Perception of cure and quality of life in anal cancer survivors

Authors

  • Nina Fanni Department of Surgery, SSORG- Scandinavian Surgical Outcomes Research Group, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Anaesthesiology, Intensive Care Medicine and Pain Medicine, Sahlgrenska University Hospital, Gothenburg, Region Västra Götaland, Sweden https://orcid.org/0009-0009-7800-6465
  • Eva Haglind Department of Surgery, SSORG- Scandinavian Surgical Outcomes Research Group, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Surgery, Sahlgrenska University Hospital, Gothenburg, Region Västra Götaland, Sweden https://orcid.org/0000-0002-1147-5605
  • Sofia Heyman Department of Oncology, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Oncology, Sahlgrenska University Hospital, Gothenburg, Region Västra Götaland, Sweden https://orcid.org/0009-0007-3890-5939
  • Mia Johansson Department of Oncology, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Oncology, Sahlgrenska University Hospital, Gothenburg, Region Västra Götaland, Sweden https://orcid.org/0000-0003-0934-5710
  • Ying Li Department of Surgery, SSORG- Scandinavian Surgical Outcomes Research Group, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; School of Public Health and Community Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden https://orcid.org/0000-0001-7108-6532
  • Anna Perman Department of Surgery, SSORG- Scandinavian Surgical Outcomes Research Group, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Oncology, Sahlgrenska University Hospital, Gothenburg, Region Västra Götaland, Sweden https://orcid.org/0000-0002-6166-4885
  • Eva Angenete Department of Surgery, SSORG- Scandinavian Surgical Outcomes Research Group, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Surgery, Sahlgrenska University Hospital, Gothenburg, Region Västra Götaland, Sweden https://orcid.org/0000-0001-9966-4904

DOI:

https://doi.org/10.2340/1651-226X.2025.44133

Keywords:

Anus Neoplasms, Prognosis, Treatment expectations, Patient reported outcome measures, Fear of Recurrence

Abstract

Background and purpose: Anal cancer is treated with chemoradiotherapy and with salvage surgery in case of local failure. Curation rate depends on tumour stage but is overall high (80–90%).

This study explored anal cancer survivors’ perception of being cured and possible association with Quality of Life (QoL). Secondary aims were to explore fear of recurrence and if perception of cure changed over time or differed depending on tumour stage.

Patients/material and methods: The ANal CAncer study comprises a cohort of patients diagnosed with anal cancer in Sweden between 2011 and 2013 (n = 388). Participants filled out a study-specific questionnaire 3 and/or 6 years after diagnosis (n = 205). In this sub-study, only patients treated with curative intent were included. The association between perception of cure and QoL was analysed using logistic regression. Descriptive analyses were performed regarding secondary aims.

Results: A high proportion (80%) of the patients were either moderately or very sure of cure across all tumour stages, in both early and advanced tumour stages, and with no obvious improvement over time. Despite this 42% experienced fear of recurrence 6 years after diagnosis. A strong perception of cure was correlated with high QoL.

Interpretation: Even though most patients had a perception of being cured, several patients irrespective of tumour stage, felt unsure of cure and feared recurrence years after successful treatment. A strong perception of cure was also shown to be associated with a high QoL. We suggest that improved counselling could enhance the patient’s perception of cure and to possibly improve QoL.

Downloads

Download data is not yet available.

References

Rao S, Guren MG, Khan K, Brown G, Renehan AG, Steigen SE, et al. Anal cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol. 2021;32(9):1087–100.

https://doi.org/10.1016/j.annonc.2021.06.015 DOI: https://doi.org/10.1016/j.annonc.2021.06.015

James RD, Glynne-Jones R, Meadows HM, Cunningham D, Myint AS, Saunders MP, et al. Mitomycin or cisplatin chemoradiation with or without maintenance chemotherapy for treatment of squamous-cell carcinoma of the anus (ACT II): a randomised, phase 3, open-label, 2 × 2 factorial trial. Lancet Oncol. 2013;14(6):516–24.

https://doi.org/10.1016/S1470-2045(13)70086-X DOI: https://doi.org/10.1016/S1470-2045(13)70086-X

Johnsson A, Norman D, Angenete E, Cavalli-Björkman N, Lagerbäck C, Leon O, et al. Anal cancer in Sweden 2015–2019. Implementation of guidelines, structural changes, national registry and early results. Acta Oncol. 2022;61(5):575–82.

https://doi.org/10.1080/0284186X.2022.2048069 DOI: https://doi.org/10.1080/0284186X.2022.2048069

