12 March 2018 - Cancer Centre, Old QE Hospital

Deb today after visit to hospital

Met with Dr Sanghera to discuss results of the scan Deb had on 23 February (her 45th) and possible future treatment.

We discussed how Deb had been feeling since the last appointment. Then Deb had decided to do nothing for 2 months as she was asymptomatic. It was felt that she could have a break for a couple of months feeling well before the treatment started. However for most of the time since Christmas Deb has been unwell. First she had the flu with a persistent cough and sickness. One night I woke up to find her limp and unresponsive in bed. The GP came out the next day and after tests said it was the flu and not the tumour. After feeling sick for weeks Deb then started to be sick. I mean being violently sick without warning. I mean just sitting up in bed and spewing all over the duvet cover. For about a week she could not eat anything without bringing it straight back up. The GP said this could be a bad infection or it could be due to the tumour and prescribed steroids (dexamethazone) to reduce any swelling in the brain.  Deb eventually managed to keep some of this down and the sickness gradually subsided. Throughout the 2 months Deb has been weak, often having difficulty getting up and down stairs and also very dizzy. (GP thought this may be due to her low blood pressure).

Dr Sanghera examined the backs of Deb's eyes (ok). We reviewed the latest scan. It is difficult to quantify but you could see significant signs of tumour progression. The tumour is located in apart of the brain (right frontal lobe) which can accommodate significant growth before symptoms are apparent but Dr Sanghera thought that the inability of Deb to deal with her infections, her increased dizziness and the sickness could all be due to the tumour. At the current rate of growth Dr Sanghera thought that without treatment Deb would experience significant symptoms in 3 to 6 months. These may be increasing headaches, dizziness and sickness.

Dr Sanghera thought that there were 4 options for treatment:

1.    Do nothing again and monitor tumour progress. Not really an option in my opinion.

2    Start chemotherapy (PCV). Dr Sanghera was not very enthusiastic about this option. If patients do not respond well to temozolomide ( and Deb hadn't this time) then typically they did not respond well to PCV (10 - 20% chance of slowing tumour growth).

3.    Surgery to remove mass from the tumour.

4.    Radiotherapy. As it is 10 years since Deb's last course of radiotherapy, this could be repeated. 

Dr Sanghera's view was that surgery may well be the best option. After that we could look at other options to deal with the remainder of the tumour, perhaps radiotherapy and/or chemotherapy.

As a next step we will discuss the surgery option with Mr Kay the brain surgeon and we wait for an appointment date. 

We were unsettled by the new direction. We had gone to the hospital expecting to start chemo and came out thinking about surgery. It is also disconcerting that last time we discussed surgery with Mr Kay he did not think it was appropriate as Deb was well. This time Dr Sanghera is saying surgery is appropriate because Deb is still well and could tolerate the operation better. We shall see what My Kay has to say.