Low Grade Brain Tumour diagnosis

[Discodai1980]

Hi, my partner has recently been diagnosed with a 3cm, Grade 2 Low Grade Tumour of the temporal lobe. She had an MRI for other reasons, so it was picked up by chance. To be honest the news has hit us extremely hard. My partner suffers from sever health anxiety as it is so hearing this news has destroyed her. We have also been told that the tumour showed up under an initial MRI 10 years ago but it was never mentioned, as you can imagine I am very angry about that. The Neurologist has not been unable to reassure us in any way what so ever. We have been told we will have to wait until January to see someone face to face. We have no idea if 3cm is big, if it’s grown 3cm in 10 years does that mean it’s unlikely effect her, at what size would she start noticing symptoms. She explained to the Neurologist that she is terrified that she will drop dead at any time which she replied “ it’s unlikely “ .. which wasn’t exactly the answer are looking for. I’m just feeling a little lost really, has anyone had any experience with similar sized (3cm ) tumours, are we right to be consumed by this news, is there likely any immediate danger to her, is it likely that this is benign ?

Sorry for such a long post , any advice would be appreciated as I just don’t know that to do or say to reassess her.

regards

Dave

[Dymphna19]

Hi I was diagnosed in 2019 with Menigioma and have been on watch and wait since then with regular MRI and a nurse contact if i get more symptoms. My tumour is growing very slowly and on the whole I am keeping fairly well though do get tired. Sometimes I worry that I will get a sudden really bad symptom. You need to write down some questions in readiness for consultation in January. I have also found The Brain Tumour Charity to be a great support. I know its hard but try not to worry too much, do some enjoyable things to distract yourselves. Hope all goes well in January. All the best x

[Discodai1980 in reply to Dymphna19]

Hi, thank you for the reply. I am sorry to hear what you are going through. I really appreciate you taking the time to reply and try to put my mind at rest a little. I think we are finding the lack of support after the diagnosis difficult to deal with, so it’s very reassuring to hear that there are options out there , people for us to talk to etc. I wish you all the best in your situation and thank you again x

[Mattjp73]

I have a astrocytoma grade 2 been on watch and wait regular MRI diagnosis in 2017 but if there happy with your growth and haven’t suggested surgery I had a large tumor removal of the frontal lobe on there recommendation the other one is inoperable but started to get a lot more headaches the inoperable tumor is starting to grow and trying to change grade so been on chemo but not too make you worry at least with watch and wait caught it and gave chemo I wouldn’t worry to much as long as you feel good in your self just keep on rolling I’ve been working part time just keep notes of any changes there’s an app which I use from the brain tumour charity called Brian handy for recording any changes everyone’s different

[Blinglover]

My Son was diagnosed in May this year with a slow growing low grade tumour and we are meeting with the consultant in a week's time. It has rocked us all and as a mother the level of fear is indescribable. It is apparently located deep and therefore likely inoperable so we are just praying it will remain low grade and not give him any issues. At only 33 (and recently married - found out 3 week's after the wedding - nice eh!!) he's carrying on life as normal. Sorry to hear of your partner's diagnosis and yes very usual to be scared. Wishing you (& us) all the very best news we can hope for. 🙏

[Callumsully in reply to Blinglover]

I've just turned 33 and I found out I had the same 3 months ago. We are the same age and have the same type of tumor so happy to have a chat if he needs somebody to talk to who understands ☺️

[Discodai1980]

hi all, thank you for your responses. Sorry I am so late replying, I gave myself a break from the internet as the google rabbit hole was driving me mad. I’m so sorry to hear of the anguish you are all going through. We finally had our appointment with the neurosurgeon and his team today, they were great they gave us all the information we wanted, but I don’t think anyone can ever put your mind at rest .Unfortunately, due to the size, they only option is surgery. Luckily ( if you can call it luck ) the tumour is in a place that is easily accessible so removing it shouldn’t be too complicated and she won’t need to be awake ) which we were really panicking about ) .They are hoping the surgery will be in the next couple of months. Obviously we are both extremely stressed, it’s only natural, but it does at least give me some comfort to know there is a plan in place. The tumour showed in 4 previous scans but was missed on each occasion, but I don’t have the energy to be angry about it, I’m just thankful they found it before it could do more damage. Other than the anxiety this causes her main symptoms are focal seizures, which she has regularly but she is now taking lamotrigine, hopefully it keeps these under control. Thanks again for all your responses.

[Callumsully]

Hi,

So my low grade Glioma is also in my Temporal Lobe and is 4.5 CMS, so a bit bigger than your partners. It's my assumption that low grade Gliomas grow very slowly the fact it was spotted 10 years ago (is disgraceful) BUT a good sign that it is benign. I have no idea how long mine has been in my head but long enough to develop Temporal Lobe Epilepsy which is a secondary condition I have to now live with. It took me ages to get a face to face but once I did it was good to speak to specialists, like you I haven't found much help from my neurologist he just gave me meds and says me seizures are random. My neuro surgeon on the other hand is fantastic, he gave me a second MRI to check for any sinister changes which concluded none, so I was told I could leave it under constant review with frequent MRIs but I opted for surgery to remove it which he agreed was a good idea. my wife is finding it difficult as you are and she has health anxiety but has been very strong Dealing with all of this, (i was only diagnosed with the tumor in October) I'm not medical professional so cannot give you any advice but hopefully my experience helps in some way. Callum

[Discodai1980 in reply to Callumsully]

Thanks Callum that is really helpful information, Katie has the same Temporal lobe epilepsy which she is taking lamotrigine for. I appreciate you taking the time to reply and wish you the best in your recovery. Dave

[Callumsully in reply to Discodai1980]

Yeah the Epilepsy is brutal, but if I hadn't of developed it and had my first seizures it could have been years before I eventually found the tumor so in one sense, I'm almost greatful for it. I'm taking Keppra for mine, hope everything gets sorted for you both soon

[Outtatheblue]

Hi Dave,I'm sorry to hear about your partner 's diagnosis..

but if I can offer you both any good news...

I'm a 48 year old male..and out of the blue I had a seizure while in bed asleep in August,and was taken to Hospital..after scans was diagnosed with the same tumour as your partner..5cm's in size..and was told ot was a slow growing one.

I Had a 4 month wait for surgery..which went well.

I'm waiting for an appointment to find out if any follow-up treatment is required..I'm healing and feeling positive..so if I can offer you any positivity in this situation..please know you're not on your own..there is hope..and this type of brain tumour is more common than you think!..all the best x

[Discodai1980 in reply to Outtatheblue]

Thank you for the response. It’s obviously awful to hear that other people are going through it but I’m so glad I posted on here to put my mind at rest. We have been told surgery should be in the next 2-3 months. We are very much looking forward to getting that little b@stard out and hopefully start living some kind of normal life again. I appreciate you taking the time to respond and share your story. Your positivity was very much welcomed. Dave