Just diagnosed with brain tumour

[Catunderling]

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.

Slitheringheights sending you a hug

I hope you got your call. The next steps will be scary so I just want to add that I've known two people have brain tumours and they are both doing well years later after surgery.

I had a brain tumour removed 2 years ago tomorrow. I'm perfectly fine now. My scar is hidden by my hair and you'd never know if you met me.
I have an MRI every year, but no other medical involvement.
I'd stay away from the Facebook group, it's worst-case stuff. The Brain Tumour Charity is good though.
If you are in SE, St George's is amazing. I'm so grateful to them. 🙏

I'm relieved they got you in on a cancellation, OP!!

Sending you best wishes and hoping to hear for good news soon!

Sending you hugs, what a time you've had. With any luck it might be a benign lesion that's been hanging around quietly. Either way, the way I see it is that at least we know the bugger's there now so something can be done (or not so if it's watch and wait with this one). Really hope you hear back soon xxx

Thanks and I'm so glad to hear it. Are the scans indefinite?

Agreed re avoiding reading any sources at this stage. TBH even the brain tumour charity, wonderful though they are. For some reason I keep getting posts with people who have had, like you, say worst case scenario disgnoses so I've had to unfollow for now until I know what I'm dealing with! No point scaring myself silly!

Very sensible plan!

I understand the waiting can be difficult. I was 'lucky' in that I went from MRI to operating theatre in 48hrs.
MRIs were every 6 months for a year, then after a year, then it'll be after 2 years, then after 5 years, then I'll be discharged. 🤞
I've had so many MRIs now I fall asleep in there. Yoga breathing helps.

Ha I actually find MRIs quite relaxing with the loud swishing noises!

Happy new year all..

Surgeon in a couple of days. Spoke to neurologist and it is apparently a ganglioglioma and low grade according to the MDT which should be hugely assuring but she mentioned something about her thinking the contrast shows some activity so I'm not too sure whether that means it has the potential to be sketchier. I was sort of between 2 consultants- the one who was part of the MDT and the one who called due to the first going off sick so not sure whether she just wasn't party to the full discussion and wanted to make sure there weren't any surprises if that comes up with the surgeon.i suppose overall it could be a lot worse of an initial impression but I'm left guessing a bit to be honest! Not a long wait though.

I will say I'm so happy to get Christmas and new year out of the way, it's felt like such a tough, suspenseful time with everyone so busy (I don't live near many friends). Feels like a bit of a watershed now with the endless waiting done at least

Catunderling · Today 08:38
happy new year. My doctor thinks I have a ganglioma as well sorry for spelling lol . It’s in my heart though. My scan was 8 weeks ago and only hearing now. But they don’t know till they do a biopsy, I’d rather they just monitor it than a heart biopsy. reading these are usually benign and very slow growing. Which fills me with hope.

@Catunderling how are you doing? Hope you're not affected by the strikes.

Hey thanks for thinking of me. Surgery in a couple of weeks. Surgical team seem amazing and have said they don't think it's high grade but are a bit less sure than the MDT on what type of tumour it actually is due to the position. I suppose you can only see so much from an MRI.

It's all a really anxious time not helped by the steroids!! I'm extremely nervous about the procedure combined with the wait and the symptoms and hoping for a good outcome. It's just a lot

Hey. glad to hear its all moving fast for you and that it is hopefully low grade. Cant imagine how scared your feeling. Have you told your family now.
We are still waiting for results from the MRI on the 28th. Cant cope with the waiting 😩

How are you doing?

Don’t forget to give yourself time to process this properly and pamper yourself.

my situation is different as my child had the brain tumour and she was quite young.
I remember feeling that I had always to be the strong one, reassuring everyone in the family and carry them. That I could not be upset or scared or plain angry and worried. As I would be letting them down and not sure it wasn’t selfish as I would look at the other families in the hospital and say I am very lucky in that moment.

it was another parent on the ward who gave me some shower stuff and told me that they had run a bath and I had to get in the bloody tub and cry and be angry and feel bloody sorry for myself. Then get out and get back into fighting mode. I think that advice and the understanding of emotions is some of the kindest moments I will remember.
The science and medical knowledge is helpful but it can be difficult as I was in that mode in communications constantly. The wisdom and knowledge of the other parent was needed.
take time for yourself

Then other times we were just trying to help each other and ridicule the ridiculousness of situations

at that point I was awarded ‘The ‘on tests’ worst parent’ as the Haematology lab technicians must have been questioning why a HCG test was being performed on a not yet 6year old girl and checking clotting due to the number of bruises on her’
So but after all that we have a different humour

The other families and people who are in a similar situation are all very good sources for real information and to offer advice
i really appreciate the Brain Tumour charity
we also had incredible support from the nurses on the ward and the charity that was specifically for her tumour.

wishing you lots of luck and will continue to read this thread to see how you are doing x

Hello thanks for asking, surgery has gone well, they got all of it as far as can be seen. just waiting for biopsy results to see what it actually was and if further action needed. Eyesight recovering on ones side a bit and slight headaches but not feeling too bad!! Feeling irrationally pissed off at the woman opposite me who was very noisy and prevented me sleeping (I'm sure she eas in a lot discomfort im not unsympathetic) and need to let that go. So glad to be home!! Hope all others waiting for news have had positive movement

How lovely of you to update us. I think everyone sleeps better in their own bed.

I‘m made up for you and have everything crossed for your biopsies. x

Glad to read the surgery has taken place. Best of luck for the results! 💐

Hope all goes well!

So glad surgery went well!!

I hope you recover quickly and get good news soon. 💐

Glad all went well OP. Hope you manage a bit of sleep and it’s good news on the biopsy.

You definitely do sleep better in your own bed. Sending you positive thoughts.

Glad it went well! Rest up now and get better.
Have you considered asking if there's any genetic reason for the tumour? Testing might be available to you.

Glad to hear your op is over OP. Keep us updated xx