Congenital disease

I was diagnosed with Birt Hogg Dube Syndrome around 10 years ago. Since my diagnosis I have developed fibrofolliculomas on my face, neck, back and chest. They look like whiteheads although they are actually benign tumours at the base of hair follicles. Last year I underwent cryotherapy for kidney cancer. As my condition means I will continue to develop kidney tumours I am monitored regularly. After my latest surveillance appointment I have been told I need to have further testing as they need to check out why my kidney functioning has halved. To be honest I do not know how much more I can take.  There seems to be no escape or respite from this. I am frightened and angry. I feel defeated today. I have asked for helpful hints regarding depression in the past which have helped. Is there ever a time just to give up? 

  • Hi Liveeachday, 

    I'm sorry to read about what you're going through at the moment and how you are feeling as a result. I think you echo the thoughts of many members here who have been in a similar position and I'm sure they will be along soon to offer their support and share their advice and experiences with you. 

    Our cancer nurses are just a phone call away as well if you would like to chat to them about this. Their freephone number is 0808 800 4040 and are available Monday - Friday between 9a.m - 5p.m. 

    I know you're finding things tough but I just wanted to let you know that we are here for you Liveeachday and will do what we can to help you at this difficult time.

    Kind regards, 

    Steph, Cancer Chat Moderator