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Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

Ds1 has a benign brain tumour

(29 Posts)
EddieReadersglasses Sun 01-Feb-15 21:30:45

Just wondering if anyone has any experience of this? Ds1 (8) was diagnosed with a benign brain tumour last week and had immediate surgery to relieve the pressure in his brain. However the tumour itself is inaccessible so the treatment plan at the moment is just to monitor him with regular scans.
If the tumour progresses then his vision would be at risk (and ultimately his life)
He's also now at increased risk of seizures though he's thankfully not had this so far.
I'm struggling to get my head round this and wondering how on earth we can carry on as normal knowing this thing is there in his head.
And how much do I tell him- it's not the kind of thing we can keep secret but how does a child deal with this sort of diagnosis?
Any advice or pointers to good sources of information would be really appreciated.

turdfairynomore Sun 01-Feb-15 21:41:53

I can't read this and not reply-although I'm not an expert and have no real pearls of wisdom. But your post brings back memories as DD had CT scan at 14 which showed a brain cyst. It turns out that she was born with it and will in all probability die with it, not from it but it was a scary time so I can sense a small fraction of your emotions. What I will say is that I taught a little girl (aged 5) and while she was in my class her brother (aged 3) was diagnosed with an inoperable benign brain tumour. By the time he was old enough to be in my class the techniques had moved on sufficiently to allow him to have surgery. He's 8 now and totally fine!

EddieReadersglasses Sun 01-Feb-15 22:22:04

Thanks fairy that would be amazing but it's right in the middle of his brain at top of brainstem so surgery will always be difficult but who knows maybe possible with technical advances in the future

TeaPleaseBob Mon 02-Feb-15 14:19:52

I work in children's hospital and we try to help parents be truthful about the children's condition. Your son is old enough that he will probably try to guess what's happening if you don't tell him which may be worse. I can only imagine how hard it must be to talk about these things with your child but I honestly believe it will be for the best.

I know there are books for children about malignant brain tumours but I'm not sure about benign tumours. Perhaps contacting Macmillan cancer support or CLIC Sargent may be helpful. They will have people you can speak to and discuss best way to share information with your son and how to make the information age appropriate.

I will say I've seen children of your sons age and younger deal exceptionally well with such news. Children can be incredibly resilient when supported well by family. I hope you find some help in dealing with situation and wish your son all the very best for the future!

HarlotOTara Mon 02-Feb-15 14:52:28

My dd had a benign brain tumour and was operated on when she was 18 months old and her tumour was on her brain stem. They removed all but 5% of it and she had scans for 10 years. The surgeon said that 10 years before (she is now almost 18) it would have been inoperable. DD was too young to understand at the time but as she got older I told her she had had a lump in her brain that had to be removed as it made her ill. I did take photos of her after her op and of her scar (was quite large), so that she would have them in case she wanted to know as she got older. She has been left with some weakness on her left side due to the surgery.

You will adapt to what has happened and take it one step at a time. Iwas always a bag of nerves for every scan in case the tumour had grown.

Pm if there is anything.

EddieReadersglasses Mon 02-Feb-15 19:51:02

tea he knows there is a lump in his brain which was stopping the fluid moving as normal (he's seen the scans too) and that's why needed operation. He knows they haven't touched the 'lump' and will need more scans but that's as far as it goes for now. Maybe that is enough at the moment. I would never lie to him and if he asks me something I will answer him hopefully in a way that doesn't scare him or make him worry.

harlot are you in the UK? Surgery has only been mentioned as a last resort as so risky. DS's tumour is right at top of brainstem (tectal plate)
Was your dc having lots of symptoms related to tumour itself when they operated or just with increased pressure?
It's great that she has done so well after surgery

HarlotOTara Mon 02-Feb-15 20:09:04

eddie my dd's tumour was on the brain stem and top of the spinal chord and was operable, they removed the top vertebrae and some of her skull although the skull grew back as she was so young. She was ill for a year really but the symptoms were gradual, not eating, gradual swelling on one side of her face etc. and it took a long time for various doctors to take me seriously. I think the fluid pressure on her brain caused her to have a constant headache etc., not that I knew at the time. It was a horrid year.

