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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:
Bloodyel · 08/12/2023 19:48

Also came on to say I know someone who had a brain tumour diagnosed young and she had surgery and many years later is doing just fine, with no further issues. It does happen, but this must be such a worrying time, please take extra good care of yourself and minimise the time you spend worrying as best you can.

Gymmum82 · 08/12/2023 19:51

Catunderling · 08/12/2023 19:17

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.

Show quote history

What possible diagnosis did they give you?
I understand some people find out after biopsy their tumour is graded differently than their guess. But in our case the diagnosis based on the MRI was correct.

I would also recommend brainstrust charity. They have been an amazing support too so you may find them helpful.

Don’t be afraid to chase up your MRI. There has been a lot of chasing appointments and results since the beginning which continues now

stargir · 08/12/2023 20:16

I was diagnosed with a slow growing brain tumour, meningioma at the age of 18. I had surgery to remove it. That was 34 years ago and it has never returned. I have been left with a small area of brain damage which causes mild auras and I have to take anticonvulsants for the rest of my life.

Original poster
Catunderling · 08/12/2023 20:59

Thanks all, more reassuring stories. So good to hear.

She thought it might be a ganglioglioma which is a low grade one but said she wouldn't make any promises until seeing the contrast and discussing with oncology.

I like to think she'd have been more neutral if she was also considering something dodgier or really didn't get a good look at it but I suppose there's no point worrying about that until I hear back.

Yes good point, will definitely check if no MRI date in say, a week.

OP posts:
Gymmum82 · 08/12/2023 21:21

That’s good news. Hopefully she is correct. They are very rare so you’d hope she’d be pretty sure to pick a diagnosis like that.
Will keep everything crossed for your MRI

TreadSoftlyOnMyDreams · 09/12/2023 11:19

Wishing you the best for the weeks and months ahead, it's a hard diagnosis to get, so many unknowns and varying outcomes.

I have had experience of this with close family on both sides, twice unfortunately. What I would say (and I am the least "woo" diet conscious person ever) is that avoiding sugar and animal fats can have an impact on cancer. The thinking is that cancer cells feed off sugar. I recommend your google ban, you don't have anywhere near enough info yet but it might help you to feel more in control if you have info on diet and health to support the various meds and treatment plans.

Mollyplop999 · 09/12/2023 11:23

You sound a lovely lovely person. I really hope it turns out well for you xx

Parentblame · 09/12/2023 11:24

This reply has been deleted

This has been withdrawn at the request of the user.

What has it got to do with smelling smoke ?? I was just reading through and I’ve been having headaches and smelling smoke for months I thought I was going mad but is this actually migraine related ??

StillWantingADog · 09/12/2023 11:25

Wishing you all the best.

I know someone in her 30s who he one and it was removed and that was the end of it. Fingers crossed for similar for you.

Sarah2891 · 09/12/2023 11:31

Parentblame · 09/12/2023 11:24

What has it got to do with smelling smoke ?? I was just reading through and I’ve been having headaches and smelling smoke for months I thought I was going mad but is this actually migraine related ??

Show quote history

I think some people can smell things that aren't there with migraines. But it can also be a sign of a brain tumour so it's best to check with a doctor.

Wishing you all the best OP.

tumbleouttabedandstubletothekitchen · 09/12/2023 11:31

This reply has been withdrawn

This has been withdrawn at the request of the user.

Parentblame · 09/12/2023 11:33

Sarah2891 · 09/12/2023 11:31

I think some people can smell things that aren't there with migraines. But it can also be a sign of a brain tumour so it's best to check with a doctor.

Wishing you all the best OP.

Edited
Show quote history

I never knew this was a thing I’ll see the gp.

wishing you all the best OP

tumbleouttabedandstubletothekitchen · 09/12/2023 11:34

This reply has been withdrawn

This has been withdrawn at the request of the user.

LetMeGoogleThat · 09/12/2023 11:50

I had a benign brain tumour, which was successfully removed. There is a closed fb group by the Brain tumour charity and it's a great source of info and support 💐

Nonamesleft1 · 09/12/2023 14:39

Gymmum82 · 08/12/2023 05:56

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

Show quote history

Sorry, typing too quickly and didn’t proofread- not spreading misinformation, just didn’t make it clear that this was in her case- they decided against intervention as the risks were too high.

obviously this isn’t true in every case.

GertrudeSteinsbook · 09/12/2023 14:47

Good luck OP, I don’t have experience of brain tumours but I have cancer myself. Can I just say that in terms of diet there is a lot of misinformation around & it’s very overwhelming. It’s not as simple as sugar causes cancer- Macmillan have some excellent information on this. Also Penny Brohn are a great resource for diet. But it sounds as though there is no information to say your tumour is cancerous yet (hopefully it’s benign).

Original poster
Catunderling · 09/12/2023 19:17

Thanks for the diet info and resources, I think that's allowed under my ban! I'm a reasonably healthy ish eater but will probably be more careful after this whatever the outcome is. I cut down sugar and booze when my migraines became awful and it helped a bit so will probably stick with that at the least.

Feeling a bit uncomfortable after starting the steroids, muscle aches. It definitely only started after the steroids. NHS says to call 111 in case it's low potassium but I reduce this dose tomo anyway so i may just order some supplements and see.

