8 September 2009 - Appointment with neurosurgeon, QE hospital

When Deb was first diagnosed, following her biopsy we saw Mr Kay, the Neurosurgeon and discussed surgery. He advised that surgery was not the best option. Since then Deb's case has been raised several times at the QE multi-disciplinary team meetings and each time the surgical option has been reviewed. As a year has now passed and we have had number of MRI scans Deb and I asked if we could meet Mr Kay to review the position with regard to surgery.

We met Mr Kay on 8 September. He started by asking what could he do for us. Deb was slow to respond so I started to speak and he shut me up and said he wanted to hear directly from the patient. This was good. Deb said that we had discussed surgery a number of times with Dr Sanghera but it had been ruled out and we both thought it would be useful to speak directly to Mr Kay.

We started by looking at a scan from May 2008 ie when Deb was first diagnosed. Mr Kay showed us the total size of the tumour, the Grade IV abnormality (where the biopsy was taken from) and the oedema (fluid) in the brain around the tumour site. He then showed us the last scan (from July 2009). On screen he measured the bulk of the complete tumour and showed that over the period of Deb's treatment the tumour had reduced in size by 10%. (He said 10% may not seem like much but in volume terms it was a lot. I did some calculations and using the formula for the volume of a sphere worked out that if the diameter reduces by 10% the volume reduces by 27%). He showed us the differences in the grade IV abnormality. In 2008 it showed up all white on the scan where the contrast medium was used (indicating a large blood supply to this area and lots of growth). In 2009, although the area was about the same size the centre was now completely dark showing necrotic cells with a lighter edge. He also compared the level of oedema between 2008 and 2009; again this had significantly reduced.This was all good news showing Deb was responding very well to the treatment.

Mr Kay then showed us the part of the tumour he could remove by surgery. This was about 40 to 50 % of the tumour located on the right hand side of the brain and included the grade IV abnormality. He said at this time there was little advantage in carrying out surgery. As we have been told before he said that there were abnormal cells all around the tumour and removing this one area would not improve Deb's prognosis. The removal of some bulk may improve fluid flow within the brain and allow a reduction in steroid dose. But if this did happen the reduction would only be minor and Deb would still have to take daily steroids and would have the same side effects. Mr Kay considered the operation to remove this part of the tumour to be relatively low risk but any brain surgery is potentially hazardous to the patient. He quoted the examples of Seve Ballesteros and Senator Kennedy, both who nearly died during surgery on their tumours.

Some brain tumours can develop 'cysts'. These can develop very quickly and cause local swelling. Or the tumour itself might start to progress more rapidly. Under these conditions surgery may well be appropriate.These issues would be kept under review and if at any time in the future conditions changed, the surgical option would be reviewed.

I said that throughout Deb's treatment we had concentrated on the grade IV abnormality. The biopsy sample was taken from there and after each subsequent scan this is the area we have concentrated on. I asked that as this was the area of most concern wouldn't removing it at this time, while Deb was still well, 'buy us some more time'. Mr Kay said that because Deb was so well and obviously responding well to treatment it was not the right time to operate. If the tumour progresses or Deb deteriorates then at that time we should reconsider surgery.

Mr Kay ended the meeting by saying he didn't propose to call us in again but he would see us at any time if there was an issue we wanted to discuss with him.

This was a good and positive meeting. I thought that if anybody had to operate on my brain I would choose Mr Kay.