newly diagnosed with left frontal lobe meningioma, and told not to worry

[musicloving_girl]

I have been having awful headaches since November 2023 I went to a&e in Jan from the advice of my doctors. I had a ct scan which showed a swollen mass on my brain but it’s most likely benign as it hasn’t grown since 2021. That was news to me as I didn’t even know I had this as back in 2021 I attended a&e with the worst headache of my life no amount of pain relief helped they done a ct scan but said it was down to a covid headache and I went home. Why was i not told about this finding. So fast forward January 2024 they refer for a MRI to check it out. I then have to chase up my results and I’m told over the phone a short description of what I have I then said to the receptionist is it a brain tumour her response was oh no I don’t think so let me check with the doctor she then comes back and confirms it is which was a shock. But I’m not given anymore information. Have I got to see a specialist do I need regular MRI’s absolutely no information. I insist on a gp appointment to discuss findings but I’m just a little lost about it all. Any help would be great 😊

[Simply71]

Oh I’m so sorry that you’ve found out about your tumour in such an awful way. My GP was a lot more helpful than the consultant I saw at my local hospital and pushed for me to see a neurosurgeon at Kings as my tumour had grown between scans. You need to get to see your doctor face to face and get some answers especially if you’re having such bad headaches. As it hasn’t grown you maybe put on watch and wait with repeated scans as it hasn’t grown but would hope not for your sake. The brain tumour website has a lot of helpful information and the wonderful people on this forum are a great source of knowledge and comfort too.

Hoping you get some answers soon and all goes well for you. 😊

[MadTrucker]

Morning, wow..just wow!Not a good way to find out your diagnosis but as Simply71 said loads support and ears on here!

Face to face with doctor definitely 1st then ask to be referred to a Neurosurgeon or Neurosurgery department in your local hospital.

You need answers....to make it right in your own head/mind!!

Good luck 👍

[Razz01]

Hi,

I'm sorry to read about your experience, I suffered something quite similar. I was diagnosed with MS in 2020 and for that reason have a scan every year to monitor it. My last scan for this was in March 2023 and I got the results end of May. I was very confused when the nurse advised that my MS was all fine, no change, but my meningioma had grown. I explained that I didn't know what she was talking about and that I didnt know what a meningioma was. You can imagine my shock when she explained. I then asked how they knew it had grown and was even more shocked when then advised that it had been present since 2020, just nobody thought to mention it. I was in the process of moving house and had planned to move my treatment at a later date but immediately contacted my new GP who was fantastic. I was refereed immediately to Aberdeen Royal Infirmary where I saw a neurologist who explained everything. My meningioma appears to be quite aggressive and is growing quickly so I have just had another MRI, expecting the results any day and then if its grown which we are all expecting it will be surgery.

My advice would be to contact your GP immediately and ask to be referred to Neurosurgery at your local hospital, ask them if they can mark it as a priority to be seen. You will then hopefully get an appointment with a neurosurgeon who can hopefully give you a lot more information and answer your many questions which you will undoubtedly have. If you dont get anything back I would also try and google the neurosurgery department at your local hospital and try and contact them yourself. I have unfortunately found that if you wait for others you could be waiting a long time. Its not generally in my nature to be pushy but I have found that its only by chasing people and keep being proactive that you get heard. At the end of the day its your health and its super important that everything is done that can be.

I guess depending on what the neurosurgeon says would depend on whether they watch and wait and scan you yearly or whether they feel surgery is needed. I think many people can have these for years and nothing needs to be done as they are so slow growing.

I really hope that you get to speak and see someone soon

[Don12]

Hi, I am so sorry to hear you are going through this with little support. When I had a medulloblastoma and then a meningioma, it made a massive difference researching and finding a Neurosurgeon, who I came to trust and feel comfortable with. I had to see a few but I am very glad I did and didn't just go with the first person my GP referred on me to. I also felt like I was taking back a little bit of control, although it of course didn’t stop the floodgates opening behind closed doors!

I’ve just been diagnosed with another meningioma, after going into my local hospital for something else, and told they were going to adopt the ‘watch and wait' approach. Apparently it shows on a scan in 2019 but I wasn't informed. Sadly, no dates arranged for a follow up or future MRI.

I called the Doctor I've seen before at another hospital and got an appointment with him straight away. With him on the case, I am confident that it will be closely monitored and he will listen and help if any of the symptoms get too much.

It's very easy for one hospital to get hold of a scan or notes from another and the plan is now for another MRI and consultation in six months time. Most likely it will be every six months or a year in my case.

I am very lucky as his secretary has been amazing, helping me to chase results and get appointments fairly quickly. It is amazing the influence they can have. A good secretary probably comes with a good Neurosurgeon.

Not sure if any of this helps but good luck and I hope it all works out for you.