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Life-limiting illness

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Original poster

Brain tumour diagnosis

23 replies

Appervine · 22/03/2015 20:08

My dad has been diagnosed with what doctors think is a malignant brain tumour. He's had various scans and we're now waiting for an appointment to discuss results, treatment etc. it's a total shock - he started having word finding difficulties a couple of weeks before and my mum thought that he had either had a stroke or had dementia. We didn't expect this. He's on steroids at the moment and his speech has improved massively but the pack says they shouldn't be taken for more than three weeks so I don't know what will happen after that. I just wondered if anyone else was going through similar. I'm so worried about my mum as well. She's completely frazzled already.

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Sapphire387 · 04/04/2015 23:17

Hello Appervine,

Only just seen this. My DH is being treated for glioblastoma, the most aggressive of the malignant brain tumours. It was discovered last July.

Any news now on what they are doing for your dad? Are they planning to operate on it?

Lots of love to you and your mum. DH's diagnosis was a real shock too.

wishingchair · 04/04/2015 23:28

Hi - it's good the steroids have improved things - I'd see that as a positive sign - and sorry you are going through this. Several yrs ago my DH was diagnosed with a high grade brain tumour, treated with radiotherapy and chemo, went away then reappeared 5 yrs ago. Now they're not really sure what it is - two biopsies in this time have been inconclusive. We know it's not good and we have a terminal prognosis, but what I'm trying (badly) to say is even though it might not be a tumour now, we've been through treatment for it so may be able to answer any questions x

AttilaTheMeerkat · 15/04/2015 16:11

Appervine,

I sincerely hope that you as a family are not given such news when you see the doctors.

I am so very sorry to read of your situation, it also took the doctors some time also to diagnose a malignant brain tumour. An initial hospital visit he made (he was becoming confused and had some time earlier crashed his car) did not spot it simply because a MRI scan was not done (not that they felt there was any cause for this to be done initially).

There are many types of brain tumour and FIL's was malignant and aggressive (a grade 3/4). They had also stated that it had been growing for a long time.

It may come to pass that your Dad will no longer be able to manage at home. Your mother needs support in place and I would see if it is possible to get your Dad into a care/respite home particularly if he is terminal. This will not be an easy process however but in our case the hospital found him a residential place, many homes would not take FIL initially due to the amount of care needed.

They gave him steroids as well which he was taken off after a period of weeks. This stopped the swelling on his brain but such measures are only temporary. His tumour was deemed inoperable due to sheer size and he died a couple of months after initial diagnosis.

My counsel to you would be to be kind to yourself and to support each other as much as possible. Seek outside support too for your own self from one of the cancer charities or find a brain tumour support group.

Original poster

Appervine · 16/04/2015 22:53

I've just come back to this and seen your messages. Thanks so much for your replies and for sharing your stories. So, things have moved on and my dad is due to have part of his tumour removed next week. Everything's been delayed because of the Easter break. Once they've done the op they'll have a clearer idea of what they're dealing with. Most likely he will be given a short course radiotherapy after that. The fact that they're prepared to operate on him is good, I suppose (he's 80 but was previously in very good health) but we've still go no sense of of the longer term.
Sorry, I'm on my phone at the moment so can't scroll back to check names. I'm just sorry that other people have been going through the same thing.
My mum is trying to hold it all together but I know she's going to need to offload to someone outside the family at some point. They haven't been allocated a Macmillan nurse or anyone like that. Does anyone know what the process for that is, or found another way to talk it through?

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Original poster

Appervine · 16/04/2015 23:04

Sapphire and wishingchair - I'm so sorry to hear about both your dhs. Did they operate on your husband, sapphire?

Atila - so sorry to hear about your fil too. Losing him so quickly must have been a horrible shock. We will have to look into all those things I suppose. I don't know how far off it is.

What feels so odd about my dad is that he looks so normal still but is actually very ill. It's difficult to get my head around.

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Musicaltheatremum · 19/04/2015 17:54

It is very good that they feel they can operate. It's a hellish illness. I lost my husband to it in 2012. His was a low grade that became high grade over time. Hope all goes well this week.

Original poster

Appervine · 20/04/2015 18:15

Sorry for your loss musicaltheatremum. Dad had his op today. We haven't had any updates from the consultant but apparently they suspect it to be a glioblastoma. I assume this won't be confirmed until the biopsy results are through. Not sure how long that will be.

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oohnewshoes · 20/04/2015 18:26

Appervine. Thinking of you today. My dad is going through the same. It's such a shock

Dad was operated on just before Christmas then had 6 weeks of radium.

He's doing really well. Finished radium a month ago and is dying to get back to work and driving. He is due a mri in around 2 weeks to see how the last bit of the tumor reacted. We're all very hopeful about It but time will tell.

