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Original poster

Just diagnosed with brain tumour

106 replies

Catunderling · 07/12/2023 18:49

Hello!

I've been on here ages but have NC.

I've been unwell with what I thought were vestibular migraines for months but had an MRI as I have epilepsy too and lo, there's a tumour!

My specialist couldn't confirm the type without a further scan with contrast dye but thought it may be a slow growing variety. I have everything crossed for something like this if I must have it at all but it's a bit worrying!

Just trying to get my head around it if anyone's out there.

I have just had a call from the pharmacist saying my steroids were ready when my Dr hadn't said to expect any (I have a clinical background so know why I've been prescribed them. It just threw me for a bit of a loop that I wasn't expecting them then the pharmacist mentioned oncology. Not sure why!)

It's all so worrying as I'm mid to late 30s and want children and what if i can't now.

OP posts:
Gymmum82 · 10/12/2023 13:33

Sammyjbee · 10/12/2023 10:22

@catunderling
Im new on here..not too sure how it works. Sorry to hear of your diagnosis. My partner also got a phone call thurs 7th dec saying he too has one. Seems to he frontal lobe. This is following a seizure in sept. Our local hosp said the scans were fine. But refered us to Walton to be sure. So we were obviously expecting it to all be fine. We too now are just waiting. Im so sorry your going through this scary time too x

The Walton centre are amazing. You’re in good hands

Original poster
Catunderling · 10/12/2023 15:19

May I just say what a help this thread is, I'm so happy I started it and feel so listened to. 1000 thanks for all of the stories and i am so glad to hear of those doing well and send all my good wishes to those awaiting news.

Crappy headaches today which I've been having for months, worse before my period. Strange how its scarier now knowing about this!! So glad I cut down the steroids tomo!

OP posts:
Original poster
Catunderling · 13/12/2023 08:20

Slightly longer wait than expected until next scan which is a bit stressful as I had "1-2 weeks" in mind but no matter. Hopefully I'll know what I'm dealing with early in the new year.

OP posts:
giraffesaregreat · 13/12/2023 08:25

My grandma had a large meningioma in her forties, had it removed and lived until she was 95! My mum had two meningiomas removed in her fifties and is doing well 20 years later.

It does depend on the type of tumour but hopefully this will give you some reassurance that many people live long and happy lives after a brain tumour diagnosis.

I hope all goes really well for you x

Sammyjbee · 13/12/2023 10:11

Catunderling · 13/12/2023 08:20

Slightly longer wait than expected until next scan which is a bit stressful as I had "1-2 weeks" in mind but no matter. Hopefully I'll know what I'm dealing with early in the new year.

Hi. When did you hear back off them, we had the phone call on the 7th same as you and heard nothing back yet.. what date is your next scan? The waiting is awful isnt it 😞 sending love xx

Original poster
Catunderling · 13/12/2023 20:46

Sammyjbee · 13/12/2023 10:11

Hi. When did you hear back off them, we had the phone call on the 7th same as you and heard nothing back yet.. what date is your next scan? The waiting is awful isnt it 😞 sending love xx

Show quote history

Hey, how are you both feeling? Totally with you re the waiting. Mine is the 31st Jan. I think my neurologist may have pushed as she is going on leave and I think wanted me lined up with an appointment before she went as there's a lot of staff leave with covid. Sending love too and fingers crossed for a quick appointment for you guys xxx

OP posts:
Original poster
Catunderling · 13/12/2023 20:49

giraffesaregreat · 13/12/2023 08:25

My grandma had a large meningioma in her forties, had it removed and lived until she was 95! My mum had two meningiomas removed in her fifties and is doing well 20 years later.

It does depend on the type of tumour but hopefully this will give you some reassurance that many people live long and happy lives after a brain tumour diagnosis.

I hope all goes really well for you x

Thank you for this, it has genuinely given me some cheer thinking of your grandma's amazing long life following her diagnosis and treatment plus your mum doing well too.

