Advanced Bladder Cancer

Hi Susannah and welcome to the group although sorry to hear about your dad. It must be difficult for you living so far away. Although muscle invasive, bladder cancer can be treated successfully. Although younger than your dad, I was muscle invasive and had chemo and radiotherapy. Something your dad may ask about. Chemo has come a long way from the days your dad may be thinking about. We have had several members here in their eighties who have had bladder removal and went on to live active lives. Hopefully you can persuade him to go for further treatment if possible. I hope it goes well. Best wishes.

Hi Rily

It was the consultant that put my dad off chemo. It would be 5 days a week at a hospital, that is nearly 10 miles away for 3 weeks and he said my dad would be sick and have bowel problems.

I've recently lost my sister-in-law to cancer and it was low platelets that stopped her chemo so I know it's not a long term possibility and I suppose at my dad's age the consultant was probably right in steering him away from that treatment.

I also think my dad is picturing a catheter and carrying a bag around (which my mum has) when bladder removal was mentioned. I also think a mixture of being scared and burying his head has led to his decision. 

He has asked what I think so I'm hoping he's open to some persuasion, or at least having a full picture of what both treatments will entail will help. I've asked him to talk to the nurse that comforted him after his appointment before I see him on Sat so he should have more of an idea of to expect either way.

I'm finding lots of encouragement from these threads and forums. I feel more positive than I did on Tues anyway.

Thank you for letting me know there is hope  

Hi Susannah. Out of my experience, but keep looking in. I am sure some of our members with bladder removal will be along to share experiences and give your dad some hope. Best wishes.

Thank you Rily  

Hi Susannah

I’m so sorry to read about your dad’s situation, and I wouldn’t have thought I was a gambling person, but 50/50 might sound like pretty good odds? My surgery was more major, and I‘m 20 years younger but my odds were 70/30  when I had my surgery. I’m curious as to why there is any mention of a catheter? Yes, bladder removal results in a bag, but this is a urostomy, not a catheter. I do hope that he can come to a decision he is comfortable with, but having had my bladder removed, I can say life is very good! x

Hi SarahH21

50/50 are great odds I just think it scared my dad.

There wasn't any mention of a catheter at his appointment rather than the thoughts flying through my dad's mind when bladder removal was mentioned! Dad thought the cystoscopy was the worst pain he's ever gone through.

I honestly don't think he asked any questions about either chemo or surgery.

Urostomy looks far less frightening than he's imagining and the bag is very discreet. 

I'm hopeful with all the information I have gathered he can make an informed decision.

Thank you for letting me know that life is good after having your bladder removed. It's another positive I can give to my dad x

Dear Susannah, what a challenge Dad and you face.

Thinking from the angle of his caring role for your Mum, if he opts for no treatment she is going to be forced into a care home when he gets too sick, [an awful decision point for him] then widowed and stuck there for the rest of her days, if I have understood correctly? If he has a major op he will be unable to care for her for a good while [she could have 'respite care' in a care home?] but probably able to get back to caring from her sometime if that is what he wants to do.

In your shoes I would be insisting the consultant explain [try calling his secretary] just what he meant by 50:50. I doubt the anaesthetist would start the op if they thought it that likely he would die on the table, they are suitably cautious. I guess it is possible that the 50/50 may refer more to chance of cure from the cancer. But the only way to find out is ask. You will find a lot of people on here recommending doing more asking, only if you do will you get the answers you need. You do not want to be thinking 'if only' or 'what if' in five years' time.

Really sorry if it seems brutal how I have set things out. But I hope it helps you help your Dad see things differently and get better info. I regret that some doctors do not treat persons of your Dad's age as being 'up for' major, but life-extending, surgery without really checking out their attitude. Virtually write them off. And sadly many of his generation have been bred to rather automatically go along with 'Doctor knows best.' Again sorry if this seems rant-ish; I am only 64 but my husband [with bladder cancer] is 77 [78 in August] so not that much younger than your Dad. However he looks younger and so I think gets a different attitude. But there is no way he would give up if his next biopsy [soon] comes back with a cancer recurrence, so why should your Dad?

So hoping my ponderings give you helpful food for thought. Anyway do sign up with your local Carers' Association, as you may get useful support for yourself.

Best wishes, 

Denby

Hi Susannah

I appreciate that I am 20 years younger. But I lost my colon at the same time as my bladder so I also have a colostomy and had everything else in my pelvis removed. It’s amazing what you can cope with, truly. I really hope your dad makes the decision which is right for him, but having a bag, or 2 bags in my case, can be done, maybe more easily than the initial fear of it would have you believe. x

Hi Susannah,Welcome to the group.I had a rarer type of muscle invasive bladder cancer which was aggressive.I had my bladder removed in 2019.It is a big operation and the recovery takes time,a few months usually.I was a full time carer for my disabled mother when I got cancer.I had to put mum into respite care for a year.Eight months after my cystectomy I had mum back home with the help of two carers and it was very hard work.Mum’s health declined and she ended up in hospital.It was then decided by health professionals that she required full nursing care.She has been in a nursing home for a year.If your dad does have his bladder out he would need to have help for himself afterwards for the first week or two.I have a good life and manage well with a stoma but it’s been a long road to recovery and I have never regained the stamina I had before the op.I think a lot depends on your general fitness beforehand.As your dad is fit he might be able to cope with the surgery.Best wishes.Jane

Hi again, sorry to hear the cystoscopy was so painful. Just to help him recover with less chance of an infection, it is really good to drink lots of properly diluted Robinson's Lemon Barley Water. This tip came from my GP 42 years ago and many on here will vouch for it.

It is worth informing the medical team about the pain, as they can be extra careful to ensure sufficient pain relief for any future procedure. Staff would hate to think any patient did not get the right pain relief, though once again some chaps have been brainwashed [my late mother in law had a lot to answer for] to 'not make a fuss' But everyone is different in how things affect them, so always ask if more relief is needed.

Denby