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01-01-2015 | Ophthalmologic cancers | Article

11. Long-Term Follow-Up of Retinoblastoma Survivors

Author: Danielle Novetsky Friedman, M.D.

Publisher: Springer International Publishing

Abstract

Over the past century, advances in the treatment of retinoblastoma have resulted in dramatically improved survival rates. As a result, increased attention has been given to the delineation, early identification, and treatment of survivors’ potential late effects of therapy, which may develop many years after initial treatment. While adverse oculo-visual outcomes and an increased risk of subsequent primary malignancies (in those with the genetic form of the disease) are well-documented, little is known about retinoblastoma survivors’ long-term general health and health status. The current chapter seeks to summarize the published data on retinoblastoma-specific late effects and highlight areas of inquiry which warrant further investigation. We begin by providing background on general childhood cancer survivorship and then survey the published literature on retinoblastoma-specific late medical outcomes, health-related quality of life, and cognitive outcomes. We also include data on extra-ocular retinoblastoma survivors’ late effect profiles as well as recent published data on the utility of whole body MRI screening in those with the genetic form of the disease. We conclude with clinical recommendations for the long-term care of retinoblastoma survivors.

Abramson DH, Frank CM. Second nonocular tumors in survivors of bilateral retinoblastoma: a possible age effect on radiation-related risk. Ophthalmology. 1998;105(4):573–9. Discussion 579–580.CrossRefPubMed

Abramson DH, Melson MR, Dunkel IJ, Frank CM. Third (fourth and fifth) nonocular tumors in survivors of retinoblastoma. Ophthalmology. 2001;108(10):1868–76.CrossRefPubMed

Abramson DH, Melson MR, Servodidio C. Visual fields in retinoblastoma survivors. Arch Ophthalmol. 2004;122(9):1324–30.CrossRefPubMed

COG. Children’s Oncology Group long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers, version 4.0. 2014. Accessed 2 Oct 2014.

DeSantis CE, Lin CC, Mariotto AB, Siegel RL, Stein KD, Kramer JL, Alteri R, Robbins AS, Jemal A. Cancer treatment and survivorship statistics, 2014. CA Cancer J Clin. 2014;64(4):252–71.CrossRefPubMed

Desjardins L, Chefchaouni MC, Lumbroso L, Levy C, Asselain B, Bours D, Vedrenne J, Zucker JM, Doz F. Functional results after treatment of retinoblastoma. J AAPOS. 2002;6(2):108–11.CrossRefPubMed

Diller L, Chow EJ, Gurney JG, Hudson MM, Kadin-Lottick NS, Kawashima TI, Leisenring WM, Meacham LR, Mertens AC, Mulrooney DA, Oeffinger KC, Packer RJ, Robison LL, Sklar CA. Chronic disease in the Childhood Cancer Survivor Study cohort: a review of published findings. J Clin Oncol. 2009;27(14):2339–55.CrossRefPubMedCentralPubMed

Ek U, Seregard S, Jacobson L, Oskar K, Af Trampe E, Kock E. A prospective study of children treated for retinoblastoma: cognitive and visual outcomes in relation to treatment. Acta Ophthalmol Scand. 2002;80(3):294–9.CrossRefPubMed

Eldridge R, O’Meara K, Kitchin D. Superior intelligence in sighted retinoblastoma patients and their families. J Med Genet. 1972;9(3):331–5.CrossRefPubMedCentralPubMed

Eng C, Li FP, Abramson DH, Ellsworth RM, Wong FL, Goldman MB, Seddon J, Tarbell N, Boice Jr JD. Mortality from second tumors among long-term survivors of retinoblastoma. J Natl Cancer Inst. 1993;85(14):1121–8.CrossRefPubMed

Francis JH, Kleinerman RA, Seddon JM, Abramson DH. Increased risk of secondary uterine leiomyosarcoma in hereditary retinoblastoma. Gynecol Oncol. 2012;124(2):254–9.CrossRefPubMedCentralPubMed

Friedman DN, Sklar CA, Oeffinger KC, Kernan NA, Khakoo Y, Marr BP, Wolden SL, Abramson DH, Dunkel IJ. Long-term medical outcomes in survivors of extra-ocular retinoblastoma: the Memorial Sloan-Kettering Cancer Center (MSKCC) experience. Pediatr Blood Cancer. 2013;60(4):694–9.CrossRefPubMed

Friedman DN, Lis E, Sklar CA, Oeffinger KC, Reppucci M, Fleischut MH, Francis JH, Marr B, Abramson DH, Dunkel IJ. Whole-body magnetic resonance imaging (WB-MRI) as surveillance for subsequent malignancies in survivors of hereditary retinoblastoma: A pilot study. Pediatr Blood Cancer. 2014;61(8):1440–4.CrossRefPubMedCentralPubMed

