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.

18 August 2016 - At home

Kate's Graduation 26 July 2016

After our last visit to the QE, Deb's case was discussed at the Multi-Disciplinary Team meeting at which it was decided to delay the onset of any treatment, The delay troubled us and I contacted Claire to find out what was said at the MDT. This is the email exchange:

From: Chris Eaton [mailto:chris.eaton@live.com]
Sent: 08 August 2016 08:03
To: Claire Goddard
Subject: Deb Eaton

Dear Claire,

Sorry to bother you but I am feeling a little anxious after Deb’s last MRI scan.

When we saw Dr Mead the radiologist's report indicated that the GBM had returned and further treatment would be imminent and necessary. Now we have decided to wait. I wonder if you could tell me the outcome of the MDT meeting and why delaying the onset of treatment is considered appropriate.

Many thanks

Chris Eaton

Morning Chris….

I am so sorry about your anxiety.

To be reassured this is very early recurrence.

Mr Kay was not at meeting and the general opinion was that there was no need to rush into treatment and spare Deb from treatments and side effects for  as long as we can.

But for completeness Dr Sanghera is going to write to Mr Kay to gain his opinion as he was the original surgeon.

(Surgery is often done when a patient is symptomatic and a good surgical target is available)

Deb is currently well and is asymptomatic and small target for surgery.

The radiologist reports the scans and make recommendations however I would suggest the best recommendations come from team caring for Deb and who know her and who are attending the meeting so consultants….Dr Sanghera and radiologists and surgeons as a group looking at history and imaging and past treatments and current performance of Deb.

I am sure Dr Sanghera would be happy to see you in clinic and discuss if that would make you both feel more at ease…..

He is on holiday next week but could see you after then?

Let me know and happy to organise

Best wishes

Mrs. Claire Goddard
Macmillan CNS Neuro-oncology

Neurosciences OPD
Neurosurgery - University Hospitals Birmingham NHS Foundation Trust
Queen Elizabeth Hospital, Queen Elizabeth Medical Centre,
Birmingham, B15 2TH

Deb has received letters for two appointments:

1     Tuesday 23 August to see Mr Kay, Neurosurgeon
2     Thursday 1 September to see Dr Sanghera, Consultant Clinical Oncologist

I will update after meeting with Mr Kay