Brain tumour

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Just found out DH had a rapidly growing brain tumour. Referred to oncology, neurosurgery and has already seen skull team. Skull people have recommended surgery now; though don’t know if it is malignant yet. Very interested in any other experiences of this. Two kids in primary school.

Have you been told the name / type of tumour ?

What has led to the assumption its rapidly growing?

He was told it was rapidly growing by the skull team. He has an MRI a few months ago and another a few weeks ago. Just got the results. They noted it had grown much more than expected which is why now surgery is recommended. But I don’t know why he has been referred to oncologist as they don’t yet know exactly what type it is..and I find that worrying.

I guess I was posting for feedback on positive experiences following surgery for brain tumour in adult male. But realise it depends on many things. Very sorry to anyone who has not had a good outcome. Maybe I’ll leave this thread for now and come back to it again when I’ve more info. Perhaps hearing others experiences would be better then. Thank you.

So sorry you are going through this

My partner was diagnosed with a right parietal meningioma tumour following a strange episode on holidays when he lost sensation down his left side. The consultant was able to say which kind of tumour it was from the MRI scan but they couldn't be certain until they operated. It was on top of his brain below his skull. They were able to remove almost all of it and he has made a great recovery. They did say it could have been there for a long time but was growing slowly.
It's a scary time - thinking of you both and hoping you get some more information soon and have a positive outcome.

It's a very scary time. My dad was much better after his surgery than before. There are so many variables though- the type of tumour and what it will do next, as well as where the tumour is.
You really can't get much useful information from other people, only the specialists have a reasonable idea. I know how hard the waiting is, trying to understand what's happening.

There’s a tv programme on C4 at the moment about brain surgery. Positive outcomes for a man in a similar situation to your DH.

Sending a hug.

My daughter had a benign brain tumour diagnosed by mri. She had gamma knife surgery but didn't feel the benefit for a year afterwards. Quite normal apparently. The pain has gone but she will always have the numbness.

Martin Kemp had two brain tumours (benign).

So sorry to hear this, it must be a scary time for you both. I haven't had a brain tumour, but had emergency brain surgery last year (twice) and have spent far more time than I'd like to have spent on Neuro wards with lots of people around me with tumours.

The outcome for him will depend on a gazillion things including size/location/accessibility/how 'wrapped around' other bits of the brain it is etc. The surgery may well require him to be awake during it (won't hurt though). The thing to be aware of is that it'll take time afterwards for him to come back to 'normal'; he'll be unbelievably exhausted for a while (weeks) and probably sleep a lot. He also won't be able to drive for at least 6 months.

On the bright side, neuroscience has come a long way just in the last decade and it's truly amazing what can be done now . Really hope it goes well!

A distant relative, mid 40s, suddenly last year got incredibly severe headaches...admitted... Within 2 weeks brain surgery to remove as much of a brain tumour as could. They were hopeful it was benign from scans. They also immediately saw oncology though.

Surgery caused a v minor stroke...got out most but not all... Unfortunately it was cancerous... .has had chemo etc since. 18 months or so later they are doing well... Recent scan found no growth... As good a result as can hope for in their position.

How's this effected them? .... V tired would be my main observation. Patches of hair have fallen out. Had a reaction (swelled face) after some treatment that required some time back in hospital. They will be unable to drive for a few years after this surgery.

Children are similar age and have coped surprisingly well after initial shock... People have been very kind and kept children distracts when can. School v helpful as well. So please reach out for help. Think there DH has struggled the most as trying tk keep it all together.

A horrible situation to be in, especially in covid times... A big hug... I hope you get answers and positive action soon

Thanks very much. I really appreciate these responses, hearing about people’s experiences during recovery and stories where things have worked out well.

I think the preference is always to whip it out if possible. If it's low grade then he may go on to watch and wait. If high grade, radio and chemotherapy are used to treat fragments left behind after debunking surgery.
I have an inoperable low grade oligodendroglioma in the motor strip, which will in due course progress up through the grades. I've had radiotherapy and chemotherapy consecutively to try and slow it down and am now on watch and wait. Post op high grade treatment tends to be a shorter course of concurrent radio and chemo.
It's hard work, especially the radiotherapy, but it's manageable and depending on where his tumour is, he may be almost normal but with lots of fatigue. At peak, you may only get a couple of sensible hours per day out of him, but it does improve.
Do get in touch with the Brain Tumour Charity, Maggie's and Macmillan to see if there's a support group in your area. There is also a group on Facebook for partners of people with brain tumours which would be a good place for you to get some support.
Hoping for a good result from surgery for you both.

Debulking

Also what everyone else said about position, type, size diffuse ness etc of tumour. So many variables each case is unique.

Setting up the radiotherapy programming is so precise and complex it takes a couple of weeks, so they may be sending him to oncology as a precaution to be prepared as if the tumour is a grade 4 they can move quickly to treatment.

I don’t know the type or much information really but my father in law collapsed 20 years ago, they thought he’d had a stroke but it turned out to be a brain tumour. He had surgery and took a few months to recover fully but has led a good and normal life since then and only started to decline more recently now he’s in his 80s but unrelated to the tumour.

Sorry, meant to say, I was 44 when diagnosed (now 47) and my kids were 9 &13 then. Please do pm if you want to talk more about it all.

Very sorry to hear about your situation Schmoody. Thank you for sharing your experiences. And for info about sources of support. Hope you are ok. I will PM you when i have a little more info - i really appreciate that offer. Thank you.