Geenen MM, Cardous-Ubbink MC, Kremer LC, van den Bos C, van der Pal HJ, Heinen RC, Jaspers MW, Koning CC, Oldenburger F, Langeveld NE, Hart AA, Bakker PJ, Caron HN, van Leeuwen FE. Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA. 2007;297(24):2705–15.CrossRefPubMed

Hudson MM, Mulrooney DA, Bowers DC, Sklar CA, Green DM, Donaldson SS, Oeffinger KC, Neglia JP, Meadows AT, Robison LL. High-risk populations identified in Childhood Cancer Survivor Study investigations: implications for risk-based surveillance. J Clin Oncol. 2009;27(14):2405–14.CrossRefPubMedCentralPubMed

Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, Green DM, Armstrong GT, Nottage KA, Jones KE, Sklar CA, Srivastava DK, Robison LL. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA. 2013;309(22):2371–81.CrossRefPubMedCentralPubMed

Institute NC. Common terminology criteria for adverse events, version 4.03. 2010. http://evs.nci.nih.gov/ftp1/CTCAE/CTCAE_4.03_2010-06-14_QuickReference_8.5x11.pdf. Accessed 10 Oct 2014.

Kaste SC, Chen G, Fontanesi J, Crom DB, Pratt CB. Orbital development in long-term survivors of retinoblastoma. J Clin Oncol. 1997;15(3):1183–9.PubMed

Kleinerman RA, Tucker MA, Tarone RE, Abramson DH, Seddon JM, Stovall M, Li FP, Fraumeni Jr JF. Risk of new cancers after radiotherapy in long-term survivors of retinoblastoma: an extended follow-up. J Clin Oncol. 2005;23(10):2272–9.CrossRefPubMed

Kleinerman RA, Tucker MA, Abramson DH, Seddon JM, Tarone RE, Fraumeni Jr JF. Risk of soft tissue sarcomas by individual subtype in survivors of hereditary retinoblastoma. J Natl Cancer Inst. 2007;99(1):24–31.CrossRefPubMed

Kleinerman RA, Schonfeld SJ, Tucker MA. Sarcomas in hereditary retinoblastoma. Clin Sarcoma Res. 2012a;2(1):15.CrossRefPubMedCentralPubMed

Kleinerman RA, Yu CL, Little MP, Li Y, Abramson D, Seddon J, Tucker MA. Variation of second cancer risk by family history of retinoblastoma among long-term survivors. J Clin Oncol. 2012b;30(9):950–7.CrossRefPubMedCentralPubMed

MacCarthy A, Bayne AM, Draper GJ, Eatock EM, Kroll ME, Stiller CA, Vincent TJ, Hawkins MM, Jenkinson HC, Kingston JE, Neale R, Murphy MF. Non-ocular tumours following retinoblastoma in Great Britain 1951 to 2004. Br J Ophthalmol. 2009;93(9):1159–62.CrossRefPubMed

MacCarthy A, Bayne AM, Brownbill PA, Bunch KJ, Diggens NL, Draper GJ, Hawkins MM, Jenkinson HC, Kingston JE, Stiller CA, Vincent TJ, Murphy MF. Second and subsequent tumours among 1927 retinoblastoma patients diagnosed in Britain 1951-2004. Br J Cancer. 2013;108(12):2455–63.CrossRefPubMedCentralPubMed

Mangione CM, Lee PP, Gutierrez PR, Spritzer K, Berry S, Hays RD. Development of the 25-item National Eye Institute Visual Function Questionnaire. Arch Ophthalmol. 2001;119(7):1050–8.CrossRefPubMed

Marees T, Moll AC, Imhof SM, de Boer MR, Ringens PJ, van Leeuwen FE. Risk of second malignancies in survivors of retinoblastoma: more than 40 years of follow-up. J Natl Cancer Inst. 2008;100(24):1771–9.CrossRefPubMed

Mertens AC, Liu Q, Neglia JP, Wasilewski K, Leisenring W, Armstrong GT, Robison LL, Yasui Y. Cause-specific late mortality among 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. J Natl Cancer Inst. 2008;100(19):1368–79.CrossRefPubMedCentralPubMed

Moll AC, Imhof SM, Bouter LM, Tan KE. Second primary tumors in patients with retinoblastoma. A review of the literature. Ophthalmic Genet. 1997;18(1):27–34.CrossRefPubMed

