I've got a brain tumour. AMA

[FoldyRoll]

Brain tumour AMA

is it benign or malignant?

How are you and your family coping with it all? I can only imagine the shock of being told that.

I'm so sorry
How long after your scan were you told the news?

Can I join ? I had big one still got lots of little one

what were your symptoms?

How long have you had it?

HmmGrey It's grade 2, so low grade (used to be called benign). It will progress to a grade 3 / 4 (formerly malignant) over time.

lostlalaloopsy Pretty well overall. It was an awful shock when we first found out and thought I would die very soon, but the biopsy results showed it wasn't the worst case scenario, so we relaxed a bit and now it's become more normal. It's an awful lot of work for DH. He does everything at home, works full time and has to do all the driving now too.

boopsy yes, 2 tween/teen DC. We've been honest with them throughout and I always try to be as open as possible in an age appropriate way. My tumour can't be removed, but I have had 30 sessions of radiotherapy (M-F for 6 weeks) followed by a year of chemotherapy. I'm still having chemotherapy at the moment.

Peachpebbles no need to be sorry, but thank you for the flowers and cake! They told me within a couple of hours of the scan. It was only 4 days from first symptom to diagnosis. It all happened over a weekend otherwise it would have been even quicker. Got to love the NHS!

Bernie Of course! waves and clutches you to my bosom Are you getting support and in touch with other people with BTs? I've found it makes all the difference.

Clairetree A series of seizures involving paralysis, lots of pain and collapsing. I'd never had a seizure before, then had several in 24 hours. Apparently this is the most common way for brain tumours to be discovered. It happened last summer. The neurosurgeon couldn't say how long it had been there, but thought probably 'a while, possibly years'. So of course you look back at things that have happened and wonder if it was the tumour or not but there's no way to know.

So sorry to hear this OP. Do you have a wide network of people to help you out , e.g. neighbours? I always wonder whether wider communities step up in the harder times.

They certainly do gower. I've been completely humbled and moved by how everyone has rallied around. Something like this really opens your eyes to how wonderful people are and how much you are loved.

Yes and no I have got a condition which causes Tumor growth they are benign but will have Tumors all my life so just try and get on with it coz the people I have met with the same condition seem to let it consume there life and that’s not the way I want to live.

I know what you mean Bernie. Do your tumours need treatment or would that mean a constant merry go round of surgery and chemo?

Has your personality/behaviour changed as a result?

Does it hurt? My mum died of a secondary brain tumour and would never tell me if she was in pain. I miss her so.

mistermagpie I think any changes I've experienced have been down to treatment. Your brain is under assault and it drastically reduces the number of stimuli you can cope with. It should improve with time but right now I zonk out if several people are talking at once or lots going on. I have no ability at the moment to filter out unimportant stimuli like a blinking light or dog barking and get a bit irritable probably. However, the effects on personality, memory etc all depend what part of your brain the tumour is in.

MollysMummy I'm so sorry to hear that . There are no nerve endings in the brain, so brain tumours don't hurt at all, unless they are so huge that they are increasing pressure in the skull which would cause headaches. I think secondary tumours tend to be several little ones rather than one big one. I don't know what your mum's primary cancer was, but doubt her secondary brain tumours caused her pain. If it's any comfort to you (it is to me!) a BT is supposed to be a relatively gentle way to die.

Thank you. It was bone to lung to every where and she never complained. Very quick at end so didn’t really get my head round it.

I had surgery in a large one which was 3by 4cm I think 🤔. They don’t use chemo with the condition I got. So it either surgery, gamma knives, or if you meet a certain criteria they use a drug called avastin but if the tumors are causing problems then they just leave them and monitor them. I have also got ones on my spine

OP and Bernie... and best wishes x

Mollys, sorry for your loss. I hope you're ok.

Thank you

MollysMummy I'm sorry for your loss too. That must have been so hard for you and your family.

Bernie that sounds tough. Good for you for not letting it take over your life.

Thank you. I do have my moments where I think what the hell and I’m definitely more Parnoid if I feel unwell worrying that it’s down to the tumors but generally I think I get on with it.

Keeping fingers crossed for you OP.

Can I ask how would you feel about relative stranger neighbours calling in on you? A lady in my street I know has both children far away but is fairly private, (I went to high school with her son). I took over some sweet pea from the garden when I heard about a month ago & spoke to her & she seemed grateful but I'm wary of being intrusive, while wanting to show support. Was thinking I could drop off some cookies tomorrow if we bake with dc.

I like how you described the brain being under attack & you can't deal with too much stimuli, that makes sense for a variety of conditions.

When do you finish treatment?

That's a lovely idea buckeejit. Very thoughtful of you. Of course everyone is different, but I think virtually everyone appreciates a kind gesture like that. If you do go in, I'd suggest keeping the visit brief, especially if you have DC with you.

I'll finish treatment in January, but will have to re-do everything and probably have awake brain surgery when the tumour starts to grow again or becomes more aggressive.

OP, my grandad died from a deep brain tumour in 1989, and I miss him every day. His tumour was missed - his GP never sent him for a brain scan when he started having seizures and just diagnosed him with epilepsy. I don't know the full ins and outs as I was a child at the time but I know when he was diagnosed the tumour was absolutely massive and already pressing on the respiratory centre of his brain stem, he died a few weeks later.

I'm assuming yours is inoperable because of where it is? Where abouts in the brain is it? I studied neurobiology so find this kind of stuff fascinating!

How did you come to terms with your tumour?

💐

foldyroll you seem like you have been hit by it a lot worse than me. The operation was a few years ago now. I have becoming hard of hearing ( they cut the hearing nerve when the did the operation), have slight facial palsy which I get Botox for ( but not atm as in breastfeeding my son) it generally that’s easy stuff to get along with in comparison to what you are currently dealing with