Bentzen AG, Guren MG, Wanderås EH, Frykholm G, Tveit KM, Wilsgaard T, et al. Chemoradiotherapy of anal carcinoma: survival and recurrence in an unselected national cohort. Int J Radiat Oncol Biol Phys. 2012;83(2):e173–80.

https://doi.org/10.1016/j.ijrobp.2011.12.062 DOI: https://doi.org/10.1016/j.ijrobp.2011.12.062

Applebaum AJ, Kolva EA, Kulikowski JR, Jacobs JD, DeRosa A, Lichtenthal WG, et al. Conceptualizing prognostic awareness in advanced cancer: a systematic review. J Health Psychol. 2014;19(9):1103–19.

https://doi.org/10.1177/1359105313484782 DOI: https://doi.org/10.1177/1359105313484782

Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616–25.

https://doi.org/10.1056/NEJMoa1204410 DOI: https://doi.org/10.1056/NEJMoa1204410

El-Jawahri A, Traeger L, Park ER, Greer JA, Pirl WF, Lennes IT, et al. Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer. 2014;120(2):278–85.

https://doi.org/10.1002/cncr.28369 DOI: https://doi.org/10.1002/cncr.28369

Nipp RD, Greer JA, El-Jawahri A, Moran SM, Traeger L, Jacobs JM, et al. Coping and prognostic awareness in patients with advanced cancer. J Clin Oncol. 2017;35(22):2551–7.

https://doi.org/10.1200/JCO.2016.71.3404 DOI: https://doi.org/10.1200/JCO.2016.71.3404

Zijlstra M, van Roij J, Henselmans I, van Laarhoven HWM, Creemers GJ, Vreugdenhil G, et al. Perception of prognosis and health-related quality of life in patients with advanced cancer: results of a multicentre observational study (eQuiPe). Support Care Cancer. 2023;31(3):165.

https://doi.org/10.1007/s00520-023-07631-8 DOI: https://doi.org/10.1007/s00520-023-07631-8

Bergerot CD, Bergerot PG, Philip EJ, Hsu JA, Dizman N, Vaishampayan U, et al. Perception of cure among patients with metastatic genitourinary cancer initiating immunotherapy. J Immunother Cancer. 2019;7(1):71.

https://doi.org/10.1186/s40425-019-0557-5 DOI: https://doi.org/10.1186/s40425-019-0557-5

Soylu C, Babacan T, Sever AR, Altundag K. Patients’ understanding of treatment goals and disease course and their relationship with optimism, hope, and quality of life: a preliminary study among advanced breast cancer outpatients before receiving palliative treatment. Support Care Cancer. 2016;24(8):3481–8.

https://doi.org/10.1007/s00520-016-3182-6 DOI: https://doi.org/10.1007/s00520-016-3182-6

Mackillop WJ, Stewart WE, Ginsburg AD, Stewart SS. Cancer patients’ perceptions of their disease and its treatment. Br J Cancer. 1988;58(3):355–8.

https://doi.org/10.1038/bjc.1988.218 DOI: https://doi.org/10.1038/bjc.1988.218

Kim Y, Winner M, Page A, Tisnado DM, Martinez KA, Buettner S, et al. Patient perceptions regarding the likelihood of cure after surgical resection of lung and colorectal cancer. Cancer. 2015;121(20):3564–73.

https://doi.org/10.1002/cncr.29530 DOI: https://doi.org/10.1002/cncr.29530

Sodergren SC, Vassiliou V, Dennis K, Tomaszewski KA, Gilbert A, Glynne-Jones R, et al. Systematic review of the quality of life issues associated with anal cancer and its treatment with radiochemotherapy. Support Care Cancer. 2015;23(12):3613–23.

https://doi.org/10.1007/s00520-015-2879-2 DOI: https://doi.org/10.1007/s00520-015-2879-2

Sterner A, Derwinger K, Staff C, Nilsson H, Angenete E. Quality of life in patients treated for anal carcinoma – a systematic literature review. Int J Colorectal Dis. 2019;34(9):1517–28.

https://doi.org/10.1007/s00384-019-03342-x DOI: https://doi.org/10.1007/s00384-019-03342-x

Axelsson A, Johansson M, Bock D, Haglind E, de la Croix H, Nilsson PJ, et al. Patient-reported QoL in anal cancer survivors 3 and 6 years after treatment-results from the Swedish national ANCA study. Support Care Cancer. 2022;30(5):4169–78.

https://doi.org/10.1007/s00520-021-06769-7 DOI: https://doi.org/10.1007/s00520-021-06769-7

