The Mass Effect

Notes of meeting with Mr Kay, Consultant Neurosurgeon and Professor Jones, Consultant Oncologist on 08 July

Brain Tumour Update

Appointment at Queen Elizabeth Hospital, Birmingham – Neurosciences Clinic.

Date : 08 July 2008

Meeting with Mr Kay, Consultant Neurosurgeon, Fred Berki, McMillan Clinical Nurse Specialist

Mr Kay confirmed results of the biopsy, parts of Deb’s tumour are very aggressive. (Tumour type: glioblastoma multiforme – a grade 4 glioma tumour). We then discussed possible removal of part of the tumour (30-40%?)

Advantages of removal are that it would create more room and reduce “mass effect”. It may also reduce the requirement for steroids.

Disadvantages of removal are that it would not improve survival time for Deb. Like any operation there would be risk of infection and also stoke and epileptic fits. Could also mean at least a 6 week delay in radiotherapy/chemotherapy treatment. Deb made the decision not to go ahead with surgery.

Prognosis – Mr Kay said that this tumour was the most aggressive type but there was a wide range of outcomes. The average life span was from diagnosis was between 1 year and 18 months. However, many of the people who have this type of tumour are much older and have a shorter life expectancy. Others last 4-5 years or longer. Each person is different and reacts differently to treatment.

Mr Kay said we should be positive for the following reasons

1 Deb was young/fit and healthy and that makes a big difference to the outcome. Many of the people who die within a few months of diagnosis are much older.
2 That from the period of the first scan to the biopsy scan there was no apparent growth in the size of the tumour.
3 That there is a good chance that the tumour will respond to treatment.

We then met with Professor Jones who is the Consultant Oncologist who will now put a treatment plan together for Deb.

Reviewed the various scans on the computer and tumour was bigger than we thought. It is deep in the brain. The scans revealed that most of the tumour was benign, low grade and only a small portion was of the aggressive type. Radiotherapy will hopefully stop the tumour growing and sterilise a very high proportion of the cells. But because of the enormous number of cells there will be a few left that will not be eradicated. It is how rapidly these surviving cells re-grow that determines the effectiveness of the treatment.

We discussed the proposed treatment which will consist of both radiotherapy and chemotherapy.

The Treatment Plan

Radiotherapy will consist of Deb attending the QE Hospital within the next 7-10 days to have a plastic mask made for her head and neck. The purpose of the mask is to ensure that her head is in the same position every time radiotherapy is applied.

CT Scan will then be taken with mask fitted and a plan of treatment will be drawn up. Marks will be made on the mask to indicate where radiotherapy needs to be applied.

We will then meet with Professor Jones on Tuesday 29th July to discuss the treatment plan he has devised (ie amount of radiotherapy and chemotherapy).

Radiotherapy - is likely to be 30 treatments over 6 weeks Monday to Friday. Possible side effects – tiredness, hair loss, skin irritation, headache, stroke.

Chemotherapy – Temozolomide (Temodal)
Fred Berki and Professor Jones will this afternoon put an application in for funding (£12,000) from the PCT for Deb to be given this drug for her treatment plan. The drug is only prescribed at present for patients with brain tumours following surgery. But, Professor Jones feels that it would be beneficial for Deb to have this drug and hopes that the application will be successful given Deb’s young age and lack of symptoms from the tumour.

The chemotherapy will be taken every day in pill form during radiotherapy and for then on monthly cycles for at least 6 months.

Possible side effects – sickness/vomiting/constipation. The drug also affects bone marrow and white blood cells so there is an increase risk of infection or bruising/bleeding.

Reduction in the tumour will not be evident until some months after therapy when a CT scan will be taken.

Professor Jones stressed that this tumour was not a classical Glioblastoma in that most of the tumour was low grade. He was therefore positive about the outcome of the treatment and mentioned that he’d had one patient survived for over 10 years.

We’ve talked about all of this with Sam and Kate which is an enormous amount to take on board. We’re all positive. We need you to be positive with us and I know you all will be.

16 June 08

Saw Kerry for pre-admission screening at QEH for the biopsy which will be carried out on Thursday the 19 June. Discussed whether biopsy would be carried out under general or local anaesthetic. Lying awake for an hour with your head clamped in a frame while someone drills holes in your skull does not sound an attractive idea so Deb opted for a general anaesthetic. Deb will have a piece of her head shaved. They will attach the frame to her head in 3 or 4 places. She will be scanned in the frame to provide accurate location for the tumour for the biopsy. She is likely to be discharged on the Sunday and we will get the biopsy results in a couple of weeks.

Deb gave urine and blood samples and was screened for MRSA.

17 June 08

CT scan 09:15 QEH.

18 June 08

Deb admitted to hospital for biopsy - Ward East Lower A, Green Zone. Called in early so MRI scan could be carried out but in the end this was not done. On admission saw locum Dr Lawrence Riley. There will be CT scan tomorrow to get coordinates to pin point position for the biopsy (active parts of the tumour). We talked about the risks associated with the procedure - seizure and internal bleeding. The procedure itself is relatively quick but fitting the frame etc takes the time (he estimated about 2 hours).

19 June 08

Biopsy due to take early in the morning but postponed because no anaesthetist was available. We were told Deb would have to be discharged and return the following week but anaesthetist found and biopsy took place at 14:30.

20 June 08

Deb discharged at 12:30. No after effects from the biopsy/anaesthetic. Appointment made to see Mr Kay to discuss the results from the biopsy on 8 July 08.