OP posts:
Papergirl1968 · 13/12/2023 22:17

Thanks, Giraffe, that's reassuring about your grandmother.
Some days I feel like I not only lost my brain tumour but my mind. I had counselling in the summer and the counsellor told me I was grieving. It's taken me till now to really understand what she meant which was that I'm grieving for the person I used to be.
I'm so emotional some days, so tired sometimes I can barely put one foot in front of the other.
I should be feeling on top of the world, I've recovered well, hopefully soon I'll be driving again, so why am I sitting here with tears rolling down my face? Why did I hold it together before the surgery only to uncharacteristically fall apart afterwards? Will my memory and concentration ever recover? Why can I remember some things very clearly from before the surgery and not others? So many questions.
The neurosurgeon told me recovery is not the smooth upwards trajectory of a plane taking off but a series of peaks and troughs like a heartbeat and he was so right.

QueenoftheNimbleFlyingCat · 13/12/2023 22:24

OP I was diagnosed with a brain tumour in my 20s I'm now in my 40s and have a wonderful chaotic life with 2 young children. It was very scary at the time and I'm not sure I'd be so cavalier now, the beauty of youth and thinking you're invincible.

I had the tumour removed and was left with epilepsy which is thankfully under control. I did struggle with memory for a while and being able to think of words. I also had paralysis on the side the tumour was on but thankfully these symptoms were temporary.

I'll have everything crossed for your next scan! Sending very unmumsnetty hugs.

QueenoftheNimbleFlyingCat · 13/12/2023 22:27

Papergirl1968 · 13/12/2023 22:17

Thanks, Giraffe, that's reassuring about your grandmother.
Some days I feel like I not only lost my brain tumour but my mind. I had counselling in the summer and the counsellor told me I was grieving. It's taken me till now to really understand what she meant which was that I'm grieving for the person I used to be.
I'm so emotional some days, so tired sometimes I can barely put one foot in front of the other.
I should be feeling on top of the world, I've recovered well, hopefully soon I'll be driving again, so why am I sitting here with tears rolling down my face? Why did I hold it together before the surgery only to uncharacteristically fall apart afterwards? Will my memory and concentration ever recover? Why can I remember some things very clearly from before the surgery and not others? So many questions.
The neurosurgeon told me recovery is not the smooth upwards trajectory of a plane taking off but a series of peaks and troughs like a heartbeat and he was so right.

It took months for me to start feeling better and more myself. The brain can take a while to heal so please be kind to yourself.

coldcallerbaiter · 13/12/2023 22:28

I just want to say that my family member had one in her 30s, it was removed, benign and she is fine 20 years on…all the best x

Original poster
Catunderling · 15/12/2023 21:51

Thanks to each one for further kind comments. It really helped today. I got my consultant's letter and laying it out made it so scary especially as she made very clear she couldn't be certain of the diagnosis yet. I mean, I knew this and she never said differently but I'm be hoping for the benign one mentioned upthread and I'd let myself get used to that idea. I've been offered a cancellation and earlier scan which I'm very thankful for.

OP posts:
Waitingfordoggo · 16/12/2023 13:27

I’m really glad you will have your scan sooner @Catunderling, but sorry to hear that the letter has spiked your anxiety again. Anxiety which is-of course- completely natural and understandable. I hope you’re able to find some ways to distract yourself for the time being. 💐

Original poster
Catunderling · 26/12/2023 17:50

Happy Christmas all! Hope there has been some movement for those waiting for news and good times otherwise. Had my second scan and am roughly expecting to hear something tomorrow. Anxious doesn't cover it!

OP posts:
Unexpectedlysinglemum · 26/12/2023 17:54

My friend has had a tumor removed it all went well and she's received the all clear to try for a second baby x

Original poster
Catunderling · 26/12/2023 18:00

Unexpectedlysinglemum · 26/12/2023 17:54

My friend has had a tumor removed it all went well and she's received the all clear to try for a second baby x

That's wonderful!!

