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Life-limiting illness

Brain Tumours

4 replies

OllyBJolly · 09/01/2016 19:00

I'm hoping someone has some knowledge or experience of this.

My sister was diagnosed with a brain tumour (glioma) about a year ago following the onset of epilepsy. She suffers from PTSD, mobility problems and memory/comprehension issues which are (probably) unrelated to this. I attend all appointments with her.

The neurosurgeon said the tumour was inoperable because of location. She was to have four monthly MRIs to monitor growth . At our last meeting with the neurosurgeon in August they discovered two other growths which they said were likely to be vascular malformations (I'm sure there was another word they used but I can't remember it - cavernoma?)

She had a further scan in December. The neuro-oncologist called her yesterday so I only have her account of what was said and she says she may have got it wrong. She was told the other growths are tumours. She is to go for a biopsy within the next two weeks that will be a 2-3 night stay in hospital. She will then start a course of PCV chemotherapy. The relevant departments will be in touch with appointments etc.

She sounded very calm - she says she feels she is in safe hands. I'm freaking out, but of course can't let her know that. Is this all as bad as it sounds - it seems to have escalated so very quickly?

She lives 200 miles from me and usually I'll see her every fortnight.

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Hellenbach · 10/01/2016 22:26

What a caring sister you are.

Your DS should be copied in to all letters from her consultant and these could provide an insight as to what is happening. Maybe you could ask to see them?

I have always found that getting information is very tricky. It's only when I have questioned doctors for specifics that I have got clear answers.

It's a bit chicken and egg, if you don't have the info you don't know what to ask...

You might want to know if the cancer has become more aggressive, what grade it is, what the response rate for the chemo is.

I find the more I know the better I feel, good luck.

OllyBJolly · 10/01/2016 23:43

Thank you.

I do get all the letters (because DSis laboriously types them out and emails me!) but because this is a phone call I've not been party to it. I'm worried at such a dramatic turnaround from previous communications.

Thank you for these questions and the pointer about being specific. That's really helpful. I might give the consultant's secretary a call and ask if I can email him. I'm conscious these people are incredibly busy and although he's been so generous with his time on previous occasions I don't want to take advantage.

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Pythonesque · 12/01/2016 06:51

If it seems appropriate and your sister would benefit, you might be able to ask to be specifically copied in to communication, with her agreement. Especially if she has known memory issues.

"Watch and wait" is often a useful strategy in determining what treatment and when to actually use it. But difficult when the mode switches to "ok lets get on with it". Hope things become clearer and go ok.

OllyBJolly · 12/01/2016 22:22

Thanks, Python. We were talking about me having power of attorney just so I have authority to talk on her behalf. Guess we should organise that sooner rather than later.

You're right - "watch and wait" was the exact phrase the consultant used in the early days. I'd thought that might go on for years. This is all a bit quick.

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