Moll AC, Imhof SM, Schouten-Van Meeteren AY, Kuik DJ, Hofman P, Boers M. Second primary tumors in hereditary retinoblastoma: a register-based study, 1945-1997: is there an age effect on radiation-related risk? Ophthalmology. 2001;108(6):1109–14.CrossRefPubMed

Nahum MP, Gdal-On M, Kuten A, Herzl G, Horovitz Y, Weyl Ben Arush M. Long-term follow-up of children with retinoblastoma. Pediatr Hematol Oncol. 2001;18(3):173–9.CrossRefPubMed

Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W, Robison LL. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82.CrossRefPubMed

Peylan-Ramu N, Bin-Nun A, Skleir-Levy M, Bibas A, Koplewitz B, Anteby I, Pe’er J. Orbital growth retardation in retinoblastoma survivors: work in progress. Med Pediatr Oncol. 2001;37(5):465–70.CrossRefPubMed

Robison LL, Mertens AC, Boice JD, Breslow NE, Donaldson SS, Green DM, Li FP, Meadows AT, Mulvihill JJ, Neglia JP, Nesbit ME, Packer RJ, Potter JD, Sklar CA, Smith MA, Stovall M, Strong LC, Yasui Y, Zeltzer LK. Study design and cohort characteristics of the Childhood Cancer Survivor Study: a multi-institutional collaborative project. Med Pediatr Oncol. 2002;38(4):229–39.CrossRefPubMed

Rodjan F, Graaf P, Brisse HJ, Verbeke JI, Sanchez E, Galluzzi P, Goricke S, Maeder P, Aerts I, Dendale R, Desjardins L, de Franscesco S, Bornfeld N, Sauerwein W, Popovic MB, Knol DL, Moll AC, Castelijns JA. Second cranio-facial malignancies in hereditary retinoblastoma survivors previously treated with radiation therapy: clinic and radiologic characteristics and survival outcomes. Eur J Cancer. 2013;49(8):1939–47.CrossRefPubMed

Rueegg CS, Gianinazzi ME, Rischewski J, Beck Popovic M, von der Weid NX, Michel G, Kuehni CE. Health-related quality of life in survivors of childhood cancer: the role of chronic health problems. J Cancer Surviv. 2013;7(4):511–22.CrossRefPubMed

van Dijk J, Huisman J, Moll AC, Schouten-van Meeteren AY, Bezemer PD, Ringens PJ, Cohen-Kettenis PT, Imhof SM. Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands. Health Qual Life Outcomes. 2007a;5:65.CrossRefPubMedCentralPubMed

van Dijk J, Imhof SM, Moll AC, Ringens PJ, Cohen-Kettenis PT, Rijmen F, Huisman J. Quality of life of adult retinoblastoma survivors in the Netherlands. Health Qual Life Outcomes. 2007b;5:30.CrossRefPubMedCentralPubMed

van Dijk J, Oostrom KJ, Imhof SM, Moll AC, Schouten-van Meeteren AY, Bezemer PD, Huisman J. Behavioural functioning of retinoblastoma survivors. Psychooncology. 2009;18(1):87–95.CrossRefPubMed

van Dijk J, Oostrom KJ, Huisman J, Moll AC, Cohen-Kettenis PT, Ringens PJ, Imhof SM. Restrictions in daily life after retinoblastoma from the perspective of the survivors. Pediatr Blood Cancer. 2010;54(1):110–5.CrossRefPubMed

Weintraub N, Rot I, Shoshani N, Pe’er J, Weintraub M. Participation in daily activities and quality of life in survivors of retinoblastoma. Pediatr Blood Cancer. 2011;56(4):590–4.CrossRefPubMed

Willard VW, Qaddoumi I, Chen S, Zhang H, Brennan R, Rodriguez-Galindo C, Wilson MW, Phipps S. Developmental and adaptive functioning in children with retinoblastoma: a longitudinal investigation. J Clin Oncol. 2014;32(25):2788–93.CrossRefPubMed

Wong FL, Boice Jr JD, Abramson DH, Tarone RE, Kleinerman RA, Stovall M, Goldman MB, Seddon JM, Tarbell N, Fraumeni Jr JF, Li FP. Cancer incidence after retinoblastoma. Radiation dose and sarcoma risk. JAMA. 1997;278(15):1262–7.CrossRefPubMed

Wong JR, Morton LM, Tucker MA, Abramson DH, Seddon JM, Sampson JN, Kleinerman RA. Risk of subsequent malignant neoplasms in long-term hereditary retinoblastoma survivors after chemotherapy and radiotherapy. J Clin Oncol. 2014;32(29):3284–90.CrossRefPubMedCentralPubMed

Medicine Matters Oncology

Abstract