I've got a brain tumour. AMA

[FoldyRoll]

Brain tumour AMA

Sorry this feels like a stupid question but I don't really know anything about tumours; will the cancer eventually kill you? Sorry if it's too sensitive a question..

Oh FruitCider that's so awful. Imaging now is much better - it may not have been possible to pick up a small tumour when it started causing seizures back then. My seizures were violent enough that I ended up in A&E, so they gave me a CT scan as standard. It was initially declared clear and I was referred for an appointment at the epilepsy clinic. However when I landed in A&E again the next day someone with keener eyes reviewed the CT and admitted me for monitoring and an MRI.

As you know, different parts of the brain are used to different extents. If a tumour grows in a less used part, like the temporal lobe, it can get really quite large before causing any symptoms. This may have been the case for your Grandad?

My tumour is in the frontal lobe in a narrow strip that controls bodily movement. Obviously it's very heavily used and every cell counts. It's a mixed blessing because it means that it caused seizures almost straight away so was picked up quickly (it's so tiny that even when doctors point to it on a scan, I can't spot it!). But it means that removing it would most likely paralyse me. Treatment now is to stop it growing for as long as possible because at some point it'll be necessary to risk paralysis to prolong my life. The medics seem to half hope a different treatment might come online in the meantime.

I don't think I have come to terms with it really. The situation is so much better than it could have been, and I have to focus on enjoying life and being here for my kids for as long as I can. No doubt when it gets more aggressive I'll panic.

Bernie I'd say the opposite! At least we can both see the positives in our own situation Can I ask what type of tumours you get? Also, isn't pregnancy a huge risk for making any sort of tumour grow much quicker? How did you handle that?

TacoLover not at all! Yes, barring any altercations with busses, this will eventually kill me, but thankfully my life expectancy is measured in years rather than months or week.

I'm so sorry OP. Xxx
If/when it affects your ability to.manage, please apply for PIP and talk to local authority for suppport. You'll fall under the physical disabilities team and Care Act 2014 legislation (you can look.uo.catr act eligibility criteria for eligible for support, and even if you don't quite yet meet it they can offer signposting advice)

Anyway, you said ask you anything. How are you coping? Have you had good support from the neurology dept? Counselling? Practical support?

How do you feel when you go into the MRI scanner? You must have to have a lot of scans?

Really interesting thank you

Do you have support from the team looking after you? is there a specialist nurse? Dh was diagnosed with a brain tumour called an ependymoma 18 months ago, he was given the diagnosis then just sent on his way! The surgeon says there are too many risks to operate so they are just monitoring with MRI scans every 6 months. Thankfully so far its behaving itself but of course at some point it will change. We find it hard to find sources of support, especially as this is a relatively rare tumour for an adult (nearly always found in kids).

They big one I had removed was a vesbuliar schewema ( that’s not spelt right ino) they used to call them acoustic neuromas coz they sit on the hearing nerve hence why they had to cut it to get it out. I have another one on the other side but they don’t want to do anything yet as if they do I will be profoundly deaf but that is pretty much expected. Not really sure what the others are if I’m honest no I have some in lining of my brain.

They never said to me anything about pregnancy. In my first with dd I was prenatally tested and dd has the same condition so the fussed over us massively and stressed my out. Coz it rare and people don’t no that much about and then they made stupid things like I might not be able to push or have a c section. With my ds we haven’t had him tested yet because it caused unnecessary stress.

I had been told after I had surgery to removed the big tumor if I wanted to start a family it was a good time to consider it as the other rumours were quite stable

Whereismumhiding thanks so much for the info. I'm on ESA, but it only lasts for a year so ends soon.
I'm coping much better than I'd have ever have thought I would with a situation like this. I've had depression for many years and this whole episode has made me realise how much I do want to live and how precious mundane day to day stuff is. It can be frustrating to be worn out by chemo or have a really bad memory etc, but I'm just happy to be here.
The local neuro-oncology department is amazing. We have 4 dedicated nurses we can call any time, a monthly support group meeting, and access to specialised physio, occupational therapy and psychological support if needed, but I've not required the specialised support yet. Living in a big city means I'm lucky enough to also be able to access more general cancer services like Macmillan and a Maggies Centre, which is fab. In terms of practical support, as I'm not allowed to drive any more, the local council has given me a free bus pass which means I can still get out and about.

Mrsmorton I have an MRI every 3 months, and will continue to do so after treatment to monitor tumour growth. At the moment they're fine. A bit boring, but they play music of your choice and some scanners even have a TV to watch to cover the noise. They're much more spacious than you might think. You couldn't sit up in there, but it's not claustrophobic; it'd be considered a luxurious amount of room on a crowded commute! Once treatment is over and we're just watching for growth I might start to get 'scanxiety' as the old lags call it.

missyB1 yes, as above, we have good support here, but I know that people with low grade tumours on watch and wait protocol can feel abandoned. I feel for you both. The most useful support for me has been the group because everyone there understands and we can offer each other tips and experience. It's also attended by one of the specalist nurses and other team members. It's organised by the Brain Tumour charity. Perhaps there's one in your area that your DH (and you) could go to? www.thebraintumourcharity.org/get-support/support-groups/ There are also Facebook groups, but they can be a bit of a moan-fest. My tumour is also a rare one, so I had to find an international one specific to it. Lots of it is focused on US healthcare systems, but they also have lots of great research info and advice. There are also Facebook groups for partners where you can share worries or vent with people who are in the same boat. I hope you both get some more support soon.

Bernie You're awesome.

@FoldyRoll you absolutely rock, sister.

Thank you for the thread

foldyroll and you too

Thank you both!

My Dad passed from this. They said it was inoperable as brain stem location. I've since seen by accident (you tube flicking) a couple of US documentaries saying that the most successful approach is surgery first then chemo/radiotherapy to nuke whats left (they can often get 90% of it with no damage to brain) . One man had 7 small tumours at once removed & is now fine. Would you look at US as a 2nd opinion or option if £ available?