Benign Brain Tumour

[ilovesun]

Hello all I am new to mums net and wondered if anyone had any experience with benign brain tumours? My daughter was diagnosed with one last Nov and had 2 emergency operations to reduce hydrocephalus and also to remove what they could of the tumour. She is doing well but past couple of weeks I have been worried about her so her next scan is July and I feel sick about it already. Everyone tells me i am lucky and shes doing great but I am really not coping. As I said she is doing as well as could be hoped but that fear and shock for me wont go away. Any advice or stories of people on this same journey a few years ahead? The hosptial had no families we could get in touch with similar diagnosis and the lack of research and info online all is focused on cancerous tumours which is totally understandable but since we left hospital I just feel like everyone else around me sees Ella and says shes fine what are you worried about..which doesnt help

[hackneyzoo]

Hi Ilovesun, sorry you are going through a tough time, it's a really hard situation to deal with, especially the constant worry at the back of your mind. My DS, who is 7 now, was diagnosed with a tumour surrounding the nerves on his neck when he was a baby and he's recently had major surgery due to a secondary tumour around his aorta and penetrating other nerve tissue. Luckily it was benign, but they didn't get it all and there is a good chance of regrowth so drug intervention may be needed.
It is tough because childhood tumours are so rare that there is very little research online and no information about children with DS's tumour type. Over time we have got used to regular MRI's, biopsies and various other clinics that DS attends from time to time, but it feels like we are constantly having to keep a lid on the worry. I pretty much take each appointment as it comes, allow myself to wobble and fear the worst, then put it to the back of my mind and get on with it. DH and I both feel very stressed before an MRI and an oncology app to discuss results though.
A few months ago I was telling a good friend that DS had to have an op to remove the new tumour and they were very much, 'That's good, at least then you can get on and you won't have to bother with all these hospital appointments etc.' It was a well-meaning comment, but far from the truth as DS will have a childhood filled with appointments, scans etc. I am grateful that it is benign and he is well in himself, but there is a constant worry for him and his future and there has never been any support offered in terms of counselling or a network of other parents. For me it would be helpful to talk to people who understand as it has had a big impact on our family.
So ilovesun, you're not alone, its a tough situation and feel free to message me if you want to chat. I hope your little girl's scan goes well and the results can put your mind at rest x

[ilovesun]

thank you for reply. I know what you mean about the worry but trying to not worry...and regrowth is my biggest worry just now as they dont have the research to know themselves. When they spoke about DD life in many years of good health thats what we couldnt get over and then they would speak in 10 years plus as hormones and teenage years can kick off regrowth. Do you have more than one child? If so how do you cope with that? We were planning another before this but I am scared dd takes ill health again and I am not sure how I would deal with leaving one at home to be in hospital or leaving dd1 in hospital and spending time at home...sorry for the delay in replying I have been away for a couple of days

[hackneyzoo]

I think it's really hard when there is no set course of action as the Drs don't know themselves and can't give you answers, or examples or protocols. It's hard watching and waiting and not knowing what's around the corner but I think we have kind of adjusted to it over time, because we've had too and it would be too stressful otherwise. Could your GP refer you for counselling so you could talk it through with someone? I've often thought about asking for this but somehow never managed to get that far!

How's your DD doing now?

I have 3 children. DD1 was 2 when DS was in and out of hospital as a baby. We decided to have a 3rd DC and there is a 2 year gap between DD2 and DS. Our philosophy was to get on with life and and we'd planned to have 3 DC. We don't have much family support, but friends have been great when we need help with childcare for hospital stays. The DDs are really supportive of thier brother and they are a good little gang. There has always been one of us at hospital and one of us at home with the other kids, which was hard when DD2 was a baby as I BF and couldn't leave her overnight, but we have been lucky with reasonably supportive workplaces. I think it's hard to plan for every possibility, I think we are built to cope with what's thrown at us and adapt.

