Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Sons Brain Tumour

Roxy21163
Posted by

My son (33) complained of headaches and strange de ja vu feelings to his gp who referred him for an MRI which was done on Thursday 6th June 2019.  We were told 10 days for results but the next day 7th June we got a call from GP who called us in to tell us the hospital had contacted her and she informed my son he had a brain tumour and that it was being discussed at an multi disciplinary team on Tuesday 11th June and we should hear back a day or two after that.  WELL WE DIDNT!  So the GP called the hospital on the 14th June to be told that the first meeting it was decided they need another specialist onboard, and that they were going to another MDT meeting on wednesday 19th june, and that someone would ring my son wednesday afternoon from the hospital.    Now on Saturday he received a letter calling him to an appointment at neurology on the 18th June to discuss "his headaches and slight seizures"  no mention of a brain tumour. so

1. Is this normal procedure for the hospital not to actually inform you its a brain tumour, but let your GP do it?

2. Is this appointment at Neurology, maybe the hospital actually informing him officially its a brain tumour?

Just seems to be all confusing to my son.

“I am so clever that sometimes I don't understand a single word of what I am saying.” – Oscar Wilde
Madesp
Posted by

Hi Roxy21163

Im sorry you find yourself in this awful situation (as myself also)

Sounds like the letter may have been written before the Mdt meeting. It is normal for GP to give you results if it was GP that requested the MRI or referred your son for tests. 

Sounds also they unsure what type or grade of tumour they are looking at. So sometimes the MDT meeting will consist of many medics in this field and they plan where to go from here. 

Some tumours may be given the watch and wait approach. Some they may want to do biopsy first then decide whether to operate or not  and some tumours they see and may decide to go straight in and operate to get as much out or all if they can. It depends so much on which part of the brain is affected. It's so complex and The MDT meeting adresses all these concerns so that they agree on best course of action for your son. 

I am the mother of a 34 year old with a brain tumour and am a little bit further down the line in this situation as this all began Sept 2018  for us. Please feel free to ask away as this forum is so good for getting first hand experiences and information although I would just say no  two tumours are alike so there is bound to be differences in treatment and experience. 

Your son should go to appointment as sounds like they may need to see him and gain more info about his condition  before the next MDT MEETING. 

Hope your son turns out to be a  benign tumour and that all goes well for him.

Best wishes 

Mad 
Roxy21163
Posted by

TY Madesp for your reply.   That makes sense about the neurology appointment...You were very helpful

“I am so clever that sometimes I don't understand a single word of what I am saying.” – Oscar Wilde
Roxy21163
Posted by

OK latest is sons appontment today 18th June with Neurologist, we have just been phoned and told neurologist looked at list of patients coming into today and asked why had an appointment been given to my son for today as everyone knew this was going to a 2nd MDT meeting on wednesday 19th.    So as we expected cross wires at hospital.     Oh well hopefully wre shall hear more tomorrow afternoon after the MDT meeting.

“I am so clever that sometimes I don't understand a single word of what I am saying.” – Oscar Wilde
Madesp
Posted by

Hi Roxy21163

Was just wondering if things were moving onwards for you and in the right direction hopefully. 

Mad 
Roxy21163
Posted by

Hi,

He saw the neuro surgeon on Tuesday 25th June, who showed us the MRI and told us obviously a brain tumour.  He is to have a biopsy within the next week and then a 10 day wait for the results.  So hopefully by mid July we will know what we are dealing with.  He also awaiting an appointment with neurologist about medication for seizures.

TY for asking Madesp. x

“I am so clever that sometimes I don't understand a single word of what I am saying.” – Oscar Wilde
Roxy21163
Posted by

JUST NEED TO RANT

So when son saw neurosurgeon on 25th June he signed the consent form for a biopsy, got all the info and told just needed to have a perfusion brain study and pre op and then the biopsy would be done.

So on 8th July we took him back to MRI Department for the Brain perfusion study as requested by a letter.   on 9th July he had his pre op appointment..ALL GOOD SO FAR

So today 10 july he gets a call asking for him to return for a third MRI on 16th july as they missed something!!!!   So after a phone call to sons tumour nurse he finds out ooops they forgot to do the brain mapping thing required for the biopsy!!!!  Seems last 2 MRIs that should have been done BUT WASNT.  Then the nurse says can he attend an appointment with neuro surgeon again as they need the consent form doing for his biopsy!!!  So my son just hit the roof, said iv already signed this on 25th June and has a copy to prove it.  So nurse says "Oh right erm neuro surgeon cant remember you signing it.

This is sending my son up the wall hes has known about this tumour for 6 weeks and has been told and shown its a large tumour, hes having small seizures every day, Headaches every day.   His own GP got a letter from the neuro surgeon that had slightly inaccurate info, like that he only has had 4 headaches since began (untrue), that he has had a couple of seizures (untrue).   

Rant over just been a bad day for him 

“I am so clever that sometimes I don't understand a single word of what I am saying.” – Oscar Wilde
Madesp
Posted by

His

Your poor son must be losing confidence in them too. We all know that NHS is stretched to the limits but this is rediculous. So they know that it's a large tumour and early indication shows possibly it's non malignant or they'd have gone straight in and done resection or debulk. Don't quote me on this though. 

Do you mind me ask where in the brain is the tumour and are his eyes or vision affected? 

Also early indication if non cancerous is the MRI will not contrast. But just from what you read and hear. 

Hope they get their act together for your sons sake. 

Mad 
buttercup01
Posted by

Btw, if  u  need a REALLY  good rant, go to the Room. This is a group for doing just that. I've done it several times !!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Roxy21163
Posted by

his tumour covers some of paretial lobe and also some of temporal lobe. Latest is he attended for a biopsy today (19th July) neurosurgeon came to talk to him said after the new mri/ brain lab, that they recommend debulk rather than biopsy as its so large and looks like its a oglio hopefully grade 2. So no biopsy today. Debulk next Thursday as they need a specialist team to observe nerve reactions as the op will have to partially have to go from front where all the nerves for legs and arms are and they don't want to paralyse him.

so big day next Thurs 25th.

“I am so clever that sometimes I don't understand a single word of what I am saying.” – Oscar Wilde
Madesp
Posted by

Hi Roxy21163

Thanks for the update . Wishing you all the best and hope goes well. My son was up but in a wheelchair  the next day having coffee in the hospital restaurant downstairs and later that same day walking unaided. Please keep us posted so we can support you with our experience so in some way you will be prepared. Please also ask away anythings else the docs don't tell you! 

 

Bye for now x

Mad 
Madesp
Posted by

Hi Roxy21163 

Thinking about you as I too am mother of son with Brain Tumour. 

Wondering how op went. 

Wishing you all well and hopefully they say it's benign. 

Mad 
Roxy21163
Posted by

i

son had debulk 25 July, most removed. Biopsy results will be during week starting 5 Aug. The op went well, tho he has developed partial sight in left eye, and weakness in left arm and leg. So physio and occ therapy to come and he will need constant supervision for a few month's.

“I am so clever that sometimes I don't understand a single word of what I am saying.” – Oscar Wilde