“There is a life before and after cancer”
Experiences of resuming life and unmet care needs in stage I and II melanoma survivors
N. C.W. Kamminga (Erasmus MC)
J. E.C. Kievits (Erasmus MC, Albert Schweitzer Hospital, Dordrecht)
M. Wakkee (Erasmus MC)
S.G.W.van Loon (Erasmus MC)
M.C.W. Joosen (Tilburg University)
D. Verver (Franciscus Gasthuis)
K. Munte (Maasstad Hospital)
P. W.P. Plaisier (Albert Schweitzer Hospital, Dordrecht)
J.A.C. Rietjens (Erasmus MC, TU Delft - DesIgning Value in Ecosystems)
T. E.C. Nijsten (Erasmus MC)
M. Lugtenberg (Tilburg University, Erasmus MC)
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Abstract
Although the largest increase in melanoma incidence is observed for localised melanoma, little research has been done on its impact. Despite favourable prognoses and relatively short treatment trajectories, diagnosis and treatment may significantly impact life post-treatment. Therefore, the aim of this study was to gain an in-depth understanding of stage I and II melanoma survivors’ experiences resuming life after treatment and their associated survivorship care (SSC) needs. A qualitative focus group study was conducted with 18 stage I or II melanoma survivors, divided over three focus groups with 6 survivors each. Transcripts were analysed through thorough thematic content analysis, using multiple phases of coding. In resuming life, survivors experienced profound initial impacts of disease and treatment, fed by a perceived lack of knowledge and underestimation of melanoma. They faced unexpected physical and emotional effects post-surgery, experiencing mixed feelings from relief to fear and uncertainty. Survivors felt misunderstood, had to adjust their lives, and managed personal and external expectations while experiencing a positive shift in life perspective, leading to a notable difference in life before and after cancer. In terms of SSC needs, survivors stressed the need for tailored information, accessible resources, patient-centered follow-up, and supportive care addressing the total impact of disease and treatment. These findings highlight the importance of improving melanoma awareness and providing holistic SSC not only to advanced, but also to localised melanoma survivors. A tailored survivorship care plan could facilitate access to information and supportive care, helping patients resume their lives.
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