Casey MJ, Snyder CL, Bewtra C, Lynch JF, Butts M, Godwin A (2009) Hereditary ovarian cancer: molecular genetics, pathology, management, and heterogeneity. Mol Oncol 3(2):97–147. doi: 10.1016/j.molonc.2009.02.004 CrossRefPubMedCentralPubMedGoogle Scholar
  4. 4.
    Schmeler KM, Daniels MS, Soliman PT, Broaddus RR, Deavers MT, Vu TM, Chang GJ, Lu KH (2010) Primary peritoneal cancer after bilateral salpingo-oophorectomy in two patients with Lynch syndrome. Obstet Gynecol 115(2):432–434. doi: 10.1097/AOG.0b013e3181b6f4f9 CrossRefPubMedCentralPubMedGoogle Scholar
  5. 5.
    Auranen A, Joutsiniemi T (2011) A systematic review of gynecological cancer surveillance in women belonging to hereditary nonpolyposis colorectal cancer (Lynch syndrome) families. Acta Obstet Gynecol Scand 90:437–444. doi: 10.1111/j.1600-0412.2011.01091.x CrossRefPubMedGoogle Scholar
  6. 6.
    Renkonen-Sinisalo L, Butzow R, Leminen A, Lehtovirta P, Mecklin JP, Jarvinen HJ (2007) Surveillance for endometrial cancer in hereditary nonpolyposis colorectal cancer syndrome. Int J Cancer 120:821–824. doi: 10.1002/ijc.22446 CrossRefPubMedGoogle Scholar
  7. 7.
    Schmeler KM, Lynch HT, Chen LM, Munsell MF, Soliman PT, Clark MB, Daniels MS, White KG, Boyd-Rogers SG, Conrad PG et al (2006) Prophylactic surgery to reduce the risk of gynecologic cancers in the Lynch syndrome. N Engl J Med 354:261–269. doi: 10.1056/NEJMoa052627 CrossRefPubMedGoogle Scholar
  8. 8.
    Domchek SM, Rebbeck TR (2007) Prophylactic oophorectomy in women at increased cancer risk. Curr Opin Obstet Gynecol 19:27–30CrossRefPubMedGoogle Scholar
  9. 9.
    Benshushan A, Rojansky N, Chaviv M et al (2009) Climacteric symptoms in women undergoing risk-reducing bilateral salpingo-oophorectomy. Climacteric 12:404–409. doi: 10.1080/13697130902780846 CrossRefPubMedGoogle Scholar
  10. 10.
    Elit L, Esplen MJ, Butler K, Narod S (2001) Quality of life and psychosexual adjustment after prophylactic oophorectomy for a family history of ovarian cancer. Fam Cancer 1:149–156. doi: 10.1023/A:1021119405814 CrossRefPubMedGoogle Scholar
  11. 11.
    Ray JA, Loescher LJ, Brewer M (2005) Risk-reduction surgery decisions in high-risk women seen for genetic counseling. J Genet Couns 14(6):473–484CrossRefPubMedGoogle Scholar
  12. 12.
    Miller SM, Roussi P, Daly MB, Scarpato J (2010) New strategies in ovarian cancer: uptake and experience of women at high risk of ovarian cancer who are considering risk-reducing salpingo-oophorectomy. Clin Cancer Res 16(21):5094–5106. doi: 10.1158/1078-0432.CCR-09-2953 CrossRefPubMedCentralPubMedGoogle Scholar
  13. 13.
    National Institute for Health and Care Excellence (2013) Familial breast cancer: classification and care of people at risk of familial breast cancer and management of breast cancer and related risks in people with a family history of breast cancer NICE clinical guideline 164Google Scholar
  14. 14.
    Finch A, Metcalfe K, Lui J et al (2009) Breast and ovarian cancer risk perception after prophylactic salpingo-oophorectomy due to an inherited mutation in the BRCA1 or BRCA2 gene. Clin Genet 75(3):220–224CrossRefPubMedGoogle Scholar
  15. 15.
    Bresser PJ, Seynaeve C, Van Gool AR et al (2007) The course of distress in women at increased risk of breast and ovarian cancer due to an (identified) genetic susceptibility who opt for prophylactic mastectomy and/or salpingo-oophorectomy. Eur J Cancer 43(1):95–103. doi: 10.1016/j.ejca.2006.09.009 CrossRefPubMedGoogle Scholar
  16. 16.
    Lodder LN, Frets PG, Trijsburg RW et al (2002) One year follow-up of women opting for presymptomatic testing for BRCA1 and BRCA2: emotional impact of the test outcome and decisions on risk management (surveillance or prophylactic surgery). Breast Cancer Res Treat 73(2):97–112CrossRefPubMedGoogle Scholar
  17. 17.
    Tiller K, Meiser B, Butow P, Clifton M, Thewes B, Friedlander M, Tucker K (2002) Psychological impact of prophylactic oophorectomy in women at increased risk of developing ovarian cancer: a prospective study. Gynecol Oncol 86:212–219. doi: 10.1006/gyno.2002.6737 CrossRefPubMedGoogle Scholar
  18. 18.
    Hurley KE, Miller SM, Costalas JW, Gillespie D, Daly MB (2001) Anxiety/uncertainty reduction as a motivation for interest in prophylactic oophorectomy in women with a family history of ovarian cancer. J Women Health Gend Based Med 10:189–199. doi: 10.1089/152460901300039566 CrossRefGoogle Scholar
  19. 19.
