Muscle invasive bladder cancer

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I have recently had TURBT operation to remove a large necrotic bladder tumour, they only managed to remove 80% of the tumour. It is muscle invasive and has spread to 2 lymph nodes near the badder and possibly my lungs. I had to come home with a catheter which can get very uncomfortable . I am trying to be positive and will try and face whatever treatment they offer but sometimes I feel so overwhelmed. I’m lucky that my husband is very supportive. However, my one daughter doesn’t know what to say to me, my eldest daughter gets upset and starts crying and my son has Asperger’s but if I mention that I am tired, he tells me that I must be dying. They are all adults over 40 and neither daughter has visited  me since my diagnosis..
How has  everyone coped with the waiting to hear about what treatment is going to be offered?

  • Hi Ellie May,Welcome to this friendly supportive group.I’m sorry to hear about your diagnosis.Waiting is horrible but most people feel considerably better mentally once they have a treatment plan.It’s best to take things one step at a time and stay away from Google.A few of us had muscle invasive cancer  and you will get plenty of support and advice here.Tiredness is common it will be a mixture of the cancer and the emotions that go with being diagnosed.Keep posting and ask questions if you have any.We are all here to help and support you through.Jane x

  • Hi  and a welcome from me. As jane says, the waiting and uncertainty can be the worst time. Once a treatment plan is in place then things become slightly easier as you have something positive to focus on. People do tend to stay away in the early days mainly because they do not what to say. Your family will come round when they get used to the situation. Don't be surprised if you are called for a second follow up TURBT. Quite common and not usually as severe as the first. I was muscle invasive but ok so far. Lots of experience here so feel free to ask any questions or just talk. Best wishes.

    Best wishes to All,   rily.

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  • Hi. Sorry about your diagnosis. My hubby has just had a bladder, prostate and lymph node removal. He's home now and has a stoma. We're managing fine. Our daughter ( a single parent in her 40s) was initially terrified and kept crying, but once we let her have some space to absorb the situation, she came to us and we sat and explained what was going to happen. Our grandson (24) took it better and came to help us. Now, we're all closer than ever. People have to deal with the information that a lived one has cancer, in their own way. Some people don't know how to approach the situation and have difficulty expressing their fears and thoughts. Others may ignore you. And others might help you. Perhaps calling your daughters might help. Give them time. Your son needs to be told that you're not dying. My brother has aspergers and it's challenging to say the least. I told him about my hubby's diagnosis and his reply was " when will he die?" It might be offensive to people, but knowing how people with aspergers think, it was just a case of telling him to stop asking that as it was rude. I hope this helps you. Keep fighting and I wish you well.

  • Thank you for your reply. I hope your husband continues to do well. 

  • Hi Ellie May. You could try suggesting to your children that they call the MacMillan helpline, number is right down the page. The helpline will listen and maybe signpost them to suitable help.

    best, 

    Denby

  • I recently had a TURBT several days after this i was admitted to hospital with breathing difficulty,  as a  result it is thought that the cancers spread  to my lungs Visited Macmillan yesterday and they did a chest xray. They are working on a treatment to slow the cancer down., I also  am  at a loss with my thoughts I am 79 but it still comes as a shock chin up Ellie wish you all the very best. xxx

  • Thanks for your message. It will be four weeks since my op by the time I get my chest  CT even though it was classed as urgent. My biopsy came back last week as stage 3 T2 muscle invasive. The hardest part is the waiting - after the chest X-ray, they have got to have an MDT meeting to discuss a treatment plan so time is marching on.  Chemo has been mentioned but it all depends on the CT scan of my lungs. 
    I’m trying to keep positive and keep to some form of normality but I am getting so tired, mainly because I am up at least six times during the night to go to the loo. 
    I’m 75, was normally fit and healthy apart from osteoarthritis so this came out of the blue. 
    I hope they find a treatment to slow down your cancer and I wish you all the best.