The experience of long-term hospital follow-up for women who have suffered early stage gynecological cancer: a qualitative interview study

The objective of this paper is to investigate the factors involved in the wish for continuing long-term follow-up for early stage gynecological cancer in the absence of obvious clinical benefit. This qualitative study is comprised of semistructured, individual interviews. Twelve women who had been treated for early stage (I-II) gynecological cancer (cervical, vulval, ovarian, endometrial) and had been attending regular follow-up appointments at the hospital clinic for a minimum of six months were interviewed for this study. The primary outcome measures were women's views on their follow-up needs. Women who continue to express a need for follow-up appointments years after the treatment of active disease are seeking to alleviate anxiety regarding possible recurrent illness. The main element of follow-up that alleviates this recurrence anxiety is medical reassurance, this is only judged to be worthwhile when given by a gynecological consultant. There is a difficulty with regarding the period of remission as a healthy state, both cultural "lay" beliefs and family support exacerbate this difficulty. Although family support is deemed important initially, it may actually serve to maintain "sickness" identity, perpetuating views of cancer remission as another stage of illness. We conclude that the processes involved in follow-up for cancers with a very low recurrence risk are complex. Follow-up information is perhaps medical, but women who have a continued need for follow-up in the absence of any clinical disease are attending for psychological purposes. Further research is needed to study possible interventions that could be introduced to help alleviate anxiety during the period of cancer recovery.