    Fry A, Rush R, Busby-Earle C, Cull A (2001) Deciding about prophylactic oophorectomy: what is important to women at increased risk of ovarian cancer? Prev Med 33:578–585. doi: 10.1006/pmed.2001.0924 CrossRefPubMedGoogle Scholar
  20. 20.
    Hallowell N, Mackay J, Richards M, Gore M, Jacobs I (2004) High-risk premenopausal women’s experiences of undergoing prophylactic oophorectomy: a descriptive study. Genet test 8:148–156. doi: 10.1089/gte.2004.8.148 CrossRefPubMedGoogle Scholar
  21. 21.
    Hilditch JR, Lewis J, Peter A, van Maris B, Ross A, Franssen E, Guatt GH, Norton PG, Dunn E (2008) A menopause-specific quality of life questionnaire: development and psychometric properties. J Climateric Postmenopause 61:107–121. doi: 10.1016/S0378-5122(96)82006-8 Google Scholar
  22. 22.
    Lerman C, Trock B, Rimer BK, Jepson C, Brody D, Boyce A (1991) Psychological side-effects f breast-cancer screening. Health Psychol 10:259–267. doi: 10.1037/0278-6133.10.4.259 CrossRefPubMedGoogle Scholar
  23. 23.
    Horowitz M, Wilner N, Alvarez W (1979) Impact of event scale: a measure of subjective stress. Psychosom Med 41:209–218, PMID:472086Google Scholar
  24. 24.
    Goldberg DP, Hillier VF (1979) A scaled version of the general health questionnaire. Psychol Med 9:139–145. doi: 10.1017/S0033291700021644 CrossRefPubMedGoogle Scholar
  25. 25.
    Smith JA (1996) Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychol Health 11:261–271. doi: 10.1080/08870449608400256 CrossRefGoogle Scholar
  26. 26.
    Chapman E, Smith JA (2002) Interpretative phenomenological analysis and the new genetics. J Health Psychol 7:125–130. doi: 10.1177/1359105302007002397 CrossRefPubMedGoogle Scholar
  27. 27.
    Smith JA, Osborn M (2003) Interpretative phenomenological analysis. In: Smith JA (ed) Qualitative Psychology. Sage, LondonGoogle Scholar
  28. 28.
    Kornblith AB (1998) Psychosocial adaptation of cancer survivors. In: Holland J (ed) Psycho-oncology. Oxford University Press, New York, p 1998Google Scholar
  29. 29.
    Zabora J, Brintzenhofeszoc K, Curbow B, Hooker C, Piantadosi S (2001) The prevalence of psychological distress by cancer site. Psycho-Oncol 10:19–28. doi: 10.1002/1099-1611(200101/02)10:1<19:AID-PON501>3.0.CO;2-6 CrossRefGoogle Scholar
  30. 30.
    Kangas M, Henry J, Bryant R (2002) Posttraumatic stress disorder following cancer: a conceptual and empirical review. Clin Psychol Rev 22:499–524. doi: 10.1016/S0272-7358(01)00118-0 CrossRefPubMedGoogle Scholar
  31. 31.
    Hodges LJ, Humphris GM, Macfarlane G (2005) A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med 60:1–12. doi: 10.1016/j.socscimed.2004.04.018 CrossRefPubMedGoogle Scholar
  32. 32.
    Bruce MA (2006) Systematic and conceptual review of posttraumatic stress in childhood cancer survivors and their parents. Clin Psycho Rev 26:233–256. doi: 10.1016/j.cpr.2005.10.002 CrossRefGoogle Scholar
  33. 33.
    Schlich-Bakker KJ, Warlam-Rodenhuis CC, van Echtelt J, van den Bout J, Ausems MG, Kroode HF (2006) Short term psychological distress in patients actively approached for genetic counselling after diagnosis of breast cancer. Eur J Cancer 42:2722–2728. doi: 10.1016/j.ejca.2006.05.032 CrossRefPubMedGoogle Scholar
  34. 34.
    Geirdal AO, Reichelt JG, Dahl AA, Heimdal K, Maehle L, Stormorken A, Moller P (2005) Psychological distress in women at risk of hereditary breast/ovarian or HNPCC cancers in the absence of demonstrated mutations. Fam Cancer 4:121–126. doi: 10.1007/s10689-004-7995-y CrossRefPubMedGoogle Scholar
  35. 35.
    Bjorvatn C, Eide GE, Hanestad BR, Havik OE (2008) Anxiety and depression among subjects attending genetic counseling for hereditary cancer. Patient Educ Couns 71:234–243. doi: 10.1016/j.pec.2008.01.008 CrossRefPubMedGoogle Scholar
  36. 36.
    Cohen J (1977) Statistical power analysis for the behavioral sciences, 1st edn. Lawrence Erlbaum Associates, HillsdaleGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2014

Authors and Affiliations

  • Ramona Moldovan
    • 1
    • 2
  • Sianan Keating
    • 2
    • 3
  • Tara Clancy
    • 2
    • 4
  1. 1.Department of PsychologyBabes-Bolyai UniversityCluj-NapocaRomania
  2. 2.University of ManchesterManchesterUK
  3. 3.Department of Clinical GeneticsUniversity Hospital Bristol, Trust HeadquartersBristolUK
  4. 4.Manchester Centre for Genomic Medicine, Saint Mary’s HospitalCentral Manchester University Hospitals NHS Foundation TrustManchesterUK

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