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Likely new brain malignancy, scared and confused

Smand35e7b2
  • 12 replies
  • 56 subscribers
  • 156 views

I am a 46 year old male from the UK, very fit and healthy, I belong to two running clubs and go to CrossFit twice a week, I've recently run marathons, ultramarathons etc.

This Monday evening, with no previous symptoms, I collapsed and had a seizure at my running club.

I was taken to hospital, where they ran various tests. Initially they did a CT scan which they then followed up with an MRI head scan using a fluid, which has revealed "A solitary ring enhancing lesion within the right temporal lobe causing mass effect". A further body CT was clear and the diagnosis is a "likely new brain malignancy"

I am currently on Dexamethasone, Omeprazole and Leveteracetam.

My case is being discussed at King's College London today, and I will hopefully find out the next steps today or early next week.

I feel very scared and confused right now as this has come completely out of the blue, and obviously I can't help but think of worst case scenarios. Any advice or suggestions are welcomed.

  • Yes, its scary, I was in a similar situation in July 24. Had an awake craniotomy then 6 weeks of radiochemo combined, then months of oral chemo. Here I am today fit and well! I am having 3 monthly scans but no actual treatment. Keep us posted and good luck . 

  • in reply to Tashie

    Thank you for your reply Tashie, I am so glad things seem to be going well for you!

  • Hi there, I’m in the same position as Tashie - my operation was three years ago and I’m doing fine, with six-monthly scans.

    It’s scary as hell, no getting round it, but in my experience, anything starts to feel normal after a while. And young, fit and healthy is a really good place from which to start.

    yes, please do keep us posted, Alex xx

  • Oh yes, as for advice, take any offers going - drives to the hospital, work breaks, anything you need. And always have a hospital bag ready - phone and cables, toothbrush, comfortable bedwear etc - some operations come up fast!

  • in reply to Leeluu

    Thank you for both your replies Leeluu, I will keep you posted!

  • in reply to Smand35e7b2

    Thank you. If given a  choice go for an awake craniotomy….i had worse times at the dentist ! 

  • Back in January 24 they found 2 metastatic tumours one in the right parietal lobe measuring 26x26x25mm and another in the corpus callosum, I had stereotactic radiotherapy and to date the one in the parietal lobe has shrunk to nothing and the other one is stable, so fingers crossed for you that they can destroy it. 

  • Hi  ,

    There's no getting away from it, discovery of a brain lesion is scary. It was the worst time of my life.  And I still don't know the difference between a lesion and a tumour.
    But that was nearly three years ago and I'm still here.  Be aware that lots of treatment options may be discussed and possibly ruled out, words like inoperable are not easy to hear.  It took a few weeks for me to get a first recommended treatment, which was radiotherapy, and I've since moved on to targeted therapies.  There's lots of options now. Treatment can be rough but I have found the oncology team to be wonderful in guiding me through it.

    Best wishes.

  • in reply to Bratpackstress

    Glad to hear your story, thank you!

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