How were you told about your/your lov... - The Brain Tumour ...

The Brain Tumour Charity

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How were you told about your/your loved ones brain tumour diagnosis?

Shannon_TBTC profile imageShannon_TBTCPartner6 Voters
5
I was told in a private space
5
I was able to have a family member/friend with me
4
I was given time to ask questions
3
I was told sensitively
7 Replies
BirgitAllport profile image
BirgitAllport

Via phone and I quote "you didn't have a stroke, you have a meningioma. That's a form of mostly benign brain tumor. If you want more information, just Google it. You are discharged from the stroke clinic and referred to the neurosurgeon. Good bye."

KazBlue profile image
KazBlue in reply toBirgitAllport

I had similar so callously The doc was a total ass.

Ka_mum38 profile image
Ka_mum38

I was sent a referral letter to see a neurosurgeon and that’s when I realised, sat on my own at home, that they were now thinking tumour!

I was told over email three days after Mum was in emergency. It couldn’t have been more unprofessional. And they told Mum she needed surgery or would die without her having hearing aids in (they wouldn’t accept battery delivery) and refused to explain anything or even giving her time to think.

Sarky profile image
Sarky

I was told over the phone by another neurologist. He phoned me whilst my neurologist was on maternity leave & I'd just had my 3rd mri done. He explained all 3 scans were reviewed & they'd come to the conclusion that I had a meningioma. He said he was telling me this as he thought I should know everything. I was out for lunch with a few friends when I got the phone call. I'm now at the stage where I'm waiting to see the neurosurgeon to decide what the next step will be. I know my brain tumor is only 1.3cm at the moment & can grow to 5cm, its a very slow growing tumor & hasn't grown since the first mri was done, so I guess that's reassuring. It's just one of those things life throws at you. Got to try stay positive about it.

KazBlue profile image
KazBlue

I didnt get any of the above as was told rather carelessly over the phone while I was outside a hospital with my partner in surgery. The doc didnt check if I was sitting down or nothing.

Louloubella70 profile image
Louloubella70

None of the above,phonecall from a nurse who had sat in on the meeting of specialists.Told I have a low grade glioma,that was it ,no further help or advice. Appointment with neurosurgeon was a waste of time,he was totally uncaring,I was told it's inoperable as near the brain stem,and that my bad headaches are not associated with it .He suggested my GP refer me to neurology for primary headaches. Beyond understanding,he just didn't want to listen,now waiting for neurology app whilst trying to manage worsening headaches.

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