A 44-year-old man presented to primary care with left scrotal ache and a left testicular lump on self-examination. Approximately 1 month later he underwent inguinal orchidectomy. Histological examination revealed a stage I mixed germ cell tumour, pT1 (embryonal carcinoma with 10% seminoma), with negative margins. Tumour markers before surgery were alpha-fetoprotein (AFP) 3 μg/l (<7 μg/l), human chorionic gonadotrophin (hCG) <5 IU/l (<5 IU/l), lactate dehydrogenase (LDH) 8.2 μkat/l (<7.18 μkat/l). He had little relevant medical history.
After surgery his LDH level decreased to 6.26 μkat/l; histology results and radiological staging suggested that his treatment options included adjuvant chemotherapy (reducing the risk of recurrence to 4-5% but increasing the risk of early and late adverse effects) or surveillance (with an associated risk of relapse between 15% and 50%). Both result in identical long-term overall survival.
After multidisciplinary team (MDT) discussion and considering the balance of risks, the patient chose surveillance. He preferred to avoid chemotherapy unless absolutely necessary and wished to return to a normal day-to-day life as soon as possible. He understood he may have to return to chemotherapy later if relapse occurred and that it might be a longer course, especially if relapse was not detected promptly. Surveillance commenced later that month.
Appointments involved a blood investigation to monitor tumour markers, a chest X-ray or CT scan, and a short face-to-face appointment for clinical examination and discussion of results and of new or ongoing symptoms. The patient was in full-time employment, highly motivated and capable of managing his illness, but he needed to miss a day's work to attend appointments.
He was given an informed choice between standard follow-up and shared community follow-up, both described below. The patient chose community follow-up. He had a health promotion discussion, was provided with the log-in details for an online patient-reported outcome measures (PROMs) questionnaire (called QTool), and was given a bespoke follow-up schedule detailing the approximate dates of future assessments (Figure 19.1).
The patient has been in community follow-up for 20 months, reporting online his general health, back pain, testicular self-examination, and levels and causes of distress. His tumour markers and radiology indicated no activity from his cancer.
Eight QTool evaluations revealed no self-examination changes; however, they did reveal changes in other outcomes (Figure 19.2). Initially, QTool revealed poorer general health, mild back pain and increased emotional distress due to feelings of sadness, regret about the past, and inability to access spiritual support. Distress levels improved over 6 months; when elevated, discussion revealed that the main sources were surgical (discomfort in the inguinal scar/remaining testicle and back) and psychological (due to his present social context: fatigue, regret about the past, memory/concentration problems). Back pain reduced by the 5th month but increased in the 8th month. In parallel, the patient's general health decreased and distress levels increased (due to breathing difficulties and work issues). The patient was recalled to clinic and investigated but no relapse was found.
The patient ...