How was your DS diagnosed?
I am in the uk and my dd was at Atkinson Morley in Wimbledon which is now at St. George's in Tooting. Care after diagnosis was excellent

EddieReadersglasses Mon 02-Feb-15 22:06:49

He developed squint and headaches but was not thought to be anything sinister. We were being monitored for this at hospital when opthalmology Dr noticed his optic discs were swollen and organised urgent MRI. This showed tumour which was causing hydrocephalus hence the surgery last week to improve this and now we have to see if his eye problems improve or not. It's more than a year since he had squint picked up by optician which hopefully means this rumour is only growing slowly.
We are in Scotland and surgery had to be done in edinburgh here.

HarlotOTara Mon 02-Feb-15 22:17:51

Has he needed a shunt for the fluid? My dd was, and is, an anachronism in that her tumour was so rare and never seen in a child before and had a lot of fluid but no shunt as it didn't seem to cause a problem. I think benign tumours are slow growing and I am sure your DS will need regular scans to keep an eye on it.
How are you coping, are you still in hospital?

EddieReadersglasses Tue 03-Feb-15 14:39:21

They have done a different procedure to deal with the fluid called endoscopic third ventriculostomy which avoids having a shunt so no plastic/ internal tubes to cause problems in the future.
We are home now and will been seen back at our local hospital later this week.
Ds1 is feeling fine but not back at school yet. If his double vision continues I'm not sure how this will impact on schooling (maybe not at all)
We are slowly adjusting to his diagnosis and trying to plan what to do longer term- I'm considering reducing my working hours a bit so I'm home more but this has financial implications obviously. Not going to rush into anything I think. I'm feeling a lot calmer than I was but still worrying about possibility of seizures and sleeping in his room at the moment...can't do that forever though.

HarlotOTara Tue 03-Feb-15 16:48:49

Has he had medication for seizures? My dd had seven seizures the night after her operation which turned out be because she was so malnourished - due to not eating- that her body wasn't able to cope with the saline drip, even though the right amount for her weight. As a precaution she was on phenytoin for a while.
I can relate to sleeping in his room, dd was in with us for a long time after her op. My mum had a brain hemorrhage years ago (there seems to be a problem with brains in my family), and her eyesight was wonky for a while but recovered. Is it the op or tumour that has affected your DS? His brain is probably still Adjusting from the op.

There are so many unknowns -will you be able to get some more answers at your next visit? I think you are right in not making any major changes yet as it is early days

EddieReadersglasses Tue 03-Feb-15 18:07:16

He's not on any medication at the moment. We don't know yet if it's the tumour causing his eye issues or if the pressure was causing this- if pressure should improve but will take time ? Weeks/months
We've just got out first out patient appt through for later this week so will be asking lots of questions then. I probably need to make a list.
Thanks again harlot its really helpful to be able to ask questions of someone who's been through a similar situation (though your DDs surgery sounds incredibly complicated and must have been so difficult for you all to go through)

HarlotOTara Thu 05-Feb-15 07:05:54

I think making a list is an excellent idea - maybe write down the answers too - I find it very hard to remember what is said at hospital appointments.

It was a horrendous time especially as we didn't know if the tumour was benign until after the op. If it had been cancer my df would have died as she was too young for treatment to be an option. Although I expect treatment has changed in the last 16 years. I felt very alone as don't know anyone who went through anything similar so please ask if it helps you. I will keep an eye on this thread.

BlackSwan Sat 07-Feb-15 17:11:10

If they can't operate safely to remove it, what about proton beam therapy - is that successful with these kind of tumours? Our son had surgery and proton. I would get a few second opinions.

