Bladder cancer recurrence

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Hi all, it’s been a long time since I was on their community group. What a roller coaster couple of years it has been. 
my husband was diagnosed with muscle invasive bladder cancer in 2022. He had neonadjuvant chemotherapy followed by a cystoprostectomy.

All had been going well, scans were clear in the following 6 month follow ups. However in the last scan Nov 24 it has shown possible recurrence in his pelvis. Due to its position they are unable to biopsy and it is now causing bowel obstruction as it is pressing Bon his bowel. He was told he is palliative, no surgery can be performed and due to bowel obstruction no systemic treatment could be given. 
we are devasted. It just seems he has been written off? We are challenging everything and won’t give up. 
we have been going between urology and colorectal teams with differing views is this inflammatory? Is it cancer?

My husband was put on strong antibiotics for four weeks and rescanned , we hoped the ‘mass’ would have reduced but sadly it hadn’t , therefore presumed cancer now. 
He may be able to have another stoma to prevent the frequent bowel obstruction , but they said they may be unable to get a biopsy to formally diagnose the recurrence. If the stoma is performed, if he heals well, he may be offered systemic treatment. 
we just feel lost , all he has been through and still the fight continues. Has anyone else has similar recurrence ? What testament was offered ? 

  • Hi  . Sorry to hear the reason you find yourself back here. It must be a disappointment for you and your husband to find out it may have come back. Can't offer any advice, sorry, but just hope they can come up with a suitable plan. Best wishes.

    Best wishes to All,   rily.

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  • I’m so so sorry to hear this pixie27.I remember when you first joined the group.I hope something can be done to improve your husbands situation.Thinking of you both.Love and best wishes Jane xx

  • Can only echo others really and sorry to hear your news. But seek support all the time for both of you to help you navigate such an awful time. 

    Sorry I can't offer much help regarding advice etc but people are always on hand here even just forr a rant or to get things off your chest should you need to. 

    ________________

    My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all Joy

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Thank you so much Rily 

  • Thank you so much Jane x

  • Thank you so much Simon 

  • Hi pixie27,
    I may well have communicated with you a few years ago. Your name rings a bell.
    Anyway, your husbands story is so similar to mine.
    I had bladder and prostate removed in 2020, then the 6 month scans and then in 2022 a recurrence in my pelvic lymph nodes. 
    They also could not get to it to do a biopsy, and also call it palliative.
    I was lucky with timing in that I was one of the last people enrolled in clinical trial EV-302. And have been having a trial drug since  October 2022. Have had a few breaks for side effects but starting cycle 31 today.

    Unfortunately your husband would not be able to get on my trial, but I strongly recommend asking about current trials your hospital may be involved with. And if they aren’t, maybe seek out other trials at other hospitals? Who knows if other trials will be as good as mine, they may be better of course.

    try and stay positive.

    cheers
    Chasam

  • Thank you so much, I’m so pleased you have had a chance of the trial, and sounds like you are doing well. I will certainly see if there are any  t trials at our trust. 
    r really appreciate your reply