Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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:
HumourReplacementTherapy · 07/12/2023 19:31

Gosh that must have been a terrible shock. I've no experience I'm afraid but wanted to reply so your post gets bumped. Flowers
It's a bit poor that you've not been informed re the steroids as I'm sure you'll know, you need to know about side effects etc when you commence them.
I hope you get a further appointment soon so you can find out exactly what it is you're dealing with

Bobbybobbins · 07/12/2023 19:49

Oh gosh OP, what a shock for you. I'm afraid I don't have any knowledge but hopefully someone will be along who does.

RougeFraise · 07/12/2023 20:33

I’m sorry OP, bless your heart. I hope it’s benign and will be sorted for you very quickly.

coodawoodashooda · 07/12/2023 20:36

That must be very frightening. I hope you get in touch with the doctor soon.

Runforhome · 07/12/2023 20:46

Have a look at https://www.thebraintumourcharity.org/
lots of useful information and also someone on the other end of the phone to talk to . I know it’s worrying and a lot to take in but it’s amazing what can be done. My thoughts are with you .

Home

The Brain Tumour Charity is the world’s leading brain tumour charity, moving further, faster to help everyone affected by a brain tumour or brain cancer

https://www.thebraintumourcharity.org/

Original poster
Catunderling · 07/12/2023 21:04

Thank you so much for the supportive messages. My dear friends have been wonderful too. Just working through telling them whilst having a look at the brain tumour charity website which makes me feel a lot less alone with it (not that I want anyone else to have the same)

OP posts:
Mammajay · 07/12/2023 21:18

My bil got a diagnosis of brain tumour but it is slow growing and they think it could have been in his brain for years. It was a scary time but the hospital reassured him and he is regularly monitoring. No further issues so far in ,3 years.

Gymmum82 · 07/12/2023 21:23

My best friend has one. Hers is slow growing. She has had debulking surgery and is now on watch and wait. It will
grow back.
Im so sorry you are on this journey. I’ve been there every step of the way with her and I’m happy to answer any questions. It’s such a scary diagnosis but she is back at work and for the most part doing very well. Also very young like you. Sending you lots of love

MummyPigRules · 07/12/2023 21:26

I had a brain tumour in my late twenties. Steroids, brain surgery, encephalitis, shunt inserted. I got pregnant within a year of my operation and, nearly 20 years later, have three children, the shunt is still there and I have regular MRI scans to check all is still ok. It is scary OP, but there are positive outcomes out there. Stay strong and wishing you all the best 👊

App13 · 07/12/2023 21:28

My classmate had brain tumour in her early 20s and now 20 years later she's still alive and living well.

There is hope and so don't lose it 🙏

janfebmarchapril · 07/12/2023 21:30

I'm so sorry. Sending you love and strength from afar xx

tumbleouttabedandstubletothekitchen · 07/12/2023 22:00

This reply has been withdrawn

This has been withdrawn at the request of the user.

Original poster
Catunderling · 07/12/2023 22:03

Thank you all so much, wonderful to hear your recovery stories. I really appreciate you taking the time to reply to me.

OP posts:
annonymousse · 07/12/2023 22:11

I had a brain tumour. Had debulking 12 years ago and have regular MRI's to check it's stable. It was slow growing and they think it had been there a few years before I became symptomatic. I had quite a long recovery post surgery due to the position it had grown in but after a year I was able to drive and returned to work (midwife).

It all feels like a weird dream now. I think I was in denial until after the surgery. When I was waiting to go into theatre I was thinking how embarrassed they were going to be when they realised they had been looking at someone else's scan all along. 🥴

Original poster
Catunderling · 07/12/2023 22:21

This reply has been deleted

This has been withdrawn at the request of the user.

Thanks for your kind words and yes of course although please don't jump to more serious conclusions and worry yourself. Benign vestibular symptoms are quife common so hopefully it's just that.

I had covid about a month before all of these symptoms started and it may be that the vestibular neuritis/ migraine that was started by the viral infection kicked off the symptoms and there was just a sneaky tumour there all the while.

So i had started with dizziness, exacerbated by visual stimuli such as reflective surfaces, reflective patterns busy supermarket aisles and bright lights. I have epilepsy affected by these factors but it became suddenly worse.

I then had a few bouts of fast spinning vertigo and a lot of anxiety.

Then I had a number of visual disturbances (flashing light auras) which were very similar to or the same as my epilepsy auras. This moved onto almost constant headaches, dizziness and nausea. I was finding screens hard to use.

I had the parosmia after covid too but in 2020. I haven't got my sense of small back fully but that definitely came on post virally. Could you have had an infection that started this?

OP posts:
Gymmum82 · 07/12/2023 22:32

annonymousse · 07/12/2023 22:11

I had a brain tumour. Had debulking 12 years ago and have regular MRI's to check it's stable. It was slow growing and they think it had been there a few years before I became symptomatic. I had quite a long recovery post surgery due to the position it had grown in but after a year I was able to drive and returned to work (midwife).

It all feels like a weird dream now. I think I was in denial until after the surgery. When I was waiting to go into theatre I was thinking how embarrassed they were going to be when they realised they had been looking at someone else's scan all along. 🥴

Could I ask what type of tumour you had?

annonymousse · 07/12/2023 22:40

@Gymmum82 it was a meningioma on the brain stem.

