29th June 2010 - Meeting with Mr Kay, Neurosurgeon, QE Hospital

Mr Kay started by asking Deb what she understood the current position to be. Deb explained that she thought, following the review of her case at the Multidisciplinary Team Meeting last Tuesday, Mr Kay was to re-examine the MRI scans and make a decision as to whether surgery was an option. Mr Kay said that it wasn't quite like that. He would take us through the scans, describe what could be done and then Deb had to make the decision.

The Scan showed not only the grade IV parts of the tumour we had been looking at previously, but also some further high grade areas in other parts of the tumour (this was new information to us). Mr Kay showed us what part of the tumour he could remove and explained that he would insert Gliadel Wafers into the cavity left by the tumour. If we went ahead he would scan Deb next week and operate the week after. He said the decision needed to be made now. If no action was taken the tumour would look dramatically worse in a month or so and surgery would no longer be an option. He said this was a serious situation and options were limited. Deb was between "a rock and a hard place".

Mr Kay described the risks associated with Brain surgery. The tumour is close to major blood vessels and nerves and in the worst case Deb could lose speech, movement or bladder control (that's nothing new!!). He emphasised these risks were very low. He was not worried about the operation but more concerned about the effects of the Gliadel Wafers which could react with the brain. Also the wafers would be close to the ventricles in the brain which contain cerebral
fluid. If the chemotherapy leaked into this fluid it would be of concern.

The positive factors for carrying out the operation were that the tumour is in the non-dominant side of Deb's brain. Deb is young and has responded well to the Temozolomide and there are other chemotherapy treatments that could be used when the tumour re-occurs.

Mr Kay expects the operation to last about 4 hours if everything goes well. Deb would spend 5 days in hospital. She would have a scary haircut and a big scar. During the operation, and for a time afterwards her steroid dose would go up but hopefully this would be reduced back to her current level. In fact, the operation should improve the steroid position and Deb may be able to get off them altogether.

To reach the tumour Mr Kay would have to go through healthy parts of the brain but he did not consider this to be a problem.

Deb has seen Mr Kay twice before to discuss surgery. On both occasions he has said it was not a good option. I asked him what made it better now. He said that at the current time it was the
best way of dealing with tumour progression and was an effective method of delivering high doses of chemotherapy direct to the tumour site.

Deb has considered the position and decided to go ahead with the operation. The only drawback is that the proposed date clashes with Sam's graduation so Deb will discuss with Claire, Clinical Nurse Specialist if there are any issues with delaying it for a week.