'Mass' showing on dMass showing on MRI brain scan - please help

[diege]

After fruitless visits to the GP with my daughter (age 17) about her crippling headaches, we were sent to the hospital after a regular eyesight test when an optician saw swelling behind her optic lenses (Thursday). She had an MRI scan yesterday morning which showed a 6cm mass to the front right hand of the brain. DD currently in hospital having steroid treatment to reduce some of the swelling around the mass so that they can properly assess the type of mass before discussing options. Devastated and so anxious as to what might happen next. Has anyone experienced anything similar and can help me make sense of this all? I'm really struggling and feel so alone (I have 5 other children and was widowed 2 years ago). Thank you.

I’m so sorry you’ve had this news and hope the next weeks bring hope and a positive treatment plan.

I’m so sorry

I am so sorry. The fact that it is accessible is a huge plus.

Oh god dieges I am so sorry you didn't get the results you'd hoped for.

You are clearly doing a good job of focusing on the positive factors and taking one step at a time. That is fantastic -
and continue keeping away from Google!

There are still so many unknowns and already you found things that go in your precious dd's favour. I will keep thinking of you and keep hoping that you find lots more things to add to your list of positives.

I hope too that you have lots of support

I'm so sorry but keep focusing on the positives. Hope you're both doing ok xxx

So sorry it wasn't good news.

I'm so sorry @diege

I'm going to drop you a PM as a friend of mine has had similar/same tumour and there may be some useful info for you xx

I can't stop thinking about you all - I hope you're ok xx

I have no experience of this type of tumour but I am relieved that it's not a giloma as you first thought. I've been through this with my husband and if you can please try and see the positives- operated and removed, easily accessible, grade 3 shit yes but not grade 4. Positivity as hard as it is. I know you don't want to google but actually there will be some FB help groups And you will see positive outcomes.

Diege how are you and dd? Been thinking about you

We're still waiting to get the full results through so that the sub-type of the tumour can be identified (Bluewidow, it IS sadly a glioma and at least stage 3). Once we know the genetic make up this will help determine the treatment path , plus where it takes place 😊
Dd is quite subdued and not coming out of her room much, although has been a bit more sociable with her siblings these past few days. I just feel numb and trying not to jump ahead to the future!

Thank you for all the positive thoughts! It helps to know we're not alone. I have no family support (parents have quite openly said they have given all the support they can) but do have a small circle of fab friends - plus a (newish) partner who is being absolutely amazing!!!- but mumsnet has always been my ' go to' in times of crises!!!

diege you are experiencing the most challenging time any parent can experience and seem to doing so with such strength although I can imagine at times you feel you have no strength left to pull. I'm so glad to hear you have a partner to share that weight with.

You DD also sounds absolutely amazing. Crossing every finger that she pulls through and you can all resume your life. Even people reading but not posting will feel lklike giving you a big hug, so collectively, it's a massive warm embrace for you and your DD.

Still here - still keeping track and still thinking about you all @Diege

Diege 💐
Has DD been in touch with any support charities at this stage?

My dd is my hero. I am humbled at how she's taking this in her stride. She's been out to see a friend today (first time out of the house since getting home from hospital) and I'm do proud of her.
I've had very little signposting to services (a friend has mentioned one website) so if anyone does have any info regarding online support or otherwise for dd it would be gratefully received!

Hope you find some support here xx www.thebraintumourcharity.org/get-support/

www.headway.org.uk/about-brain-injury/individuals/brain-injury-and-me/
I don't know if you're aware of this charity but they're good for signposting what support is out there for you and putting you in touch with professionals and individuals

beta.clicsargent.org.uk/

I’ve encountered Clic Sargent through work and they have been a huge support for families

So sorry to that you Dd is going through this, and you too. There's a charity run by some friends of mine who offer support and advice. brainstrust.org.uk

brainstrust.org.uk/ Hope I've managed to do the link

I’m so sorry wishing your DD well.

You poor thing. Please remember to take care of you - speaking from experience, it's likely that after things have calmed down (to whatever your new normal is), you'll suffer a come down. I think it's often harder mentally in the people watching, caring and "managing" the situation.

Do you have access to a support nurse? They're a great field of information and help - although I'm not a hundred percent sure if you get one if not under the care of an oncologist. We have a neuro-oncology support sister who is a breath of fresh air.

The brain tumour charity are useful - they have a pack you can apply for online with basic info. Apparently Mcmillan are very helpful in terms of benefits. They're next on our list to hit up.

Happy to chat if you need someone.

Compelled to post after reading thread. I'm so sorry, life deals shitty hands sometimes. It's humbling- it's so clear the amount of love and respect you hold for DD. I balked at your families stance, you need their support more than ever.

Good luck, I'll be watching the thread and hope you get some good news before Christmas. DD needed a prompt heart op at same age your DD is, and the hell experienced was palpable - yet infinitesimal compared to what you and DD must be going through.

Also for support try the children’s trust, they have been a great support to us and support children and young adults.