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angiomyolipoma -Benign Kidney Tumour

emilykate96
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Hi all, 

 

I am just looking for a bit of reassurance really more than anything. A bit of background I am a 25 year old female. I had my right kidney removed when I was 7 years old due to it never growing. About 3 weeks ago I had an ultrasound on my left kidney this was just a routine thing. I got told on Friday by the doctor they found a angiomyolipoma which was found totally by accident and that  I shouldn't worry. I asked a couple of questions but didn't ask everything due to being in a bit of shock. I am going to give her another call tomorrow to discuss further. She did say that she will inform the urologist so it can be looked into fruther and have either scans every 6 months or yearly scans depending on how big it is. So basically, at this moment in time I have no clue how big it is. I'm now having panic attack after panic attack thinking i'm going to die becaue I stupidly read up on this and about hemoraging etc. And I got incredibly upset because i'm even more conerned because I only have one kidney. And it sounds silly but I was getting upset because I've never had kids and I was scared i'm going to die before I can even do that. 

I'm just in a massive state of panic right now and I just don't know what to do with myself and i'm just so upset. So any reaasurance or stories right now would be great. I just think my biggest concern is i'm going to get really ill and die basically. Sorry to put it so bluntly. I just want to add - I'm having no kind of pain or symptoms at all so I suppose that's a positive?

 

Thanks everyone, 

Emily x 

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    Hi Emily, 

    This has jogged my memory as a work colleague had exactly the same thing, it was a while ago so some details maybe a little skewed but I'm sure he said anything over 4cm is considered large enough to need treatment and anything under was too small to even worry about needing any sort of intervention. 
    They really didn't seem worried about it, if I remember his was around the 4-5cm mark and they did a procedure on him which somehow stopped the blood flow to the lump which stopped the growth and risk of a bleed. He was in and out in no time. 
    He did say they offered some drugs that also stop it's growth but he wanted peace of mind, I'm sure they offered a few options on treatment and they said it's also a very very common type of tumour. 
    I'm sure you'll be absolutely fine and the fact they've already suggested repeat scans rather than rushing you in for any treatments tells me they aren't very worried about it. 

     

  • Offline in reply to Tankclark

    Hi there! 

    Thank you so much for your reply this has actually put my mind at ease. I rang the doctor earlier and asked about the size and it's only currently at 4mm so it's teeny tiny so either they've caught it incredibly early or, it's been there for a while and not changed size at all. The last scan I had on my kidney was 5 years ago so it could have been there for the past 2 years and I would have never known it's just by chance they found it really! 

    It is also good to know that there are options out there and it you know, doesn't automatically mean the worst is going to happen. I think I just tend to let my mind run away a bit in these kinds of situations. Also another positive is when I spoke to the doctor because of Covid the waiting list for anything is long they now have this service where a doctor can ask the question to a deparment lets say. So in my case, urology. So instead of waiting for months on end for another scan they can look at what they found in the recent one and say either yes get her in lets do more tests or no, we're not worried come back in a year. Which I suppoe is really good :happy: So i've only got a week or so to wait for the answer for that! 

     

    Thanks again, I really appreciate your time in replying :happy:

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