Hello
at the end of June this year I underwent some urgent tests for head and neck cancer which included a CT scan with contrast, which flagged up a 3.5cm acoustic neuroma. I was then send for another “deeper” ct scan (what that is I don’t know). I then had an appointment last week with a neurosurgeon who told me it isn’t an acoustic neuroma, it’s a large right CP angle meningioma (29mm by 18mm). And that there is compression of the underlying brain stem and cerebellum but no reported hydrocephalus. he then told me surgery could be high risk so did an Urgent referral to thestereotactic radiosurgery team for their opinion And if it was deemed too large for radiosurgery, then we will discuss surgery.
I now have a telephone appointment with him on Tuesday and I’m nervous as hell wondering what he’s going to say their decision is!
HI Longshanks04
a warm welcome to the online community. Sounds as though you have been through the mill of late.
My personal experience of supporting my late husband G lies with Glioblastoma not meningioma so I'm sorry my knowledge is limited here. I do empathise with your nerves. They are only natural. Not knowing the whole story is a thousand times harder than knowing the facts.
What I would suggest is that between now and Tuesday's appointment is that you write down all your questions/fears/concerns and have those notes with you for the call. These initial calls can be quite overwhelming so you might want to have someone listen in with you to make sure you are supported throughout. The notes will help keep you on track and make sure that you don't forget to ask about something that is concerning you.
This is safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a huge virtual hug and lots of positive thoughts. Hope the call goes ok.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