Simard S, Thewes B, Humphris G, Dixon M, Hayden C, Mireskandari S, et al. Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv. 2013;7(3):300–22.

https://doi.org/10.1007/s11764-013-0272-z DOI: https://doi.org/10.1007/s11764-013-0272-z

Luigjes-Huizer YL, Tauber NM, Humphris G, Kasparian NA, Lam WWT, Lebel S, et al. What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta-analysis. Psychooncology. 2022;31(6):879–92.

https://doi.org/10.1002/pon.5921 DOI: https://doi.org/10.1002/pon.5921

Koch L, Jansen L, Brenner H, Arndt V. Fear of recurrence and disease progression in long-term (≥ 5 years) cancer survivors – a systematic review of quantitative studies. Psychooncology. 2013;22(1):1–11.

https://doi.org/10.1002/pon.3022 DOI: https://doi.org/10.1002/pon.3022

Johansson M, Axelsson A, Haglind E, Bock D, Angenete E. Long-term survival after treatment for primary anal cancer- results from the Swedish national ANCA cohort study. Acta Oncol. 2022;61(4):478–83.

https://doi.org/10.1080/0284186X.2022.2033314 DOI: https://doi.org/10.1080/0284186X.2022.2033314

Steineck G, Helgesen F, Adolfsson J, Dickman PW, Johansson JE, Norlén BJ, et al. Quality of life after radical prostatectomy or watchful waiting. N Engl J Med. 2002;347(11):790–6.

https://doi.org/10.1056/NEJMoa021483 DOI: https://doi.org/10.1056/NEJMoa021483

Asplund D, Heath J, González E, Ekelund J, Rosenberg J, Haglind E, et al. Self-reported quality of life and functional outcome in patients with rectal cancer – QoLiRECT. Dan Med J. 2014;61(5):A4841.

Antonovsky A. The structure and properties of the sense of coherence scale. Soc Sci Med. 1993;36(6):725–33.

https://doi.org/10.1016/0277-9536(93)90033-Z DOI: https://doi.org/10.1016/0277-9536(93)90033-Z

Axelsson A, Johansson M, Haglind E, Li Y, Nilsson PJ, Angenete E. Patient reported long-term side effects from treatment on urinary and sexual function in anal cancer survivors – 3- and 6-year results from the Swedish national ANCA study. Colorectal Dis. 2024;26(7):1359–69.

https://doi.org/10.1111/codi.17040 DOI: https://doi.org/10.1111/codi.17040

Axelsson A, Johansson M, Haglind E, Li Y, Nilsson PJ, Angenete E. Patient reported long-term side effects on bowel function and anal pain in anal cancer survivors – 3- and 6-year results from the Swedish national ANCA study. Colorectal Dis. 2024;26(1):54–62.

https://doi.org/10.1111/codi.16814 DOI: https://doi.org/10.1111/codi.16814

Eriksson M, Lindström B. Antonovsky’s sense of coherence scale and its relation with quality of life: a systematic review. J Epidemiol Community Health. 2007;61(11):938–44.

https://doi.org/10.1136/jech.2006.056028 DOI: https://doi.org/10.1136/jech.2006.056028

Asplund D, Bisgaard T, Bock D, Burcharth J, González E, Haglind E, et al. Pretreatment quality of life in patients with rectal cancer is associated with intrusive thoughts and sense of coherence. Int J Colorectal Dis. 2017;32(11):1639–47.

https://doi.org/10.1007/s00384-017-2900-y DOI: https://doi.org/10.1007/s00384-017-2900-y

Vähäaho N, Hakamies-Blomqvist L, Blomqvist C, Kellokumpu-Lehtinen PL, Huovinen R, Saarto T, et al. Sense of coherence as predictor of quality of life in early breast cancer patients. Anticancer Res. 2021;41(10):5045–52.

https://doi.org/10.21873/anticanres.15319 DOI: https://doi.org/10.21873/anticanres.15319

Skoogh J, Ylitalo N, Larsson Omeróv P, Hauksdóttir A, Nyberg U, Wilderäng U, et al. ‘A no means no’ – measuring depression using a single-item question versus Hospital Anxiety and Depression Scale (HADS-D). Ann Oncol. 2010;21(9):1905–9.

https://doi.org/10.1093/annonc/mdq058 DOI: https://doi.org/10.1093/annonc/mdq058

Ajani JA, Winter KA, Gunderson LL, Pedersen J, Benson AB, 3rd, Thomas CR, Jr., et al. Fluorouracil, mitomycin, and radiotherapy vs fluorouracil, cisplatin, and radiotherapy for carcinoma of the anal canal: a randomized controlled trial. JAMA. 2008;299(16):1914–21.

