Urachal Cancer

Having just experienced urachal cancer (1/1000000 frequency), I wanted post so anyone else who gets this diagnosis knows they aren’t alone. I believe there are at least 5 people in the north west of England but when I first got this diagnosis there was virtually nothing in terms of fellow sufferers or even that much information available. I’ve worked in genomics for 20 years dealing with many cancer researchers from different organisations and I hadn’t heard of it. Currently I’m cancer free and if I can help anyone with urachal cancer reading this. Please get in touch.

  • Hi  and welcome to the community. I have a different rare cancer (Blood Cancer) so can understand the challenges in part as each journey is different.

    I did a word such on Urachal Cancer using the search tool Mag right near the top and once I selected 'everywhere' I did find a few posts on the same cancer.

    Wishing you all the best.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi, thanks for the post highlander, I read about your incredible cancer journey and glad that you are doing so well all things considered. The diagnosis and treatment of all cancers is developing rapidly. Working with many of the research group and organisations, I truly believe there is hope for everyone, though I know it’s not easier to remain positive at all times despite what everyone keeps saying! As urachal is only treated by surgery, catching it early makes a big difference. Not having to endure the chemo and radiotherapy as well as other treatments almost makes me feel like a bit of a fraud knowing what others have to go through, but as you say, every journey is different.

  • Hi again , I was just about to update my profile when your email notification came in.

    Over the past few years there have been some new treatments developed and now put in place for my type of rare cancer so my hope is that these new treatments may mean that others don't have to endure the treatments I had - keep well.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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