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New here. Bit scared. Just been given some news.

nuitstar
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Hello everyone,

I feel like a bit of a fraud being here, as what I’ve been told I have isn’t cancer (I don’t think) but a tumour. So, I am sorry if this isn’t the best place for me but I have found some info on this site about meningiomas, and I am feeling really confused and a bit scared. 

Two weeks ago life was  fine, but I collapsed at work. The whole office was spinning when I came round and I couldn’t really speak. My colleagues were amazing. I thought it was a migraine though. So my hubby came and took me home, went to bed and although felt dreadful the next day went to work. 

I am normally really good with words (my job is in marketing and communications) but the following days after I couldn’t get my words out. I could write but just couldn’t get them out. I also felt totally light headed and dizzy. But, I thought it a migraine. I have a strong family history of them. 

Five days past and nothing changed so I went to my GP and was immediately sent for an urgent CT scan. I live in central London so was at a pretty hectic one very late at night. (Bless the guys and girls who work there - they are incredible). I discharged myself after a CT at 3am as I was feeling very unsafe on the ward (long story but involved armed police and a very unwell patient) and wanted to be at home. So didn’t get the results that night but was told my GP would have them the next day.

Four days later and I’m sat with my GP telling me I have a tumour. 

It starts to explain the random migraines I’ve had over the past 18 months. My constant feeling sick for a few months now I guess. But, I need to see a neurologist urgently. 

I am waiting to get a private appointment next week (the snow seems to have made everything go slow!) but am sat here feeling very, very distant / sad / confused / angry and not in control. 

I have told my parents and husband, sister and best friends who are all in shock. But being incredible. I am so lucky. 

From reading up online it sounds like it’s so big issue and I am annoyed at myself for feeling like I do. 

Can anyone relate to this? My mother is a breast cancer survivor and I saw what she went through. I’ve lost six family members to cancer and I feel like a fraud being here. But, I am scared. And this is new to me.

Has anyone here had treatment for a meningioma? I’d really welcome some advice if anyone had. 

Thank you you so much in advance x

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    Hello nuitstar.  I cannot help you with meningioma but just wanted to welcome you here and to say you might like to ring the website nurses (Freefone 0808 800 4040) who work Monday-Friday 9am-5pm.  That is not a great help as they now won't be at work here until Monday and I know you are worried now but you could make a note of their number in case you want to use it.  I note that you have already seen the meningioma information on this website and don't want to cause you any further concern but I thought the attached information was quite straightforward and helpful so am attaching it.  I also hope that someone reading this post will be able to talk to you about meningioma.  Annie

    www.uhs.nhs.uk/.../Meningioma.aspx

  • Offline in reply to Annieliz
    Thank you, Annie. That’s really kind. I’ll have a read of that as well.
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    Hi Nuitstar,

    I see that you are fairly new to our forum, so I extend a very warm welcome.

    I am sorry to hear about the troubles that you have been having and of the diagnosis of meningioma. Tumours can be malignant or benign. The best way to tell is by taking a biopsy, but I suspect that this may be more difficult with the brain than with other organs in the body. The neurologist that you see next week may be able to explain things better for you.

    My advice would be to draw up a list of questions before your consultation and take someone along with you to all of your appointments to write down the answers. It is always a scary time waiting for results and most of us here can empathize with all the emotions you mention, as we have had them ourselves at some stage or other throughout our cancer journey. You can also access previous posts on meningioma by going up to the blue banner at the top of this page. Click on the search button, add meningioma and this will show previous posts on the same topic.

    I hope that the neurologist can shed some light on this. Please let us know how you get on? We are always here for you whenever you want to talk.

    Kind regards,

    Jolamine xx

  • Offline

    Hi,

    You may have already read this, you mentioned online research, but there's a good explanation of your condition at www.cancerresearchuk.org/.../meningioma

    Someone else has explained that tumour just means "a growth" and that without a biopsy they can't tell whether it is malignant or not. It doesn't really matter either way as you don't ant any type of growth in your skull as it will put unwelcome pressure on your brain. 

    Good luck with your appointment!

    Dave

  • Offline in reply to davek
    Thanks Dave and jolamine. Got to chase the neurologist tomorrow. A weekend of nothing but trying to keep busy, with it in the back of my mind. Not fun.

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