https://doi.org/10.1001/jama.299.16.1914 DOI: https://doi.org/10.1001/jama.299.16.1914

Northover J, Glynne-Jones R, Sebag-Montefiore D, James R, Meadows H, Wan S, et al. Chemoradiation for the treatment of epidermoid anal cancer: 13-year follow-up of the first randomised UKCCCR Anal Cancer Trial (ACT I). Br J Cancer. 2010;102(7):1123–8.

https://doi.org/10.1038/sj.bjc.6605605 DOI: https://doi.org/10.1038/sj.bjc.6605605

Slørdahl KS, Klotz D, Olsen J, Skovlund E, Undseth C, Abildgaard HL, et al. Treatment outcomes and prognostic factors after chemoradiotherapy for anal cancer. Acta Oncol. 2021;60(7):921–30.

https://doi.org/10.1080/0284186X.2021.1918763 DOI: https://doi.org/10.1080/0284186X.2021.1918763

Leon O, Guren M, Hagberg O, Glimelius B, Dahl O, Havsteen H, et al. Anal carcinoma – survival and recurrence in a large cohort of patients treated according to Nordic guidelines. Radiother Oncol. 2014;113(3):352–8.

https://doi.org/10.1016/j.radonc.2014.10.002 DOI: https://doi.org/10.1016/j.radonc.2014.10.002

Glynne-Jones R, Sebag-Montefiore D, Meadows HM, Cunningham D, Begum R, Adab F, et al. Best time to assess complete clinical response after chemoradiotherapy in squamous cell carcinoma of the anus (ACT II): a post-hoc analysis of randomised controlled phase 3 trial. Lancet Oncol. 2017;18(3):347–56.

https://doi.org/10.1016/S1470-2045(17)30071-2 DOI: https://doi.org/10.1016/S1470-2045(17)30071-2

Winner M, Wilson A, Yahanda A, Kim Y, Pawlik TM. A cross-sectional study of patient and provider perception of ‘cure’ as a goal of cancer surgery. J Surg Oncol. 2016;114(6):677–83.

https://doi.org/10.1002/jso.24401 DOI: https://doi.org/10.1002/jso.24401

Agarwal R, Shin P, Knezevic A, Nelson JE, Romano DR, Bernal C, et al. Accuracy of curability expectations in patients with gastrointestinal cancers. Cancer Med. 2023;12(1):20–9.

https://doi.org/10.1002/cam4.4947 DOI: https://doi.org/10.1002/cam4.4947

Craft PS, Burns CM, Smith WT, Broom DH. Knowledge of treatment intent among patients with advanced cancer: a longitudinal study. Eur J Cancer Care (Engl). 2005;14(5):417–25.

https://doi.org/10.1111/j.1365-2354.2005.00601.x DOI: https://doi.org/10.1111/j.1365-2354.2005.00601.x

Yennurajalingam S, Rodrigues LF, Shamieh O, Tricou C, Filbet M, Naing K, et al. Perception of curability among advanced cancer patients: an international collaborative study. Oncologist. 2018;23(4):501–6.

https://doi.org/10.1634/theoncologist.2017-0264 DOI: https://doi.org/10.1634/theoncologist.2017-0264

Minichsdorfer C, Zeller O, Kirschbaum M, Berghoff AS, Bartsch R. Expectations and perception of cancer treatment goals in previously untreated patients. The EXPECT trial. Support Care Cancer. 2021;29(7):3585–92. DOI: https://doi.org/10.1007/s00520-020-05826-x

https://doi.org/

Luciani F, Veneziani G, Giraldi E, Campedelli V, Galli F, Lai C. To be aware or not to be aware of the prognosis in the terminal stage of cancer? A systematic review of the associations between prognostic awareness with anxiety, depression, and quality of life according to cancer stage. Clin Psychol Rev. 2025;116:102544.

https://doi.org/10.1016/j.cpr.2025.102544 DOI: https://doi.org/10.1016/j.cpr.2025.102544

Additional Files

Published

2025-10-15

How to Cite

Fanni, N., Haglind, E., Heyman, S., Johansson, M., Li, Y., Perman, A., & Angenete, E. (2025). Perception of cure and quality of life in anal cancer survivors. Acta Oncologica, 64, 1404–1411. https://doi.org/10.2340/1651-226X.2025.44133