OP posts:
Gymmum82 · 26/12/2023 18:04

Fingers crossed for the best possible outcome @Catunderling will be thinking of you

caringcarer · 26/12/2023 18:22

OP my DH got migraines and then collapsed one day at the railway station. He went to the hospital in an ambulance and didn't know who he was. They checked his phone and wallet and rang me. I went to the hospital and DH didn't know who I was. We had been married for 16 years. They gave him a brain scan and said he had a brain tumour. Later in the day his memory returned. He came home with a referral back to Queen Elizabeth hospital to see a brain surgeon. He eventually had a slow growing tumour removed and released from hospital 2 days before Covid announced and he was released 5 days early as they needed the bed and said he'd be safer at home. His tumour was making him go blind as tangled all around the optic nerves and pressing on the pituitary. It took almost 7 hours of operation. I was told to expect 4 hours but it was more invasive than they realised. They operated up through his nose. He's had 3 clear MRI scans so tumour is not growing back. Without the operation he would be blind by now, and have horrendous migraines.

SauvignonBlanche · 26/12/2023 19:08

Hello @Catunderling, I’m sorry I didn’t see this thread sooner.

Like you, my brain tumour was found incidentally whilst looking for something else, I was 21 at the time! (Over 30 years ago)

I was initially told it was inoperable, which was scary 😦

A biopsy and several scans later it was decided to leave well alone. I had to take anticonvulsants as developed episodes but went on to have 2 DC.

About 10 years ago I was re-referred for a scan, due to the same unrelated issue and this time a neurosurgeon said he wanted to operate and remove it.

I had a craniotomy,I posted loads about it under this username at the time. I’ve been fine since, it’s just a memory.

My advice would be don’t read too much about brain tumours until it’s established what you’re looking at.

Please keep us posted and let us know how you get on.

Sammyjbee · 27/12/2023 08:28

Catunderling · 26/12/2023 17:50

Happy Christmas all! Hope there has been some movement for those waiting for news and good times otherwise. Had my second scan and am roughly expecting to hear something tomorrow. Anxious doesn't cover it!

Merry christmas. So glad youve had your second scan. Did you get to speak to a consultant too to ask any questions? My partner has his tomorrow. I thought it would be a longer wait for results. It took 3 weeks for the results of the first scan.
I do hope your ok and you managed to have as nice a xmas as possible. So hard with this hanging over you though..
Xx

Original poster
Catunderling · 27/12/2023 15:25

Thank you all so much for your wishes and experiences. Goodness that must've been hard for both your husband Caringcarer and having to wait for treatment, sauvignon. So glad it's been operated on now and going well.

Thanks @Gymmum82 hope you're having a lovely Christmas

Sammy I'm so pleased it's moving on and he's getting some answers shortly. I've not spoken to my Dr yet, just waiting really. Had a call from Evri and thought it was her calling! I nearly jumped out of my skin! Fingers crossed it's a good, uncomplicated result and plan of action for him.

OP posts:
Original poster
Catunderling · 27/12/2023 17:18

Ooh @Sammyjbee you and DP might find a blog called eyeamconnor interesting. It's a chap who had a glioma removed last year and is doing well as far as I know. Obv may or may not be the same type as us but he talks about the process and what to expect quite a bit.

OP posts:
Slitheringheights · 27/12/2023 17:27

Hope you’re ok. I have had major surgery for colon cancer. All removed. Had a chest scan 9 weeks ago, well there was something picked up with thyroid.
no word for 9 weeks till a few days before Christmas, a phone call for an appointment at the respiratory clinic at the local hospital.
turns out I have a heart mass? Wtf. They don’t know what it is, all I know they said it was nothing new. Plus nothing to do with the colon cancer.
I know heart cancer is very very rare. But it’s a thought of an operation.
they don’t seem to be in any rush, god knows if that’s a good thing or not.
fingers crossed it’s all good for you. Sending love ❤️ xx

LittleMissSleepyUK · 27/12/2023 21:09

Hope you’re doing ok OP

LittleBrownBaby · 27/12/2023 21:31

Hope you're doing ok OP