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I could really use some advice.

Joeuk
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Hi,

I have been reading this forum for a while. My mother was diagnosed with kidney cancer just under a year ago, she had her kidney removed and was given the all clear. 1 month ago she had blood in her Urine and went for more checks. We have been told she has high grade invasive bladder cancer that has grown from the outside to the inside of the bladder, it has passed completely through the bladder wall. We are awaiting the pathology report to find out more about spreads etc although we have been told it has shown signs of spreading to the urithera. What I would like to know are:

1. I'm not naive enough to know this isn't good, but in terms of life expectancy, what can we expect? 

2. They have told us it is incurable and surgery won't be an option, will they still offer chemo? 

3. How will we know when the end of her life is getting nearer? What should we expect? 

4. Can you offer any hope that this isn't as bad as it sounds? 

Thank you. We are based in the UK. 

  • Offline in reply to Joeuk

    Hi joe I'm glad you mum can have treatment you can ask nurse on here about the treatment you mum going to have . Just be there for you mum and support here I hope you got support as well its so hard to watch someone you love go though somthing like this . I always felt that my mother haven told me everything to my mother don't like us worring I can understand that but I rather know everything so I can try deal with it in my own way. Joe you not on you own there always someone on here if you need chat . Fingers crossed for next Tuesday for you mum take care sending you big hugs . 

  • Offline in reply to Joeuk

    hi joeuk, i hope you searched back on some forum posts to help you get insight into what to expect, the reason no one can tell you how long is because,         yours is a question, with many many answers...........each person is different, so truth actually is, we cant tell you..:)

  • Offline in reply to Joeuk

    and yes radiotherapy is a good thing, it can work well given time.all the best:)

  • Offline in reply to cocats

    Hi,

    We are finally booked in to see the oncologist on the 6th December. Why it's taken so limb I don't know.

     

    Last year was a high grade pT3 lower ureteric urothelial carcinoma and the kidney was removed. 

    As of now there is a high grade papillary refinance around the urithera orifice in the epithelium. In addition there is a large right iliac fossa mass that has invaded the dome of the bladder. Resection biopsy of this area have shown a high grade recurrent urothelial cancer. 

    Does this mean the cancer has mestasticised? Spread? Is an occurrence worse or better than stage 3/4 etc? 

     

    My my mother has refused a radical excision and prefers a palliative apprch with radiotherapy. 

    Can someone help me put this in to a language I better understand? 

     

    Basically i want to know if this means it's spread and ideally a stage. No one will give me a "how long" answer which I understand. Ball park? 

     

    Thank you. 

  • Offline in reply to Joeuk

    Hi Joe

    I'm sorry to hear about your mum and can empathise with your frustration at all the outstanding questions. Whilst I don't believe it is helpful to speculate about your Mum's diagnosis or prognosis, I do understand your need for answers. As other people have said, your mother's doctors are the only people who can discuss the specifics of her case with you. 

    From my own experience, my parents were so shocked when my dad was given his diagnosis and they really didn't know what questions to ask, let alone have the capacity to take in the information. I was luck in that I have a friend who is an oncologist and he gave me a list of questions to pass on to them. Perhaps you could write down the questions you want answered and show them to your mum to see if shes happy to ask them next time she sees her consultant.

    From the questions you have asked on here, it seems like it would be beneficial to know your Mum's TNM grading. Sorry if you already know this but T refers to the size of the tumor, N is the extent to which the cancer has spread to lymph nodes and M is if the cancer has metasticised. The higher the numbers, the more serious the cancer. The number that comes after the T is the general stage of the cancer... so T4N1M1 (my dad's diagnosis) would be stage 4 cancer that has spread to some lymph nodes and another area of the body.

    Once you have the staging information there are survival rates on the Cancer Research website for each type of cancer. That said, you have to remember the survival rates are an average of lots of people with this type of cancer and your mum's prognosis will depend on lots of things such as her age, level of health and fitness going in to the treatment and how she responds to chemo.

    Please do let us know how things go.

    Rachel x

  • Offline

    HI Joeuk hope everything goes ok 2moro with u mum and u will have answers 2 u question . Hope u mum and u ok take care . 

  • Offline

    HI Joeuk hope u all ok take care . 

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