Rare tumour awaiting diagnosis

This is something I never thought I’d be doing having just turned 25 but here I am and I hope you don’t mind me sharing. I’m absolutely terrified as they have recently found a grapefruit sized tumour on my adrenaline gland and I am awaiting one final scan before they decide what to do next. The stat is 1 in 10 of the half a million chance of getting this tumour in the first place, that it’s cancerous. That’s 1 in 5 million. I know that number is incredibly small but I think just to be told what the likelihood is that you might have cancer is petrifying and I just feel like my luck isn’t in my favour at the moment. The hardest part is when you tell people and say the word “tumour” and their face drops. I’m trying to keep it together but I just want to know if it cancerous or not. The waiting game is mental torture. If it is or isn’t I will need constant checks now for the rest of my life. Everyone keeps saying how young I am and how rare this is which makes it even harder. I feel like I’ve got my whole life ahead but how I am going to get over this if it cancerous and how do I do that to the people around me. 

Any advice on the waiting game would be really appreciated. 

  • Hi Ally, 

    Genetically predisposed to pheochromocytoma here (I'm guessing you had insane blood pressure / adrenaline surges) and, whilst I'm still clear, several family members have had it.

    ALL ARE ALIVE.

    Like you, one case was the size of an orange and nothing a decade later. Other cases have been similar. Yes, it's rare, but if it's not genetic (and even then most cases are still benign) you'll be one and done.

    There's a UK Pheochromocytoma and Paraganglioma FB group which has some really good resources and whilst it's terrifying as you're unfortunately experiencing, many are living healthy and full lives. As are all my siblings who have had it. 

    Best, 

    G x

  • Thank you, really appreciate your kind words. Hoping your family are all well x