Nonamesleft1 · 07/12/2023 22:57

My friends mum has had a brain tumour for over 15 years.

no treatment, just monitoring. On first diagnosis she was terrified, and everyone she spoke to asked if she was having surgery/chemo/radio and the talk of “fighting” etc started.

even now if she tells a new friend they are initially horrified that the NHS is “refusing” to treat her and telling her to go private as they will do something, and the NHS just won’t spend money on older people with cancer. (Fwiw we do know someone who went private for treatment after the NHS said it didn’t need active treatment and was dead within 4 months from the chemo side effects).

truth is any sort of intervention risks causing the tumour to spread, mutate, or just damage her healthy brain. Her symptoms are manageable.

annonymousse · 07/12/2023 23:17

I was given 3 options when I was diagnosed

  1. Do nothing and just monitor
  2. Radiotherapy
  3. Surgery

Option one was a no go as I was already being affected so I had to do something

Option two the consultant told me my type of tumour didn't really respond to radiotherapy and it had the potential to make subsequent surgery more complicated

Option three was really my only choice.

I then had to wait a few weeks for them to schedule the op as I needed two consultants to do different parts of the op.

It was actually worse for my family than me. They were all convinced I was being brave when in fact I had my head deep in the sand.

Gymmum82 · 08/12/2023 05:56

Nonamesleft1 · 07/12/2023 22:57

My friends mum has had a brain tumour for over 15 years.

no treatment, just monitoring. On first diagnosis she was terrified, and everyone she spoke to asked if she was having surgery/chemo/radio and the talk of “fighting” etc started.

even now if she tells a new friend they are initially horrified that the NHS is “refusing” to treat her and telling her to go private as they will do something, and the NHS just won’t spend money on older people with cancer. (Fwiw we do know someone who went private for treatment after the NHS said it didn’t need active treatment and was dead within 4 months from the chemo side effects).

truth is any sort of intervention risks causing the tumour to spread, mutate, or just damage her healthy brain. Her symptoms are manageable.

This isn’t true. Please don’t spread misinformation. It entirely depends on the type of tumour how quickly they spread/mutate and whether or not they require treatment.
My best friend had treatment and thankfully is still here 2 years later. My work colleagues husband had no treatment. He was dead within 8 weeks because his tumour was so aggressive.

There are many different types of tumour. It’s more likely your friends mum has a menigioma, slow growing benign tumour and the person who died had glioblastoma multiforme which is extremely aggressive rather than that they died of the treatment

Original poster
Catunderling · 08/12/2023 17:07

Bit of a stressful day visiting parents after deciding not to tell them until knowing what I'm dealing with (my DM had a stroke earlier this year so I don't want to cause undue worry). Was so glad to get home to DP and the cat!!

Thanks again for all your messages. I'm reading each one xxx

OP posts:
Gymmum82 · 08/12/2023 17:53

Hope you’re doing ok. Do you have a date for your contrast MRI? Hopefully you’ll have a better idea what type of tumour you have then. The first few weeks/months are so so difficult and overwhelming. We are now over 2 years since diagnosis and nearly 2 years since surgery and while it never goes away it does get somewhat easier. The brain tumour charity has a Facebook group which can be helpful and make you feel less alone but my friend also found it quite hard at times to read

Toddlerteaplease · 08/12/2023 18:04

A friend of mine was diagnosed a couple of years ago, when his vision went blurry. And the optician sent him for a scan. He was initially told it was benign. (Can't remember what type) but after surgery, it was find to be malignant. He had surgery and six weeks of radiotherapy. And is doing really well. The remaining tumour has continued to shrink. And he's currently doing two roles at work.

Original poster
Catunderling · 08/12/2023 19:17

Gymmum82 · 08/12/2023 17:53

Hope you’re doing ok. Do you have a date for your contrast MRI? Hopefully you’ll have a better idea what type of tumour you have then. The first few weeks/months are so so difficult and overwhelming. We are now over 2 years since diagnosis and nearly 2 years since surgery and while it never goes away it does get somewhat easier. The brain tumour charity has a Facebook group which can be helpful and make you feel less alone but my friend also found it quite hard at times to read

Thanks @Gymmum82 glad to hear your journey is going well. Hopefully with time this will experience get easier still. The Brain Tumour charity is great. I hope to do one of their night walks if all goes well.

I was just told 1-2 weeks until my next scan and no update since. Hopefully they'll get a move on, I forgot to ask how big it was when the Dr called as it was such a surprise and stupidly that curiosity is really bugging me! It's hard as obviously I don't want bad news but the waiting allows you to think the worst so it's tougher to stay chipper all the time than I'd hoped.

I have, however, placed myself on a google ban. I've decided I can read up on the medication I have been given plus the possible diagnosis mentioned (on the understanding it may not be correct) using NHS and BNF type websites but no further, apart from the contrast MRI process for now.

The medical progress made is astounding even from reading these posts and I am so glad to hear about you and your loved ones doing well.

OP posts:
Kimmeridge · 08/12/2023 19:20

My best friend has a brain tumour. 25 years now & causing no problems. He takes anti seizure meds & is prone to headaches but thankfully no other issues.

Hopefully yours will be similar