Brain tumours

For people affected by brain tumours or brain cancer to get together, ask questions, share experiences and support each other

Low grade tumour and questions...

type2tattoo
Posted by

Thanks for letting us know Sue, I feel for you x x x I have a facebook friend who is in a very similar position with 2 little ones and an Oligo, she was diagnosed about the same time as my son and we are all going through it together. There are quite a few in the group Brain Tumour UK on facebook and there is a lot of support there.

 

Like you we are enjoying everyday and after all the trauma every good day is such a bonus, things have been stable with my son for a few weeks now and we are hoping they have finally got the seizures under control. I still relive the first really bad one it was so traumatic to see and a few bad ones after that. We found that laying down with him and looking in his eyes made the seizures shorter and easier for him to deal with and as a Mum its the nearest I could get to doing it for him. I wish I could take away all his pain but I can't and that has been the hardest thing for me.

 

I hope you and your daughter will visit BTUK and get the help and support I have from there. It does really help to know you are not alone.

 

Lots of Love to all Lyndsey x x x

SusieSue
Posted by

oh Lyndsey you really understand what Im going through-- yes my daughters first grand mal was SO frightening, and certainly I wish i could do it all for her as you have said.. in fact if I could have the tumour instead of her I would, I'm 53 and had a nice life but she's only 24 and just beginning hers.. maybe she wont see her children grow up.. so sad. I worry so much about her every day- we've had to come back to our home in france and left her! i feel so guilty about it but theres nothing else i can do at the moment! Maybe i wouldnt worry so much if she had a good husband at her side, but she only has a part time ex boyfriend who comes round when he pleases. or not as the case may be. It really helps to off-load on here, thanks to all for listening. I keep being sick- could it be nerves? XXX

Sam26
Posted by

Hi Fran

This may sound odd but your post actually inspired me to join the forum and engage in conversation about my tumour.

I am 26, live in London, and never expected to be diagnosed with a brain tumour (who does?!)

It all started last August - I was travelling in central America, alone, and had a tonic clonic on a bus. I woke up in hospital and the doctors were shocked when I said I couldn't possibly be epileptic and they recommended an MRI. When I got back to the UK my doctor brushed it off as a one off but the seizures continued. I remember thinking, 'I bet I've got a brain tumour' but I never really believed it.

Finally I had various MRI scans and they found a low grade glioma in the right hand temporal/frontal lobes, what shocked me was that the fits had started because of the pressure on the rest of my brain, other than that I'd never have known. It had pushed everything out of the way.

To get to the point they told me due to where it was they wanted to take it all out, or almost all, rather than a biopsy. I had an 8 hour awake craniotomy (it was near my speech/motor centres so I had to be awake) 2 weeks ago and the results were a grade 2 astrocytoma, with no further treatment yet (as it could come back & its best to save radiotherapy for when it is the only option-or so they tell me)

I am currently back at my parents' house feeling like an independance stripped teenager but except not being able to smile (I have to re-learn) and having a 1inch strip of shaved head which I can cover, and being on epilepsy meds I feel very lucky to have come through it as a young person.

I like you wanted to get it out of the way so that when I come to wanting to have children it isn't a shadow hanging over.

I also think its best to know what you are up against but know that not everyone thinks the same!!!

Best of luck if you have the biopsy. And try to stay positive, there are developments all the time. I was told that even 2 years ago they didn't have the technology that allowed them to do my operation :-)

sharwigley
Posted by

Sam,

Thank you for sharing your story - I have been looking for anyone who has had experience of this surgery, and although I am sorry you have suffered some of the side effects, I really have fingers-crossed that this will be the worst and you will make a full recovery. I am going to National Hospital in London at the beginning of May and hoping they will offer me surgery. My tumour is in a very similar place, although on the left hemisphere (and involves the speech centre as it is not my dominant hemisphere). Your story has given me a bit of hope as the first Neurosurgeon I saw, basically wouldn't do anything until I was so ill, it was almost life or death. All the best

Shar

SusieSue
Posted by

Hi Sam

 

thank you so much for sharing your experience- its given me some hope for my 24 yr old daughter for when the time comes that she'll face treatment.. I'd love to have her with me like you are at your parents, even though I understand you have lost some independance- not easy once you've left home. We mums just want to look after our poorly daughters so much! :)

 

My daughter has 2 kids- both pregnancies were while she had the tumour, we just didnt know it was there.. so I'm sure you will be able to have a family one day when all this is behind you :) Let us know how you get on, all the best with recovery from the op.

 

Love Sue XX

Sam26
Posted by

Hi Shar

I am so sorry you've had bad luck with your gp. The good news is that you couldn't be in better hands than the national in London. That's where I had my surgery 2 weeks ago, and they were amazing. The surgeons, nurses, speech/physio therapists, everyone, are all there for you, and really truly care. The surgeons know exactly what you fear and answer all the questions you have.

