Watching and waiting - brain tumour

I have a lesion in my pons. From 3 mri scans they are unable to tell if it is an inflammation or a tumour. Having had this hang over me for 2 months I’ve just been told that I need to wait 3 more months and redo the mri again to see what change has happened so they can decide what it is. 

Over this period I have had symptoms that have changed - shaking, loss of balance which at its worse left me unable to walk more then a couple of hundred meters and falling regularly. My breathing is struggling and so is my thinking. I get a lot of nerve pain in my arm and leg on my left hand side. Some days seem a lot better than others though.

I have 3 kids who are 16,13 &11. Unless it’s a certainty then they don’t need to know what’s going on and worry. Equally though it makes me very anxious about telling friends in case it gets back to them as that would be horrendous. It means that I don’t have as much support 

How do you cope with the waiting? I’m finding it awful living with the uncertainty.

  • Hello RacheyAE, 

    What an anxious time it must be for you, watching and waiting and being told that they cannot tell at the moment whether this lesion is an inflammation or a tumour. Poor you, you've had this hanging over your head for 2 months and now you're finding yourself having to wait another three months to see what change has happened so that they can decide what it is. Living for months on end with this uncertainty is really hard as so many members of our community will know only too well. 

    Do mention any symptom changes you notice as you are waiting to your doctor or medical team as they will want to know about these and how this is affecting you. Even if some days are better than others, it's definitely worth making them aware of any symptom change that has occurred over this period. 

    I can completely understand why you would not want to alarm your children while you don't know yourself what is going on but that means you are finding it hard to talk to others about you are feeling in case it gets back to them. I hope that this forum will give you an anonymous space to share your thoughts and feelings with others who understand what you are going through. 

    There is sadly no magic recipe to cope with the long wait as it's bound to be a difficult time but there are strategies that can help.  I would suggest you read our helpful tips on how to cope while waiting for important news.  One useful piece of advice is to stay well away from the temptation to look anything up on Google as this will have no other effect than make you more anxious and leaving you with a greater feeling of uncertainty. 

    I hope this helps a little and that you will hear from others who are going through something similar or who have been in a similar position before and that they will have some good tips on what worked best for them. 

    Keeping everything crossed for you that you get some answers soon and that it all turns out to be nothing too concerning. 

    Best wishes,

    Lucie, Cancer Chat Moderator