Husband just diagnosed Urachal Cancer Age 45

Hi. Just posting to see if there's anyone out there with rare cancer or Urachal cancer? 

It's one in 1 million, so looking for support groups, research and ways to cope. 

  • Hello LouFur2710

    I'm sorry to hear about your husband's diagnosis. It's obviously a difficult time for you both. 

    I wanted to try and connect you up with two members [@Parkie85]‍ and [@KStanley72]‍ who have both recently posted on this thread following successful treatment for urachal cancer. Hopefully, as I've tagged them into this reply they will post to say Hello! and share their experiences with you but you may want to post on the thread I've linked as well. 

    It may also be worth having a look at the Action Bladder Cancer UK  website for information about their support groups. Sometimes it's easier to connect with others who have a rare diagnosis through a cancer-specific support group. 

    If you'd like to talk things through with one of our team of nurses at any point you're most welcome to give them a call. They're available on 0808 800 4040, Monday to Friday 9 am to 5 pm. 

    I hope this helps and wish you both all the best for your husband's treatment. 

    Cancer Chat moderator 

  • Hi Jenn,

    Thank you so much for your message. It really lifted me at a difficult time. It is so nice that you responded when nobody else has....I will definitely try to contact the other users you mention and go on the Action Bladder Cancer website. I had not heard of them before.

    My husband is doing well and had his surgery on 18 June. He's recovering really quickly. Praise the NHS and all the specialists for acting quickly. 



  • Hi Lousie

    That's fantastic news to hear that he's had is his surgery and is recovering well. Onwards and upwards for you both, and don't forget we're here if you need a chat. 

    Best wishes, 
    Cancer Chat moderator 

  • Have you joined the Urachal adenocarcinoma together we are stronger site on Facebook? Lots of people with this cancer.


  •  Hi, just wondering if you feel able to share an update on how things are. There's not much about this cancer online so looking for as much information and stories as possible. Thank you