'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.

Thinking of you and your DD today

I hope you got some answers yesterday and a plan of action xx

Have just read this and couldn’t leave without sending you best wishes.
You just sound amazing - your daughter is lucky to have you.💐

You poor things, I can't imagine what you're going through I hope you get more answers and a treatment plan soon.

Thank you. The consultant confirmed yesterday that they think (still not 100% sure) that it's a tumour called an ependymoma (anaplastic) We've been referred to Alder Hey for an MRI today to check to see if there's been any spread to the spine . Tomorrow she's having a lumbar puncture for the same reason. So feeling very anxious. It's so hard to practically cope with too - thank goodness for the support of friends who are helping out with childcare and lifts without which it would have been impossible to get to appointments. Feel really sick and tearful and so worried about what the scan might show. Thank you so much everyone for your support x

Thank you Zoflorabore! I may well take you up on that offer of a coffee!

Diege. I've been there with my nearly 16 year old son (different brain tumour). He was under the care of Addenbrookes. It took them weeks to finally decide what type of tumour and the grade. He had already started treatment when they finally confirmed everything.

It is a truly shocking and terrifying time for you all. To have to watch your child face such things is unimaginably hard. Whilst we were waiting for final diagnosis my son said to me "if it's bad news you won't leave me will you?". He was frightened of facing it alone. "Never, my boy, I shall stay right by your side whatever".

I hope treatment gets started quickly for your DD and that it's a gentle journey for her. Please ask me anything if you think my experience might help.

Thinking of you.

Thinking of you both

Thinking of you are your dd OP 

My thoughts are with you and your daughter. I hope some sort of plan in put in place soon. x

Thinking of you both. Unfortunately I no longer live near the Walton Centre/Alder Hey so I'll have to leave the coffee to Zoflorabore, what a lovely offer.

Just to update where things are up to! Had MRI and lumbar puncture last week. MRI was clear so no spread to spine or tumour regrowth that they are aware of. Will get the lumbar results in clinic today.
We've been given the option of proton therapy in Germany or radiotherapy here, prognosis pretty identical and because of where the tumour is the usual side effects of chemo re affecting healthy tissue will be limited anyway. Have had to decline the proton as with 5 other children and work can't physically go abroad for 8 weeks. Of course if the prognosis was better with proton I'd find a way, but happy with radio taking everything into account.
Consultant thinks the tumour is indeed an ependymoma and because its all been removed (unusual for these tumours) she said she thinks it can be cured - great news after all the doom mongering we've had! So (very) cautiously optimistic for now!

Thats great news, and hopefully she can have radiotherapy at a centre more local to you as well

Thank you! Yes the radiotherapy would be local (Clatterbridge) and they could arrange transport too...just worrying about work now but one day at a time...

DSD2 had a glioblastoma removed from very close to the brain stem a few years ago. It was horrendously stressful for everyone because it's location meant that it couldn't be excised cleanly and it was a rare case of a paediatric cancer (according to her consultant the type of tumour was more common in young children) being diagnosed in a just about adult. She had the strongest radiotherapy followed by chemo and intensive physio as surgery had affected her motor skills and she had to relearn how to use her hands etc. It's been long and hard and terrible for her as she lost a few friends who had undergone treatment with her, but she is currently clear, back at uni, moved out, had her driving licence reinstated and has a boyfriend 😀

She has been left with some short term memory issues and is easily tired, but so far so good! There were some personality changes but overall we're just happy that she is healthy. Clic Sargent were a great support to her and our local cancer centre charity have been invaluable to the family. Hang in there, even when you don't recognise the person she might becone during treatment. There was many a hurtful comment and tear shed during the journey, but we got there in the end. (DH still gets physically sick everytime she goes for scheduled checkups and blood tests) Thinking of your brave girl and your family (hug)

That seems like a really positive outcome so far diege , Wishing you all the best for her treatment.

Diege I've been following your posts and wonder whether your GP could sign you off work with stress. That would be an understatement but I guess it's the only way people can have time off longer term. With every good wish.

Thank you oldmum- yes, that may be the only option though will try and negotiate flexible working conditions, at least for the next month or so. Have an appointment to set up radiotherapy on Monday so feel like we're getting somewhere at last! Scary day last week when the latest scan was reviewed again by the new team. They thought there may have been tumour regrowth but after a further scan now think it's just bruising...

I think you may be covered by the Equality Act as you have responsibility for someone with a qualifying condition, which might give you a right to reasonable adjustments including variation of hours. May be worth talking to CAB or if you have an employee assistance scheme, or employment solicitor, or if the hospital has any advisors.

Thank you Weirdwords, I'll definitely look into that. My only issue is that I can't afford to take a hit pay-wise so will need to bear that in mind with any adjustments to hours etc.

Diege. I completely missed all of this since my first post - but have been thinking of you both. I'm glad it's sounding less doom and gloomy. Do you know what the radiotherapy schedule will be like? DH is nearly half way through his 6 week schedule.

Teddy, we'll find out the schedule tomorrow. From what we've been told it's around 6 weeks too and I'm imagining 5 days a week. How are you and your dh doing?

Hello aside from wishing your daughter well I just wanted to let you know that it is very common to get a GP note to say you aren’t fit to work under circumstances such as this. Hopefully if you are working for a decent employer this should see you through without taking any pay cut.

Just to let you know I am thinking about you as I'm sure many others are too xx

Thinking of you and your DD. Been -sort of - where you are and you have all my best wishes for you both (unmumsnetty) 🤗