[BlackSwan]

Our son had a histologically 'benign' tumour for which he had surgery and then proton beam therapy (radiation). 'Benign' is a misleading label for tumours which can recur in the brain. You're never off the hook.

For us, recurrences could cause blindness, untreatable insatiable hunger and obesity, additional hormone deficiencies (on top of what we deal with, which includes daily life saving medication multiple times a day). But once people hear 'benign' I think they believe we are 'lucky' - as though this is some kind of friendly tumour which is treated and dealt with. No such luck.

As it is you're less than a year out from diagnosis, so this is all quite fresh. It is almost 3 years since our son's diagnosis. I still think about it every day. His scans are now every 6 months. But we have had loads of appointments besides and hospital stays besides. I am ok when it's MRI time - but get pretty stressed before the results come back. If he says (at any point, even right after a good scan) that he has a headache, I feel paralysed by fear.

Life gets back to normal and slowly you adjust. I try not to take 'normality' for granted. When we are doing average things I remind myself how lucky we are. I remind myself there are kids in hospital enduring the unimaginable. I hope we are never there again.

Try to take things as they come. People who haven't been through this kind of thing can't really grasp what it's like. They see an apparently healthy kid, and they remember you saying it wasn't 'cancer' and they think you should keep it in perspective or something! Hate to say it, but I really feel that people have a limited capacity for empathy. And they find it a lot more easy to accept the awful things which have happened to you, because frankly it's not them.

Don't lose heart. I hope everything goes well for your daughter's upcoming scan. If you want to PM me please feel free.

[ilovesun]

hi hackneyzoo she is doing well thanks and we have decided if her next scan has no change we will try for another. Cannot predict what would happen but I do want her to have a sibling. My work have been very supportive with time off I have taken and do for appointments and we also have family support if we ever needed it. I have been to one counselling session but she has since left the hospital so waiting for the replacement one to start. At least its a place to be honest and even repeat yourself without someone basically saying it will all be fine...

Blackswan I know its scary as benign in the terms of the brain just means the least aggressive and I know there is also a small % that change to more aggressive masses so that is a worry too. I met one family when we were in hopsital for DD op that had cut their friends and family out of their life as they were in such a bad place and sick of everyone telling them it would be ok etc. Which is a shame as they then had no support but their DD was critically ill and think they just wanted to get on with it themselves. Yes there is a level you can see other souls in the hospital going through worse and feel you are more fortunate but then I go to my brothers or sister in laws and spend time with their healthy children and realise we are going to have this worry for all DD childhood now.
Its so nice to hear other people at least feel similar and how you can get on with normality! Where did you get proton beam? Was that to shrink tumour? I also now see that different parts of the UK have different technologies and that people can travel abroad for treatment now which is something you never think of until you are in the world of the hospital and wards.
How do you PM??

[BlackSwan]

Hi ilovesun, if you scroll to the top of the screen, and click on My Mumsnet, you will see your inbox. Have sent you a message.

Yes the proton was to shrink the tumour and thankfully it has done its job. No guarantee it won't return though, so keeping a watchful eye on the MRIs. The NHS funded our son's treatment in the USA. Will be forever grateful.

[feelingmiffed]

Hi Ilove,

My son has an optic nerve glioma ( a low grade "benign" tumour) he was diagnosed in September 2014 and almost a year to the day he started chemo. He's currently on week 37 out of 81 so nearly half way there!

We're currently in hospital as DS had chemo yesterday.

Feel free to PM me

[CharlieSierra]

Hi ilove my DD was diagnosed with a low grade cerebellar astrocytoma aged 4. She had surgery but they didn't manage to remove it all and it started to grow again. She had her second surgery aged 10. It's difficult, we had lots of opinions to weigh up and in the end we didn't opt for any further treatment, some specialists would have recommended radiotherapy. It takes time to come to terms with what has happened, what your child has gone through. I feel for anyone going through it. DD is 28 now and getting married in a couple of weeks.