Experience of a Testicular Cancer Patient Support Group

Publisher Summary This chapter discusses the experience of a testicular cancer patient support group. In 1992, in response to a perceived need, 70 patients registered since 1986 were invited by letter to form a patient support group. Most wished to remain on the mailing list and about 30 patients with their partners attended the inaugural meeting. It was agreed to hold formal meetings one evening per month, and there are usually about 15 attenders including partners, with higher attendances on special occasions such as a fund raising barbecue. Attenders comprise equal proportions of patients treated by radiotherapy, chemotherapy, or surveillance. It has become apparent that stage 1 seminoma patients treated by radiotherapy need as much support as teratoma patients receiving chemotherapy. Partners gain as much support from the group as do the patients. The time of greatest need is between the orchidectomy and results of histology and staging becoming available. An informal network of support has evolved outside of the monthly meetings to support individuals during critical times. To meet some of these needs, the group has established a 24-hour answerphone and is producing a leaflet to be given to new patients at the time of diagnosis.