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Starting to panic

25 Nov 2017 17:31

Apparently 2 of my brain tumours are meningitis am waiting for 1st huge one to be taken out,they are going to leave the 2nd.3rd one is a trigeminap schwannoma on my brain stem ,only learned of this today after receiving a copy of a letter from my neurologist to my GP. How can they get rid of this without Surgery?

What is It?  

Is it likly to be related to a phone mesage from the hospital haem onc dr asking me to come in on the 11th?

Life seems to be falling apart ,thought 5 years of even 40 years clear of leukemia might have entitled  me to a long awaited discharge not sure how much more of this I can cope with. To top it all I am informed that as the tumours are from past dxt I can look forward to more growing...starting to think stoppng after the 2 weeks palliative chemo in the 70s might have been kinder.... wonder if they can whip out my fibroid at the same time,as has been growing since they took the last one out in 99 !


Re: Starting to panic

27 Nov 2017 16:04 in response to Midnightfish

Hello midnightfish and thank you for your further post

You explain that two of your brain tumours are meningitis but I think you mean meningioma. If this is the case, you can read more about this type of tumour by clicking here.

Trigeminal schwannomas are usually benign tumours that arise from the nerve sheath (covering) of cranial nerves alongside the cerebellum and brainstem.

As a nurse led service, we are unable to recommend treatment. This needs to come from your specialist team as they are familiar with all your medical details.

But if the other tumours are very small doctors tend to monitor them to see how they are behaving.

You wouldn’t have a fibroid removed at the same as brain tumour surgery. Your doctor would tend to refer you to a gynaecologist for advice on this.

I hope this helps.

Best wishes,



Re: Starting to panic

27 Nov 2017 17:59 in response to CRUK Nurse Celene

Tumour 1 massisiv takes up right side of head tumour 2 small on top of brain going to moniter . both meningirma planning on removing no.1 before Xmas  (am having sleepless nights about waking in itu being out of control, very screamish Re intercranial pressure moniter,.    The other is on my brain stem think they're going to use gamma radiation knife as surgery not option  very frightening