Hope you're ok

Original poster

Appervine · 20/04/2015 21:03

Sorry to hear you're going through this too newshoes, but it all sounds very hopeful for your dad. I really hope you get some good news when he has his next appointment and that he can get back to normal life again. It's such a tense time waiting for news isn't it. Can I ask what kind of tumour he had?

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oohnewshoes · 20/04/2015 22:01

I honestly can't remember the name. I will ask mum tomorrow but it is/was a grade 3. on his left temple lode. His was extremely close to his brain stem. Surgeons went as close as it was safe too. Hopefully radium will look after the rest. He has been told there is always a chance it will come back and will be assessed regularly.

How is you dad. Is he awake? It's always scary seeing them for the first time after surgery. You just don't know what to expect. Hopefully you will get to talk to the surgeon soon.

Original poster

Appervine · 22/04/2015 14:38

It is scary isn't it. Although he's actually doing ok. He was able to sit in a chair on the evening of the op and did a short walk with the physio yesterday. No news on the tumour itself though. He's got an MRI today and then will go and see the consultant next week for results.

I really hope your dad gets good news at his next appointment. It sounds like he's just desperate to get back to normal. Did he have any side effects from radiotherapy?

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oohnewshoes · 22/04/2015 21:31

He lost some hair around the points where they aim the radium And very red almost burn like marks. He also had a lot of headaches for the first few months.

The biggest thing was that his personality changed after surgery. he was always a very quite man. When you phoned home he would ask if I was ok and put mum on. Now he talks and talks. It's weird but in a good way

He is desperate to get back driving and back to work. I'm really fearful for him if he doesn't get good new at his next mri.

I remember so well where you are now.the feeling of being so lost and powerless. I just felt numb. It does get better In a way.

I hope you get good news when your dad meets the surgeon

Original poster

Appervine · 22/04/2015 22:27

It's funny you should mention personality changes, newshoes, because I was chatting to my sister about this earlier on. My dad has become very difficult over recent weeks, and quite unpleasant to my mum. How much of it is the shock of the diagnosis and accompanying anxiety and how much is the tumour (which was apparently large and pushing his brain to one side) I don't know. But I was wondering whether, now that some has been removed, he'll go back to how he was before or even change again. It sounds like a positive change for your dad. It must feel nice to be able to chat to him more.

Anyway, it turns out that he's been pacing the corridors today and they're talking about him going him in the next couple of days!

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oohnewshoes · 23/04/2015 09:56

Amazing how quickly dad went home. I think 2 or 3 days later.

I think dad gave mum a hard time to. Mum would fuss over him " did you take your meds. do you need a nap" dad couldn't deal with it. He wanted to forget but it was mums way of doing something. It was so hard for her too.

Its sometimes a long wait between appointments. And you sort of forget he's so sick. He looks and act so healthy now. Then the appointment and the worry of new news starts all over again??

Original poster

Appervine · 26/04/2015 20:10

That's it newshoes, my dad keeps accusing my mum of fussing but at the same time wants her to look after him! I just spoke to him and he sounded really perky actually. I think the fact of some of the tumour being gone and his steroids being reduced seems to have had an effect.

When is your dad's appointment? Fingers and toes crossed that it's good news.

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Original poster

Appervine · 30/04/2015 16:31

Well dad had his appointment today. Aggressive stage 4 tumour. We're all gutted. He was so upbeat when I spoke to him last night.

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whatisforteamum · 30/04/2015 21:08

Appervine i am so sorry for you and your family,Both my parents have rare stage 4 cancer.Look after yourself as you take this news in .

Original poster

Appervine · 30/04/2015 21:50

Gosh whatisfortea, that is really tough. Sorry you're also going through this. Have you got other family support?

I just feel so sorry for my dad. I think he felt that this treatment would be the end if it all and he'd be back to normal again. Hearing that it'll return in a few months was very hard.

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oohnewshoes · 30/04/2015 22:16

Oh Appervine, I'm so sorry. That's heart breaking news. please look after yourself. I know it's hard when your trying to care for everyone else.

whatisforteamum · 30/04/2015 22:20

I also think the fact it is a brain tumour sounds harder if that makes sense.Dads aggressive cancer is a type that can spread to the brain,Luckily he responded to chemo 1st time around but this time is has spread everywhere.We were so focused on Mums cancer and its return we didnt know he was ill.Everything crossed that your Df it is such a shock when unexpected news comes our way.Yes i come from a large family who all cope differently.Dads taken it harshly that chemo hasnt worked bless him.

oohnewshoes · 01/05/2015 09:16

Thinking of you today appervine xx

Original poster

Appervine · 03/05/2015 19:25

Thanks for the replies. I think it's sinking in now. Such a shame so many of us are going through similar.

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juliascurr · 03/05/2015 19:32

so sorry to hear this
Macmillan are great, apparently
www.macmillan.org.uk/information-and-support/index.html

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