Transitional Cell Carcinoma - spread and treatment advise.

Hoping for some advice for my lovely Mum. In 2024 she had her kidney, ureter and part of her bladder removed due to stage 3 aggressive cancer in her ureter. This was followed up with chemo which sadly had to be stopped due to her remaining kidney struggling to cope. She managed a few months cancer free, but sadly recent scans have shown the cancer to have spread to local lymph nodes, and lymph nodes in her neck. 

We had a rather depressing Oncology apt this week. The consultant offered Immunotherapy but really pushed how this could reduce the quality of her life. We asked what would happen if she did not have this treatment and he said 'we will just scan again in 3 months and see what's happening with the cancer then'. 3 months seems like a very long time to wait for an update. We asked what a timeline might look like with no treatment and he said 'are you sure that you want me to answer this question today'. It all felt a bit cold and dismissive and I did not feel like Mum was being supported or made to feel like she had enough information to make a decision whether to have this treatment or not. 

We are all in shock and terrified of what the path ahead looks like. Mum is unsure whether to start this treatment as the consultant said it is only effective 55% of the time, and she is worried she could become very unwell. She has previously had an auto immune disease (Polymyalgia), so is extra worried. The consultant flagged very severe side effects.

We are wondering if we should get a second option with how to proceed? We know the diagnosis of her cancer will not change but we feel really floored and sort of 'left to it', which is a really horrible feeling especially knowing that she may not have long left.

  • Hello A_Russ

    I'm sorry to hear about your Mum's recent news and that the appointment with the oncologist left you feeling so cold and unsupported. It's naturally a difficult time for you all, and understandable that you want to feel that Mum is able to make the right decision for her regarding possible care options. 

    If getting a second opinion is a pathway you want to follow, then we have some information about how you can do that on our website. As you say, you want to feel that your Mum will be supported in whatever decision she makes. I don't know if you have, or were given, contact details for a specialist cancer nurse, but if you have, you can also call them to talk things through. Alternatively, you're most welcome to give our team of nurses a call. I know they will be happy to listen and offer any advice, information and support they can. If you'd like to chat with them, they're available Monday to Friday, 9am to 5pm on 0808 800 4040. 

    If Mum decides that this treatment option isn't right for her, then I'd suggest making an appointment with her GP to discuss things with them and work out a plan for the care and support that will be available to support her as her health declines. 

    Undoubtedly this is an upsetting and difficult time for you all A_Russ. Keep posting here in the Cancer Chat community if it helps to have a safe space to put down in writing how you're feeling, ask questions or chat with others who understand. We're here for you. 

    Sending you and your Mum my very best wishes, 
    Jenn
    Cancer Chat moderator