Untreated bladder cancer

Hello, I'm so sorry you're going through this and sending best wishes to your sister. I'm not really qualified to diagnose but from extensive reading having being going through bladder cancer myself, I'm going to be honest and say it does sound like it has spread, if it's muscle invasive that means it is likely to spread without treatment, and the signs you mentioned are the typical signs you would expect. I really hope you all get some answers and the support you need at this most difficult time. 

All the very best, 

James 

Thank you James.  This is what I felt, but I just wish we could get some answers. The consultant told her at Christmas that it could be two years and so her boys have hung on to this and do not believe it's actually going to happen.  She needs to get firm with the medical profession, but she is so tired, she doesn't have the energy to keep asking and getting nowhere.  

Hello, I can understand your concerns and the difficulty of obtaining information. Has your sister been given a formal notification of terminal cancer? Quite often it appears that this notification is not given until the build up of symptoms and severity of pain is almost completely debilitating. The prior stage, which can last for many years, is being signed off by Urology/Oncology departments for palliative care i.e. symptoms will be treated when possible to maintain a decent quality of life for as long as is practical. It does not necessarily mean immediate admission to a hospice. Medical care can be given at home by District Nurses, by hospice nurses, your GP or by visiting A&E. I was signed off in mid 2019 for palliative care. At one stage I found the lack of scheduled reviews or tests or indeed detailed medical opinion on my prognosis frustrating. If your sister can, maybe with someone's help, register with the NHS system (Patient Access), it may be possible to develop a better understanding of her current situation by reviewing her medical records.  This can help when approaching specialists or other medical professionals for answers to specific questions. Ultimately though, you may find, as I did, that it is almost impossible to get a specialist to give an indication of timescale or the likely progression of the cancer. It is in many cases simply too difficult to predict. For this reason, I had to change my philosophy to one of living each day as it comes, enjoying whatever aspects I can. If my symptoms cause me concern I visit A&E who may run tests and/or provide treatment to alleviate the troublesome symptom. I'm not suggesting you or your sister should abandon attempts to obtain information. Try the Macmillan help line who can often provide a useful steer in the right direction. In the meantime, I offer my best wishes and hope that your sister receives care as required. Ray x

Gosh - that's very reassuring Ray.  I thought once the cancer started to spread, time would be short indeed.  It seemed strange that everyone says they will see her once the symptoms worsen, but that makes sense now.  Thank you for your time and for sharing your story, which has been very helpful.

Hi Housel15,Welcome to the group.I’m so sorry to hear about your sister.I presume your sister does not have a specialist nurse ? I hope Macmillan can guide you in the right direction to get some answers and advice.Best wishes Jane