Advice please

[Ladyofthelake]

Hi, I have had an incidental finding of a ‘6mm meningioma in the right frontal location’ when I had a head CT scan after a fall. This was last Tues, 13th. I got an appt to see my GP on Monday & she said she would refer to neurologist, but I have since realised that she didn’t mention timescales - should I expect an urgent referral? Also she was very much downplaying it , saying ‘its not cancer’ but she can’t know, she’s not a neurologist 🤔She also stopped me /talked over me when I started to talk about the fact that I have been having a ‘foggy head’ for quite a while & ‘losing’ words , so I didn’t get to say that ( I had been putting that down to age , I’m 65). Also are there certain hospitals that are more experienced in meningiomas/these treatments? ( I live in Woking Surrey)Did any of you ask for a specific hospital? I would be most grateful for any advice, thank you

[Satishouse]

Hi I'm 57 i had a 4cm tumour removed in November at Addenbrooks, mine was front lobal they couldn't say until it was removed and tested that it was benign. They have a better idea once you have a MRI scan. They may watch and wait if its 6mm.

[Maddie_TBTC Administrator]

Hi there, thank you for reaching out. I am really sorry to hear about your diagnosis and that you feel that you did not have a chance to discuss everything through with your GP. We would suggest going back to your GP to ask about how long you should expect to wait to see a specialist. There is a guide to NHS waiting times, however this is dependant on a number of factors: nhs.uk/nhs-services/hospita... We would also suggest writing down the symptoms you are experiencing and how regular you experience these, and share with with the doctor so they are aware of how it is affecting your quality of life. In terms of choosing a hospital, we have some information on our website that might be helpful to read through: thebraintumourcharity.org/b... I hope this is helpful, please do reach out if you have any further questions. Best wishes, Maddie

[Cast_away]

hi there

Sorry to hear your worries.

I was diagnosed with a 6cm meningioma in 2022 following an MRI after symptoms of confusion, speech difficulty and headaches. This was carried out urgently because of my confusion and revealed the tumour and extensive oedema. As such I was admitted as an urgent case and emergency 16 hour surgery conducted to remove the tumour.

The craniotomy was conducted by the neurosurgery team at Addenbrookes hospital Cambridge within days of my admission.

I now understand a little more about meningiomas. They are often slow growing and you may have one for many years and be asymptomatic and when found, if they do not present immediate risk, it may be advised to “wait and watch “ before any treatment is considered necessary.

My surgeon advised me before surgery that my scan showed my meningioma to be benign. This was confirmed by post surgery pathology.

All good wishes to you at this worrying time for you.

[Don12]

Hi,

I am so sorry to hear your diagnosis. When I had my previous meningioma there was little to no plan of action so I researched my own Neurosurgeon. Hospitals can easily access notes or scans carried out at a different hospital. I found someone I trusted and felt comfortable with. I had to see a few but I am very glad I did. He had to operate and did an amazing job. For me it is about finding the right Neurosurgeon. They often work at different hospitals. I've just been diagnosed with another brain tumor and called the Doctor I've seen before straight away. We have a plan and he works at three different hospitals. I've often gone to my GP and asked for an open referral letter so I could see someone I think would be in the best position to help me.

Not sure if this helps but good luck with everything and I hope it works out well for you.

[bgrgrl]

My meningioma was found by MRI after months of feeling foggy and referral by my primary care for a "psych eval." Fortunately the ER doc was astute enough to order scans.I firmly believe in personal advocacy and encourage you to seek additional information, and get that referral. But don't panic.

Meningiomas are slow growing, and almost always benign (as mine was.) Get online and do some research, and it will help you to have a list of questions ready.

Good luck. ✌️🙏

[Limegreen2024]

Hi

I am so sorry to hear of your diagnosis. Unfortunately I also had quite a long wait before I actually got to see my Neurosurgeon via the NHS referral route - 5 months from diagnosis - the waiting can be so stressful. I had to keep writing to my GP to try to put the pressure on. I am not sure which hospitals would specialise in Meningioma treatment - you could look into one of the London Hospitals.

Like you when I did get to see my Neurosurgeon, he seemed to make light of it and has put me on watch and wait!! However my consultant did advise me to speak to the Neurosurgical nurse who was part of his team and I have to say she has been so reassuring.

Wishing you all the best.