The road less travelled: Australian women's experiences with vulval cancer

Abstract

Despite advances in surgical treatments and the availability of more conservative treatment options, women treated for vulval cancer still experience significant complications such as urinary incontinence, lymphoedema, pruritus, sexual and intimacy issues. These issues can profoundly impact a woman's quality of life. The subjective experience of women diagnosed and treated for vulval cancer in the literature is limited, possibly due to its comparable rarity to other gynaecological and female cancers and because it was traditionally seen mainly in the elderly female population. Nonetheless, younger women are also being diagnosed with vulval cancer. This paper reports the findings from a qualitative study about twelve women's experiences with vulval cancer from diagnosis, through treatment and recovery. Women's feelings of isolation, their unmet information and support needs, physical concerns arising from vulval cancer, particularly after surgery, and the consequences for their body image and intimate relationships with partners, were highlighted within the data. The central findings from this study emphasise the need for further research to develop appropriate interventions for women with vulval cancer. It also highlights opportunities to improve clinical practice into the supportive care of women with this isolating disease.

‘Feeling someone is there for you’ – experiences of women with vulvar neoplasia with care delivered by an Advanced Practice Nurse

“…They report of being embarrassed because of the disease's localisation and of a great impact on their social life (Philp et al . ). Additionally, talking with healthcare professionals is perceived as a negative experience (Jefferies & Clifford ).…”

“…, Philp et al . ). There are limited studies that address women's experiences with healthcare professionals and their expectations for optimal support.…”

“…Women with vulvar neoplasia suffer from a high number of physiological and psychosocial symptoms (Senn et al 2013a), due to the disease itself and the side effects of treatment. They report of being embarrassed because of the disease's localisation and of a great impact on their social life (Philp et al 2016). Additionally, talking with healthcare professionals is perceived as a negative experience (Jefferies & Clifford 2009).…”

“…Additionally, talking with healthcare professionals is perceived as a negative experience (Jefferies & Clifford 2009). Study results suggest that women receive little or inadequate and conflicting information from healthcare professionals (Janda et al 2004, Senn et al 2011, Philp et al 2016. There are limited studies that address women's experiences with healthcare professionals and their expectations for optimal support.…”

“Promoting continuity of care”—Specialist nurses’ role experiences in gynaecological oncology: A qualitative study

“…This is reflected in problems related to body image or sexuality (Grimm et al., ; Sekse, Hufthammer, & Vika, ). Affected women express feelings of isolation and unmet support needs (Philp, Mellon, Barnett, D'Abrew, & White, ). Gynaecological cancer survivors also report problems in their close relationships, and feelings of insecurity and anxiety (Hsieh, Chen, Hsiao, & Shun, ).…”