Brain Tumour

So, following symptoms of permanent headache (for weeks/months), vision problems, memory lapses and speech issues, I was referred by GP for a CT scan & told the same day that I had a brain tumour, a meningioma. Referred to neuro specialist who says he 'doesn't think it is' and that it couldn't possibly be causing symptoms as it is at back/top of brain and looks more calcium related. MRI scan 1 month. So where does this leave me in the mean time? Anyone had any similar experiences? Is a brain tumour cancer (benign) whatever it's made of? Feeling very vulnerable and emotional, dare not tell family as it would scare them.

  • Im waiting to find out if I have Nose cancer - So I know that worry and fear your feeling. 

    From reading what you had put down - I'd say specialist would know better, there is hope for you right there.

  • Thank you for your reply :-) Let me know how you get on, what a terrifying journey we have started. I have always been the most optimistic person ever but this has given me something to think about!

  • Hi Savanna,

    I take it you were told on the day of the CT scan that it was a brain tumour and not by your GP the day they did the referral?

    None of us are qualified medics so can only speak from experience but I'd agree with Alan's comment that the neuroligist is more likely to know

    You asked "Is a brain tumour cancer (benign) whatever it's made of?"  Just so you're aware brain tumours can, like tumours in any part of the body, be benign (non-cancerous) or malignant (cancerous).  If your neurologist does decide you have a tumour then hopefully it will be benign, certainly most meningiomas are benign.  When you say back/top of your brain obviously I can't see where it is, but the back of your brain certainly has some control over vision, still different parts of the brain manage different aspects of vision.

    I know it's a very hard thing to tell family about but it would be good to have someone you can talk to about it (in addition to us on here obviously), it is going to be such a difficult wait for you for the MRI and then for the results, it would help to have someone trying to actively distract you.  And think how you would feel if you found out a family member had gone through worry like this alone?  They will want to be there for you.

    Really really hope your scans all come back showing something benign and very treatable.  I get hemiplegic migraines and had one that lasted 3 months so I can empathise with how awful long-term headache with visual and speech problems are, I wouldn't wish it on my worst enemy.  Should your worst fears be realised, and I hope they won't, then please know that it isn't necessarily a death sentence.  I have a friend who has now been living with a cancerous brain tumour for 20 years.  In that 20 years she has gone on to have children, get back to full-time work and has a great social life.  I recently met another women also with a cancerous brain tumour and she has been around a long time with it and could go on for a long time still, she is also living a good life.  It's amazing what can be done these days.

    Best wishes, and please do help yourself by telling someone close to you.

    LJxx

  • Hey Twin -  "15/05/18 - Biopsy results - 3.5cm tumour, cancer has spread to lymph nodes, stage 2, ER+"

     

    Did you get any symptoms foe stage 3 cancer?  I know the rates are very good even for stage 3 breast cancer; 73%. Sounds like you got through it ok?

     

    Savanna - Yes, you are going to be ok, it could somthing which isn't cancer. My symptoms are clearly direct cancer symptoms, I'm terrifyied as you are.

  • Hi Alan,

    As the old saying goes "you don't get ill til you start chemo".  I had no symptoms.  Obviously I had a 6cm lump (the 3.5cm was estimated just from ultrasound, they then did further scans) but it couldn't be felt due to the frayed edges causing it to blend in with my other tissue.

    I've had chemo and mastectomy (radiotherapy to come in January) but the chemo didn't do very much in the end and I still have cancer.  I will now just be living with cancer for as long as I can.  I'm on medication to hopefully stop more tumours forming and will be having prophylactic surgery also as my cancer has turned out to be genetic.

    I'm fine.  Nothing I can do about it and I could be around for a long time yet so I figure it's best to just get on with living life.

    When do you get your results back?  And how are you coping with the wait?

    LJx

  • Hey Twin - Do not want to highjack this thread so I'll post via Msg.