20 March 2018 - Meeting with Mr Kay, Neurosurgeon, QE Hospital

Queen Elizabeth Hospital Outpatients Dept.

This was a very bleak meeting with Mr Kay, Neurosurgeon and Claire, CNS. Mr Kay started by asking Deb what she understood the current position to be. She responded by explaining that following the last meeting with Dr Sanghera, we were here to discuss surgery as an option for treatment.  Mr Kay went on to discuss the risks of surgery. As for the first operation the tumour is close to the ventricles (which contain cerebral fluid) and other important structures in the brain and therefore all of the tumour could not be removed. Mr Kay stressed that because this was a second operation the postoperative risks were higher and these may include problems with the wound healing, a build up of fluid and inflammation of the brain (encephalitis) and a real risk of Deb not being mobile and spending her last months in hospital. He also said that the operation would not improve Deb's current condition, it would give in his words 'local disease control'. by that I think he means by removing some of the active tumour it will slow it down and give you a bit more time.

Chart showing possible outcomes from operation

Mr Kay drew a chart like this showing the possible outcomes from the operation.

Blue line - best outcome - Deb's condition remains as now for a time before declining.

Yellow line - no operation - Deb's condition gradually declines with time but she has a longer relatively good quality of life.

Red line - possible outcome from operation - Deb has post op complications and declines rapidly. Her life expectancy may be the same but her quality of life is poorer. 

Mr Kay said the decision was Deb's. He could not advise what to do. This was a decision where the positive and negative factors were equally balanced and it was up to Deb. I said that this was an impossible decision for Deb to make. I wanted more understanding of the benefits and downsides to make a pragmatic rational decision. Mr Kay said this was not a technical decision. It depended more on the type of person you were. Did you want more intervention and take the risk of possible complications or would you rather take the relatively good life you have now and run with it for as long as you can.

I said our decision is coloured by what happened last time. Deb had the operation followed by chemotherapy and 8 years of good quality life later is still here. Mr Kay said that Deb's longevity was not because of the operation and showed us this chart which we have seen before.

% of people who have survived with GBM v. survival time in months

The graph shows that 60 months (5 years ) after diagnosis only 2% of people with GBM are still alive. This graph only goes up to 5 years, Deb is off the scale. The reason for that is unknown it is a combination of the type of GBM Deb has and the way it has responded to chemo/radiotherapy. The operation just debaulked the tumour and did not effect growth rates.

Claire said we should go away and make the decision about surgery in the next few days. They will of course implement whatever decision Deb takes. If Deb does not go ahead with surgery there is still radiotherapy and/or chemotherapy to be considered. 

Below is a copy of Claire's notes about the meeting:

Tomorrow is my 70th birthday. I am glad we cancelled the party, I don't think we would have been much fun. Sam and Kate are here for the weekend. We will have a family discussion and Deb will decide what she will do.