23 August 2016 - Neurosciences Outpatients dept, QE Hospital

Saw Mr Kay, Neurosurgeon and Fred Berki Clinical Nurse Specialist (and key worker) at clinic this morning.

Mr Kay discussed the latest MRI scan and the changes seen in the area of the tumour in Deb's right frontal lobe. Mr Kay said that the changes had been taking place for some time (about a year) but were still small. He thought that, as Deb was well and symptom free, surgery was not the appropriate choice at this time but consideration should be given to a course of chemotherapy in the first instance. He suggested that the tumours needed to be about four times their current size before surgery would be considered. He discussed the risks associated with surgery, especially as the tumours were close to the ventricles in the brain (vessels containing cerebrospinal fluid.)

I asked some questions:- if operation went ahead would gliadel wafers be inserted again, steroid dose after op, how much tumour could be removed, new tumour is slow growing does that mean it is not grade IV? (answer - growth is slow at the moment but could take off at any time)

I felt Mr Kay was offhand with us, I don't think he had read the notes and had only looked at the scan just before we arrived. He wasn't operating so he wasn't really interested.He didn't like me asking questions - perhaps with some justification, my questions were all about an operation that wasn't going to take place. I don't care about his manner the outcome of the meeting was good. Growth is slow, the tumours are small and surgery is not appropriate at the present time.