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No treatment and little information. I don't understand!

Bubbly_lis
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My mother was diagnosed with bladder cancer on 20th Dec 24, We were given little information and told she needed to wait to see a consultant.

Yesterday she saw the consultant. Apparently, from the CT scan, on the 19th Dec, that was enough for her consultant yesterday to confirm she has stage 4 Bladder cancer. She has had no other tests.

The consultant told her that Surgery would be risky due to the anaesthetic and it would be extensive but would be unlikely to be beneficial so was ruled out. He told her Chemo would be too aggressive, also unlikely to be beneficial and she would be better to enjoy the time she has left. (She can't travel due to being in pain and fatigued, even the local coffee shop is too much for her) The doctor didn't give any time frame, just said that people have lived with it for 3-4 years. However, she can't do much and from the research I've been doing, the maximum life expectancy at this stage is 12-14 month. 

I feel I need a realistic time frame, is it 3-4 years or 6-12 months? I need to know what to expect! Why no treatment at all? If it is that advanced and beyond help, surely that means it's likely she hasn't got long?

It's affecting my health both mentally and physically. I have lichen planus which has flared up, my blood pressure shoots up and I can't stop crying. I get chest pain and palpitations. We lost my dad from asthma attack when he was 38 and I was 16. memories of losing him, and having to bury him are affecting me badly. I can't cope with going through that again. It's making me unwell!  

Can someone please help me? Will it spread to her lungs so she struggles to breathe? How do we know what to expect?

  • Hello Bubbly_lis,

    Thanks for getting in touch and a warm welcome to the Online Community. I’m Heidi one of the Cancer Information Nurses here on the Macmillan Support Line.

    I can see you have joined our Bladder Cancer Forum and I hope you are finding this supportive.

    I am sorry to hear about mum’s diagnosis and it is understandable that is very distressing for you.

    Firstly, as you mentioned you get chest pain and palpations, we would always advise that you contact 999. With any new or worsening symptoms we advise that you contact your GP, NHS 111 or 999 if you are concerned.  

    Please do also see your GP or contact NHS 111 about your blood pressure and lichen planus urgently, it is important to keep safe as you are coping with a lot at the moment.

    You mentioned that you have had little information about mum’s diagnosis. Usually results, such as CT scans, as looked at by a multidisciplinary team or MDT. The MDT together will determine if any other investigations are needed or whether they have enough information to understand what is going on.

    Some tests can be invasive and uncomfortable and mum’s specialist team may not have wanted her to go through these unnecessarily. It is important however to clarify this, so you feel comfortable with why they feel treatment would not be appropriate.  

    Treatment for bladder cancer does have side effects and mum’s specialist team would usually consider the risks, the benefits, and the impact on her quality of life when deciding what the best way forward is.

    If mum has a specialist nurse at her hospital you could ask to talk this through with them so that you have some clarity. If not please feel comfortable asking for more time to discuss this with her consultant.

    There are key teams in the community that can support both mum and you, including the community palliative care team. You mentioned that she is in pain and very fatigued, and they may be beneficial in supporting with her symptom control and wellbeing. They can also discuss whether there is any practical support needed to help her.

    Please do get in touch with her GP, specialist team, or NHS 111 to have her symptoms assessed straight away.  

    It is very difficult for us on this platform to have an understanding about time frames, only her specialist team, GP or community teams would be able to support with that individual advice. I can appreciate it is important for you to know what to expect so that you can plan and prepare. The not knowing can be very difficult to cope with.

    Marie Curie have some gentle information about what to expect in the last weeks and days of life you might find helpful.

    I was very sorry to read that you lost your dad when you were only sixteen and can only imagine how distressing this was for you. Please do reach out to your GP for support with how you are feeling, especially if mum’s diagnosis has brought up a lot of bad memories for you.

    You may be able to access bereavement support through Cruse. Mind has some resources that you might find helpful.  

    We also have an emotional support forum and a friends and family forum which you might find comforting.

    You mentioned you are worried about mum’s cancer spreading and that she might struggle to breathe. The palliative care team are experts in symptom control and would do everything they can to ensure mum has the right medicines prescribed to keep her comfortable. It is important that you get the opportunity to talk through your fears with your mum’s community teams or GP so they can reassure you. 

    I hope the information helps and is a starting point. You sound like an amazing support and I can appreciate this is difficult time for you, remember to look after you too.

    Sometimes it helps to talk things through so please don’t hesitate to contact us on 0808 808 0000, we are here every day from 8am to 8pm and would welcome your call. You can also check our webpage to find details of support and information organisations in your area.

    Take care and please don’t hesitate to get in touch again if we can support you further.

     

    Best wishes

     

    Heidi

    Cancer Information Nurse Specialist 

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

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