OP posts:
Papergirl1968 · 09/12/2023 19:52

I'm sorry you're going through this, @Catunderling
I was diagnosed with a brain tumour two and a half years ago. It was a slow growing meningioma in my frontal lobe and thankfully benign.
I was having both absence seizures and full seizures, and was initially reluctant to have surgery until I had three in 15 hours, cutting my head when I fell in the kitchen - I would have absolutely no warning and it became second nature to stand well back on the pavement when crossing the road in case I fell in front of a vehicle.
The surgery itself at the QE hospital in Birmingham in February was fine. They got most of it out and took excellent care of me. Two months later I was back at work and I'm hoping to get my driving licence back in a couple of months.
On a practical note, look into whether you qualify for PIP, and if Access to Work can help you. Access to Work paid the majority of the cost of taxis to work for me because I worked in a rural location with no public transport. They've also just agreed to pay for noise cancelling headphones for me to use at work because I have memory and concentration issues, because of the tumour, surgery or meds, or a combination.
You should also qualify for a disabled person's travel pass.
And I had a key safe fitted free of charge by my local council in case I had a seizure at home and someone needed to get in.
I think I put a brave face on until the surgery and fell apart afterwards. I was very emotional, which may be due to where the tumour was, or delayed shock, not sure really. But self care is very important. You may find you get tired quickly so get plenty of rest and accept all offers of help.
You may need to drop some hours at work. I hope your employer is understanding (I'm a GP receptionist and my contract was terminated the day after I was diagnosed!). My current employer (a different GP surgery) has been more understanding but we did have a difficult meeting a few weeks ago about some issues with my work caused by the aforementioned memory and concentration problems and the brain tumour charity were very helpful, both their website and an advisor I spoke to on the phone. Under disability employment laws, they are required to make reasonable adjustments.
Please let me know if you have any questions. Always happy to help and advise or just give you a handhold x

GertrudeSteinsbook · 09/12/2023 22:14

@Papergirl1968, I’m so sorry your contract was terminated & in a GP practice too! I’m glad you’ve been able to get some support through Access to Work, I’ve just applied for PIP.
Sorry @Catunderling what I meant was that when you get diagnosed you tend to get a lot of unsolicited advice about diet. I was a very healthy eater too & it made me feel really crap especially as I have bowel cancer. So I just wanted to say that there is more measured information out there but I wouldn’t worry about any of that at the moment. Just get through it day to day if you can.

Papergirl1968 · 09/12/2023 22:30

I know @GertrudeSteinsbook it was shocking because GP practices are under the umbrella of the NHS.
They must have taken some HR advice as they quickly backtracked but I knew my card was marked and sure enough a few months later I was put on paid leave over something very minor. Not even a mistake, just an oversight, something I hadn’t got round to doing because of being rushed off my feet.
Good luck with your PIP application. Mine has just come up for renewal and I think I will lose most of it due to no longer having seizures. I think I’m going to ask them if we can defer renewal until the end of Jan when I should know if I can drive again so save going through it all twice in a matter of weeks.

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

Original poster
Catunderling · 10/12/2023 11:50

Papergirl1968 · 09/12/2023 19:52

I'm sorry you're going through this, @Catunderling
I was diagnosed with a brain tumour two and a half years ago. It was a slow growing meningioma in my frontal lobe and thankfully benign.
I was having both absence seizures and full seizures, and was initially reluctant to have surgery until I had three in 15 hours, cutting my head when I fell in the kitchen - I would have absolutely no warning and it became second nature to stand well back on the pavement when crossing the road in case I fell in front of a vehicle.
The surgery itself at the QE hospital in Birmingham in February was fine. They got most of it out and took excellent care of me. Two months later I was back at work and I'm hoping to get my driving licence back in a couple of months.
On a practical note, look into whether you qualify for PIP, and if Access to Work can help you. Access to Work paid the majority of the cost of taxis to work for me because I worked in a rural location with no public transport. They've also just agreed to pay for noise cancelling headphones for me to use at work because I have memory and concentration issues, because of the tumour, surgery or meds, or a combination.
You should also qualify for a disabled person's travel pass.
And I had a key safe fitted free of charge by my local council in case I had a seizure at home and someone needed to get in.
I think I put a brave face on until the surgery and fell apart afterwards. I was very emotional, which may be due to where the tumour was, or delayed shock, not sure really. But self care is very important. You may find you get tired quickly so get plenty of rest and accept all offers of help.
You may need to drop some hours at work. I hope your employer is understanding (I'm a GP receptionist and my contract was terminated the day after I was diagnosed!). My current employer (a different GP surgery) has been more understanding but we did have a difficult meeting a few weeks ago about some issues with my work caused by the aforementioned memory and concentration problems and the brain tumour charity were very helpful, both their website and an advisor I spoke to on the phone. Under disability employment laws, they are required to make reasonable adjustments.
Please let me know if you have any questions. Always happy to help and advise or just give you a handhold x

So glad to hear you're making a good recovery and gad a smooth experience ar the hospital. Sorry also about your ordeal ar work at such a scary time. It's pretty shocking in the caring profession especially. Great you've found somewhere new though.

OP posts:
Original poster
Catunderling · 10/12/2023 11:56

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

So sorry to hear about this, sending solidarity to you and DP 💐i really hope he's holding up well and it's as good news as possible. Thw waiting for full info and next steps is definitely unsettling.

OP posts:
Sammyjbee · 10/12/2023 12:25

It most definitely is. Allows your mind to wander into not so great places. Hopefully youll both hear this week of your next appointment. 💜

Waitingfordoggo · 10/12/2023 12:36

This must have been such a shocking diagnosis to receive OP. The words ‘brain tumour’ would strike fear in all of us, but I’m so glad to read so many positive stories and experiences here. Hopefully your journey will be similar. I wish you all the very best for the weeks and months to come. 💐

Re phantom smells which have been mentioned by a few posters. These can definitely be a sign of something neurological going on, but can also be caused by viruses- loads of people talked about a random smell of burning after having COVID. Ever since I had Covid nearly three years ago, I can occasionally get a very strong smell of baked beans! It persists for a few days and then goes again- very bizarre! So those posters who experience phantom smells should definitely speak to their GP about it (especially if they’re also having migraines) but just to say there can be other explanations.