'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.

Teddy- yes we have a neuro-oncology specialist nurse who is lovely but quite evasive!
Thank you everyone for your words of support and the signposting to support resources - really helpful, thank you.
A bit of an update, though confirmation Thursday when we go and see the consultant. Tumour confirmed as high grade though they think stage 3 rather 4. No link to a chromosome deletion which sounds good but actually means it's less straight forward to treat. There thinking it might be a subtype of glioma called an ependymoma and if so, might be treated with proton therapy (in Germany - not sure how that would work out practically!). So hoping for more detail Thursday 🙏

They're thinking - sorry, can't let that one go! 🤣

Sorry to hear that it was more serious than the consultant was hoping, OP. Hope the time passes quickly until Thursday and you get some news on the treatment going forward - always nice to know what you are dealing with.

If you are in the UK, and your dd does need proton treatment, then she might end up going to Manchester where they are just starting treatments. Before they were up and running, UK patients usually go to Jacksonville, Florida for treatment with protons - the NHS pay for flights, hotel and living expenses for patient and a parent for the duration. It was originally Switzerland but asking people to live in a non english speaking country for 6 weeks was really hard

That's really interesting CMOT, thank you. We're north west of England so Manchester would be far easier. It may not of course be confirmed on Thursday as the type of tumour they're thinking, but I am already worrying about the practical implications of treatment far away as a single parent of 6 with no family support 😩. Must stop rushing ahead and slow my (overthinking) mind down!

I'm so sorry your dd is going through this - and you and her siblings.

My eldest son was diagnosed with a medullablastoma - tumour in the cerebellum. He was nearly 16 when diagnosed. So a very different type of tumour. I understand the sheer terror you must be feeling. I too was humbled by the way my son faced his battle - for him unfortunately he passed away 27 months later. However every tumour is treated in different ways, every patient reacts differently. And therefore one persons outcome is not necessarily another's.

Take each day as it comes.

Write everything down. Be led also
By your daughter's wishes - my son wanted to be very much involved with every discussion and wanted to be able to make decisions for himself.

I found the teenage cancer trust helpful, the Brain Tumour charity too.

I do hope that the consultants can start treatment as soon as possible and that ultimately your daughter has a long time ahead of her.

Here to answer any questions you may have.

Thank you minmooch, Im really touched by your words and Im so sorry that you sadly lost your son 🙁
That's good advice to write everything down. I have been jotting down bits and pieces on random scraps of paper, but will get a notebook and start something more comprehensive. Plus I can look learned when sitting across from the rather stern Consultant! 🤨

💐

So the Consultant rang this afternoon and said the full results won't be back until early next week 😩 Feel really frustrated, especially after dds mood had visibly improved thinking we might get some news this week 🙁

The waiting is purgatory, so so difficult to concentrate on anything when you having a virtual ten ton weight of anxiety hanging over you.

Ah, sorry to hear that the appointment/news is further away now.

Having seen that you are in the NW, there is also the Walton Centre in Liverpool which is a specialist neurosurgery hospital (although no proton beam yet in Liverpool).

Sorry for you and your dd. Hope you get some positive news soon x

Thanks everyone 😊
Sass, it's the Walton centre where we've been at - know it far too well sadly! 😩

I'm one of their 'alumni' myself tbh, for different reasons Is the parking still bad, we used to use the hospital next door for that?!

Well I don't drive and tend to get the train, but when I do get a lift they have a nifty overspill car park that has served its purpose well. Catering facilities still rather...limited 🤣

I’ve been following and wanted to say that I wish you well. You and your DD sound amazing and strong. Take good care of yourselves. Hope you have lots of support in real life.

I hope you've had some news so you can make some progress. Thinking about you x

Thank you for all the support; it really does mean a lot.
We've had some more results back (still one set outstanding) They think dd will be treated as a paediatric patient (the subtype of tumour, possibly an ependymoma) is seen more usually in children) and possibly with proton therapy. Will find out more when we go in for an appointment (hurrah!) on Tuesday 😅

Keeping you all in my thoughts

Just read through this thread, keeping your family in my thoughts

Good luck for Tuesday OP, will be thinking of you.

I've been thinking about you today xx

Have just found this thread and wanted to say I am thinking of you and your daughter - I hope today brought answers and a plan of action for you both

Another one here thinking about you today 💐

Read the full thread and just wanted to wish you and your dd well.
I'm only a couple of miles from the Walton Centre and of you're ever in need of anything at all then please message me if you feel able to. I have an almost 16yr old and cannot imagine what you're going through.
Honestly if you need a strong decent coffee or some food etc I am more than happy to
drop off to you, not sure if you will be bringing dd for treatment there or not but I'm even closer to Alder Hey.
In my thoughts