Just keep as positive as possible! Weirdly since diagnosis, I have become a much more positive person, especially as it is easier for your loved ones to support you if you stay strong, then they can too, and without them ithe whole process would be a nightmare!

As for children in the future, my neurosurgeon didn't say anything against, but I know that some medicafion for epilepsy doesn't agree with pregnancy, but it isn't something I've asked specifically yet.

Oh and one thing that's helped me - don't google, brain tumour stats and info are v unreliable & scary,, especially as low grades haven't been properly recorded til recently. Try astrofund and BT UK for facts.

Gooddluck with everything

Sam x

KittehFran
Posted by

Hi all!

 

thanks all for your updates and sharing your stories with us! I think it really does help and gives us all the feeling that we are not alone :)

I have seen the Neurosurgeon last week and am now having two very indepth scans in June. One MRI and a CT to see if we can get some more information. I am not sure I am going to go for a biopsy, as it is too close to my speech centre and temporal lobe (personality and memory centre). I had a very long in depth discussion with the Neurosurgeon and I just don't think its the right decision for me at this point in my life. I will continue with the meds and the Neurology department want me on 6 monthly scans but I think that's the right decision for me for now.

 

Also, for those worried about pregnancy and tumours:

As we are talking about intrinsic gliomas here, you needn't worry about the tumours being affected by pregnancy hormones (i.e. growing because of the effects of pregnancy). There is only evidence in the literature that Meningiomas do that. A meningioma is a tumour that orginates in the lining (meningies) of the brain, and is not what people have been talking about so far in the thread.

Whilst alot of the anti-epileptic medications aren't brilliant for pregnancy, the benefits must always be weighed with the risks, which will be done under the care of a Neurologist. I would STRONGLY recommend that any woman of child bearing age who is on anti-epileptics and is thinking of getting pregnant in the near future start talking folic acid supplements at 5mg/day (NOT the 400micrograms that are recommended for normal pregnancies).  If you talk to your GP, they should be willing to write you a Prescription. This will reduce the risk of Neural tube defects (spina bifida, cleft pallet) which are associated with Anti-epileptic drugs.

I have had a lot of anxiety around the whole tumour thing, but I think I am finally at peace with my decision. I might yet HAVE to have the biopsy, or even go straight to radiotherapy in the Summer, but for now I am concentrating on medical finals and waiting for scan results.

 

Good luck to everyone else who is currently going through this, keep strong! 

God bless

xxx

 

 

sharwigley
Posted by

Hi Sam,

Thanks for replying - I feel a bit better as have just had a long talk with a really good friend (who is infinitely sensible, although he knows me well enough to know that if I got any type of cancer, "it would be have to be this one").

It was the first neurosurgeon who was so negative - given that they found the tumour completely by chance (my transient symptoms were too indistinct for the GP - although this is the first case of this grade and tumour type she has dealt with), and that I feel great at the moment (not at all ill), I didn't understand why the Neuro was not "throwing the book" at this thing.

I am really pleased that you have had such good treatment at the National - they have been brilliant just with letting me know what is happening so far. They are discussing my case at the MDM tomorrow, so I await with baited breath...

For those who are interested, I have probably gone through three pregnancies (two of these with significant other health issues) with this tumour. They exacerbated my 'tumour' symptoms, but I went back to normal after the baby was born. The only question mark is over whether the hormonal shift caused the tumour to grow.

Keep getting well, and let us know about your progress when you can.

Shar

Melly13
Posted by

Hi Shar, 

I have just been diagnosed with a low grade glioma. My neurologist referred me to MDT after mri and contrast mri. I was then referred to a neurosurgeon. I saw the neurosurgeon and he has booked me in for an awake craniotomy in about 3 weeks time. My symptoms started with seizures and has progressed to a constant buzzing sound in my head. 

I notice your post is from a long time ago. How did things go for you?


Thanks

Mel

Raffa
Posted by

Hi Mel,

Came across your post whilst looking for answers about if probiotics would be useful for me whilst on PCV Chemo lol.


I am a 32yr old who in the last 5 years has had x2 crainiotomies, radiotherapy & I am currently undergoing PCV Chemotherapy. I had an Oligodendroglioma grade 2 and then it was re-graded to a 3 on my second surgery. 


Whilst never a cure I have been told that it is more of a management situation. 


If you have any specific questions I will try to answer them :) 

Swren
Posted by

Hi Mel, I hope you are doing well. I was diagnosed with a glioma back in march 2016 after a routine eye test and I had no symptoms at all. I underwent an awake craniotomy back in november and the whole experience was actually ok and not scary at all. So if you ever have any questions i will try to help you out if you out if you would like.


Best Wishes,

swren