EddieReadersglasses Sat 07-Feb-15 18:57:09

blackswan the main symptom was the hydrocephalus which has now been sorted. They are monitoring his vision very closely and if any indication of worsening then it will be radiotherapy. It might never get worse which is why they will not do it at the moment. Did your son have proton beam abroad? On NHS? It's certainly something I'd look into if he did need radiotherapy as the long term effects on an 8 year olds brain could be quite scary I think. Did your son have a benign tumour too?
Our sons case has been reviewed at a Scotland wide meeting so we've had the consensus of opinion from across Scotland.
Do you mind if I ask where was your son's tumour?

BlackSwan Sat 07-Feb-15 20:09:36

Our son had a pituitary tumour - he had proton at 3 years and so far, it has managed to reduce the tumour size to next to nothing. The long term effects are a worry of course. I think it's hard to compare cases, the side effects of proton can be very different depending where in the brain they are targeting. We were very fortunate in that our son qualified for NHS funded proton in the US. It would have been tough otherwise. I have no doubt that in the circumstances it was the best option for him.
I hope you're all managing well enough in the circumstances & I really hope there's no more treatment required down the road for your son.

EddieReadersglasses Sat 07-Feb-15 22:11:59

Thanks blackswan yes hopefully he won't need anything more.
Proton definitely preferable from longer term point of view, it's just a shame it's not more widely available for all kids who need radiotherapy esp to their heads.
I hope your son is doing well now.
Ds's tumour is quite close to pituitary I believe so that's another thing we have to watch for in terms of local effects of tumour growth

EddieReadersglasses Sat 07-Feb-15 22:13:55

And in terms of how we are doing, today was our first 'normal' day for weeks. We all went out had a forest walk then some lunch and it felt great. We are trying to focus on the fact that they are all currently well instead of worrying about the future but it's easy to forget that at times

BlackSwan Sun 08-Feb-15 06:31:16

It's great that you're doing things he loves. It takes a long time to get used to this kind of thing, but you will adjust.
Regarding proton - absolutely, if they say he needs radio - it's frankly the only way to go. Come 2018 or whenever the centres here will be ready, the kids will be much better off. The fact that his tumour is benign shouldn't make any difference. Our son's tumour couldn't metastasise to another part of his body, but it could regrow and infiltrate other parts of the brain - and kill him, so thankfully he was sent. The fact he had a good chance of being cured by the proton was a big part of their decision making I think. It's the kids who sadly are unlikely to be cured by proton who struggle the most for funding. It's a very sad situation.

EddieReadersglasses Mon 09-Feb-15 13:23:34

Thanks blackswan another evening researching last night and I can see ds1s tumour is on list of conditions suitable for proton beam on nhs so if we do need it there is hopefully good chance of getting it.
I'm going to get my passport updated as its about to expire just in case.
I like to be prepared but fx we will not be going down that road.
I hope your son stays well too.

HippoPottyMouth Thu 26-Nov-15 22:21:49

I have found this thread as I am frantically googling my DDs options. She is only 6 months old and showing signs of puberty and also uneven pupil sizes. I am absolutely terrified at the idea that she might have a pituitary tumour and currently can't imagine another outcome.
Blackswan how is your son doing?
Also if anyone else sees this who has had similar with their baby please let me know

Footle Thu 26-Nov-15 22:46:44

Hippo, I have nothing helpful to say except I'm very sorry for what you're going through - and I'm wondering if you might get more replies if you start a new thread in Children's Health.

HippoPottyMouth Thu 26-Nov-15 22:51:23

Thank you. I've started one in chat as I don't think these threads get spotted very often generally do they

fastdaytears Thu 26-Nov-15 23:03:52

I don't have anything medical to add, but I had a benign brain tumour at 10 and was properly discharged from follow up at about 25 and now I'm a reasonably normal 31 year old.

I was lucky that it was in a good place to operate so not all that traumatic for me. Much, much harder for my parents and siblings which I think not everyone appreciates. My younger sister in particular felt totally abandoned and had no idea what was going on.

I had a squint and a lot of vomiting but no seizures.

flowers to you and lots of cake for your son if he has an appetite at the moment.

fastdaytears Thu 26-Nov-15 23:05:06

Oops sorry for the zombie response. Too much wine.

Lots of flowers for hippo too

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