male with bladder cancer and vascular dementia

Hi Helsbob and welcome to the group, although sorry to hear about your dad and the situation you find yourself in. Looking at your other post, I assume you mean bladder cancer rather than bowel cancer. The op your dad will have had so far to scrape the tumour is called a TURBT (trans urethral resection on bladder tumour). Most of us here have had this done. Bladder removal is a big op. I was also stage 3 and went a different direction with radiotherapy, so not able to help with bladder removal. Obviously the dementia has a big bearing on things and a big decision for your family. Others here who have had removal should be along to offer experience of the op and follow up recovery. Best wishes.

Yes.. sorry don’t know where bowel came from. It is bladder cancer.
This is all very new to me and I am not familiar with the correct terminology as of yet so thank you for that.
Only my stepmum is allowed to visit the hospital with him (understandable at the moment) so we get the details from her rather than straight from the consultant.

Feel a bit lost at the moment as my siblings are for the bladder removal but I would like to hear other people’s experiences.

Thanks once again rily 

What a dilemma for you. My father had Alzheimer’s, so I am speaking from some experience. Personally I think bladder removal would not be in his best interests. As he is already life limited from the dementia, my thoughts would be to make the remaining time as pleasant as possible. The rigours of bladder removal surgery would probably exacerbate the dementia and the months of recovery, even if in good health beforehand, could well be too much for all concerned. Very best wishes.

Welcome Helsbob and also so sorry to hear of this situation. Just thinking about the dementia deterioration. Am I correct in assuming the TURBT /scrape was under general anaesthetic? It is not publicised, but as I understand it, every general anaesthetic causes a small degree of oxygen loss to the brain which in most cases does not cause noticeable cognitive deficit. [It's often said most of us run most of the time on a fraction of the 'brainpower' we have...] But perhaps did cause worsening because of the vascular nature of your Dad's dementia? You might like to grill an anaesthetist about this if you could, and press them as to the likelihood of it being even worse if he were to undergo an extremely long anaesthetic which would be required for a bladder removal.

Best wishes to you and your family, 

Denby

Hi Denby, yes it was a general anaesthetic he had for the TURBT. I will try and talk to an anaesthetist. Thanks for the advice. 

Hi Helsbob,Personally having cared for my mum with advanced vascular dementia I would be concerned about your dad having a cystectomy.It is major surgery which takes hours.There is the anaesthetic to consider and also the risk of complications which can happen.Your dad would have to be able to keep the area around the stoma clean and change the bag.If he couldn’t do that then he would have to have help.The bag has to be emptied regularly.Recovery from a cystectomy takes months rather than weeks.You feel weak and tired afterwards and have to build up strength.I think this would be a lot for your dad to cope with,he might find it distressing.It is a difficult situation for you and your family.Best wishes Jane x

You could also try this website for info & support with dementia:  https://www.dementiauk.org

In my working life we had to deal with issues of consent & making decisions on nehalf of someone unable to give consent. It is hard to weigh up what is in their best interests & often that is not what you would necessarily choose for yourself. Perhaps even if you can't attend appointments, you could talk to the consultant. A lot will depend on who has the say - eg is there a Power of Attorney for health matters? This is useful reading:

https://patient.info/doctor/consent-to-treatment-mental-capacity-and-mental-health-legislation

Hi Teasswill, thank you for the advice. POA is in place, my stepmum has the final say which is acceptable with us. His GP has said he is not fit for any operation in the next fortnight. I know my stepmum is leaning towards the TURBT again but he can’t carry on having that done every 3 months? Feel so sorry for him. I’m beginning to think he should just be made comfortable than being put through these operations. 

It is a horrible situation for your dad and your family.Your dad would have to be assessed as fit for surgery if the cystectomy went ahead.My mum’s dementia has got worse each time she has had any medical problem,especially after mini strokes.She was meant to have a cataract operation but hasn’t been well enough.How long has your dad had dementia ? Love Jane 

It started last summer coincidentally after a nasty abscess on his leg and discovering he was allergic to penicillin but formal diagnosis didn’t happen till May this year. That’s what I’m hoping for a medical professional to take the decision out of our hands.