So Im 56 and last week I was told by my Oncologist that after an 8mth horrific battle with T4 tonsil cancer ( which had spread into 7 lymph nodes base of tongue and activity in left tonsil )6that I had a clear MRI …..( PET scan in 2 weeks).
Had a few tears of relief thinking about losing 8 teeth /PEG fitted/7 weeks highest hrade Radiotherapy plus 2 overnight 10 hr Chemos nearly 5 weeks as inpatient plus terrible side effects and then he said they had found something else on my original MRI that was still there … a brain tumour !
I was totally shocked,I didn't hear anything else as my thoughts went straight to thinking of my Dad who died aged 60 from a GBM Grade4 terminal BT .
Im up and down like a yo yo waiting for my appointment with the brain surgeons to discuss my BT and what they plan to do next.
Just wanted to speak to others who have the same BT .
Thank you
Written by
EllieMay7
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If you are writing this post because they have found an Acoustic Neuroma, then you can be confident that it’s not cancer. It’s not good news and you’ve been through a lot, but they are generally slow growing and if it’s been found early enough there will be lots of time to discuss treatment plans . Hopefully it will be stable in which case you will just wait and watch it to see if it will grow rather than face any treatment.
It is horrible news after all you’ve just been through. Did they tell you the size of the tumour?
I think its an acoustic Neuroma as he said it was under my left ear.I have no idea of the size but i do have ringing in my ears for months and pain under my ear but I also have lymphedma from radiotherapy.Ive researched them but Im worried about it growing and needing surgery/radiotherapy or becoming fatal .
I just cant believe it had stage2 skin cancer on end of nose requiring MOHs surgery live with my new larger scared one then the Tonsil cancer 2023 and now this its just overwhelming at the moment x
I can totally understand why you are worried. I was so stressed when I was diagnosed and I hadn’t been through everything you have been through. I can reassure you that Acoustic Neuromas are almost always slow growing and are not fatal. You will be in the care of an expert medical team who will watch and assess and make sure you are cared for in the best way for your future health. For some that is just leaving it alone, for others it is radiotherapy and for some it is surgical removal. It all depends on its size and location. I needed surgery 18 months ago and am happy and healthy living a good life - altered by the experience, but life is still good. I know it’s easily said, but try not to stress. It doesn’t help anything and can actually make any symptoms worse. Sending love your way Debbie ❤️
Just wanted to update the lovely people who responded to my original post x
Monday I was told by ENT consultant its not an acoustic neuroma its a meningioma! and unlike acoustic neuromas thaye can turn cancerous !
Still waiting for apt with Neurosurgeon to get more info on my BT.
But its all too close for comfort ,With my Dad Grandfather dying from BTs and friend whod previously had Lymphoma died this morning after massive siezure on Wednesday from a BT Im feeling worried about the whole thing but I know from my Tonsil cancer journey ots the fear of the inknown … apt cant come quick enough xx
I popped back on here to see how you’re doing Debbie, the relentless onslaught for you must be exhausting to say the least. Not the news you needed at all, but as with ANs, the support you can get via the Brainstrust really could be helpful. In our wonderful hypnotherapy reset sessions with Louise weekly, just being able to drift to a calm place with her guiding us makes so much difference to my day/week. The overwhelm is something that is recognised by many of us with living with cancer/tumours/ conditions and finding a moment’s rest from that feeling is good. Breathe, know you are not alone. I hope you find the things that will calm and hold you through this next hurdle so you can find joy and balance and wellness in your life again soon x Lin
Hi ElliMay, what a hideous time you’ve been having, I am so sorry you’ve been hit with yet more…
The very very big difference with having an acoustic neuroma tumour is that they are benign, WILL NOT kill you, and a very large proportion of people with these fairly rare squatters never need treatment as they stop growing. Yours may well have been discovered by accident and you’d never have known it was there. If it is on the larger size and need treatment, there are options of non invasive cyber or gamma radio, or surgery. For most the option is to watch and wait, check the growth rate in the first 6 months, then yearly scans, with support for any symptoms you might be getting like one sided hearing loss/tinnitus balance issues bring the most common. ( I have a 25mm one and only have the single sided tinnitus) The crucial thing is not to panic, really nurture and attend to yourself as I’m sure you’ve had to get used to doing, know you’re not alone ( contact the brainstrust for one to one support, hypnotherapy, peer support etc) This is absolutely not the same story as your Pa.. these are inconvenient squatters that we can live our very best lives alongside, and treatment, if needed, is available xx Lin 💐
What an absolutely hideous time you’ve been having Debbie, it must just feel utterly overwhelming. Do reach out to any of the support services so you get one to one support. Brainstrust offer the most lovely hypnotherapy sessions with an amazing person Louise… she’s so calming and we have a weekly ‘reset’. Your poor brain must be over drive with panic. Take a moment to breathe, hand on your heart. You need the time for yourself to truly be nurtured.
I was just 60 and found out I had rectal cancer and had to have major surgery resulting in a colostomy bag a few months later went deaf suddenly in my right ear went to GP who said I was stressed! A few months later after going back and insisting on referral to ENT got one and the routine scan after showed the AN I am lucky that since then it has not grown and may even have shrunk a little so on watch and wait my dad also died at 66 from a brain tumour that had been missed xxx he also had prostate cancer and said his fleeting memory problems were because of that! I hope your AN is a tiny one and doesn’t need any treatment although if it does there is also a group on Facebook which is very supportive and can give advice if needed I wish you all the best fellow warrior 👊
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Hello from Beth at The Brain Tumour Charity
awaiting diagnosis from MRI suspected AN
New to all this and looking to reach out to others and stop using Dr Google!!
Help please has anyone found a different treatment or quicker treatment has been available moving from NHS To Private ?
