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MEST KIDNEY TUMOUR

Delly21
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Hi all, I'm Adele I am 49yrs and have just been diagnosed with an extremely rare begnin tumour measuring 8cms in my right kidney. Its taken 8months of banging on the drum and finally a kidney biopsy to get to this diagnosis after suffering with constant pain in my right side and feeling sick most of the time.. I am informed that there are only 100 people in the world with this particular rare tumour so im doubtful I will get to chat to a fellow sufferer but as my options are to live with this under monitoring for the rest of my life  and hope it doesnt become malignant or have a nephrectomy which scares me too. It would be great to have some help or guidance and  chats with you lovely people and your experiences as  I have read alot of posts on here and think you are all amazingly brave. 

Best wishes to all :-)

  • Hello Adele

    I'm sorry to hear that you've had some ongoing health concerns but it's good to hear that you finally have a diagnosis and that despite it being a rare type of tumour no treatment is needed for the moment. 

    I know that we will have members here who live with regular monitoring and understand the anxieties that this can bring. Hopefully, some of them will post to share their experiences with you. 

    Whilst it can be difficult to connect with others when you have a rare diagnosis I wanted to suggest 3 kidney specific organisations that you may want to consider checking out. It may be that you're able to find someone else with this diagnosis through a specific group. They are Kidney Care UK, Kidney Research UK and the National Kidney Federation. Hopefully one of these groups may also be able to give you some further information and support. 

    I hope this helps Adele and wish you well in the future. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Hello Jenn

     Thankyou for your message , I really appreciate any direction for further support and will certainly  contact the groups you have kindly listed.

    Besr wishes 

    Adele 

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