Is it cancer?

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Hi everyone - I hope it’s ok to post here as I haven’t received a diagnosis as of yet. I’m very nervous about the journey ahead. I’ll share a bit of my story and hope that somebody with a similar experience can offer me some hope.

Mass on left kidney found incidentally during CT scan for problems arising from gallbladder removal. Consultant predicted angiomyolipoma (10th April)

Had follow up CT scan (25th April) and met with consultant who referred me to urology to cross check scans. Mass around 4.5cm (24th May)

Met consultant who said it could still be AML, but very possibly early cancer. My scans showed no visible presence of fat meaning they can’t definitively say if the mass is or isn’t AML. Discussed biopsy vs partial nephrectomy and have decided surgery is the best/most reliable course of action. (11th July)

Have been told the waiting list for surgery is around 3 months 

I think during my more recent consultation where cancer was actually mentioned, I kind of zoned out a bit and couldn’t think of any meaningful questions to ask. But now I have so many. I feel so anxious that I am physically sick and can’t sleep 

  • Hi there, pleased to meet you, albeit here.  Welcome to a great bunch ofpeople who have all experienced the uncertainty and the waiting you are currently under.   It's quite normal to have loads of questions, and it's also to be expected that you can't think of them on-the-spot after being hit with the cancer discussion.    I've been in lots of appointments with medical people where they say "if you think of questions when you get home, please give us a ring".  I would suggest doing that, either via the phone number on the appointments letter, or the consultants secretary, or you may have been given a specialist nurse contact?  

    Another option would be to phone the helpline here.  0808 808 0000.  I've phoned them before.  The team is very knowledagbe and friendly.  

  • Hi Mmum 

    thank you for getting back to me. I do have a contact number for a nurse - I forgot her information was provided during the consultation. I’ve left a message with the urology secretary and she will give me a call back tomorrow.

    My anxiety definitely worsens at night, I feel a bit better today as I’ve been busy with the children and work. 

    Thank you again for taking the time to reply x

  • Hi DollyDimples,

    As you mentioned in a different post, our experience seems quite similar. 

    It's very overwhelming at appointments (and the lead up/aftermath). If you have someone to go with you, they can take some notes for you. I went alone and I took a notebook and pen and made sure I wrote everything down. I found that I was able to just concentrate on taking notes, and then asking questions based on what the notes were telling me - it's hard to explain, but it just felt a little less personal and that it related to someone else.

    Because I had a separate notebook, I would jot down questions to ask ahead of my next appointment.

    Anyway, just an idea.

    All the best, 

    Jonathan