I was diagnosed with a Meningioma back in 2013 when it was 19mmx9mm on right side I had MRI scans & it was said it has not grown & i most likely had it for years & even decades & after about 5 years was discharged
I had originally told that if i did need treatment i would have either surgery or radiation
Since then had moved so had a so got referred & had a MRI scan 2022 was told all was okay & have another one in 2 years
Just had the scan (July) went for results where i am told that it has grown it's 33mm i think was said
I told them i have low platelets 48 so surgery is out, they are to discuss at a meeting on Tuesday on if i can have radiation
I don't get headaches as such but do get pain at temple going across forehead, but it more like someone sticking a pin in me to a ache more than pain but don't last more than a minute or so but can get them serveral times a day or even serveral times in a hour or two
I was wondering at what size would treatment be & how if i do have radiation how it can effect me do i lose my hair or patches (if so rather shave it off)
Is there anything i should know so I can ask the right questions
Hello Atkins64
I hope you do not mind me replying as I had a different type of cancer to you. By doing so it should bump your post and someone who has had a similar experience and treatment to yourself may see it and offer some more specific support.
I am sorry to hear of your long journey with the meningioma and that there has been some growth which may need some treatment.
I hope that the MDT meeting on Tuesday goes well and that it can bring some answers as to what the next steps may be.
I had radiotherapy myself back in 2022 and hair loss was only in the area treated and it soon came back. If they offer radiotherapy and you decide to go ahead my experience was that there was a detailed radiotherapy planning scan that takes place around 3 weeks before it starts. There was plenty of chance to go through what the treatment would entail and what side effects could be expected. The radiotherapists then planned the treatment to target specifically the areas needed and to also minimise any effects on healthy tissue. The treatment itself was painless as the machine does not touch you. I did find it quite tiring though.
I will pop a couple of links here that may help. If you do want anymore information, please do give the Support Line a call.
Meningioma | Macmillan Cancer Support
Radiotherapy for a brain tumour | Macmillan Cancer Support
I wish you well with any treatment that you have, but in the meantime we are here if you need us.
Jane
Hi Janice
If they offer radiotherapy I would speak to your CNS. Mine arranged patient transport for every radiotherapy appointment- there and back, no charge with the red cross- they said with radiotherapy there was a medical need. For more routine appointments- not connected to oncology- in my hospital there are volunteer drivers who are cheaper than a taxi as they are subsidised.
If you are having radiotherapy for a meningioma, I can not see there being an issue with getting some sort of support with transport.
With the hair loss it may be work waiting to see how much of an area is affected before making a decision. But they should be able to tell you at your planning scan. It may be a very small area that you can disguise.
Hi Janice
I am the same- I like to think around what could happen do I have time to prepare. It will also help when you see the consultant- I often write down a list of questions to have ready.
Jane
