To operate or not?

Hello Jill, I've been on this forum for over two years and have gained some insight which may be relevant to your question. I was diagnosed when 68 in 2017 and although my symptoms passed through a very touch and go stage in early 2018, my treatment ended after radiotherapy (2017) followed by an emergency TURBT then a follow up to stem the severe bleeding in 2018. Since then, I have been living independently with only palliative care by driving myself to A&E at the local hospital when required. Bladder removal was discussed for my non-muscle invasive bladder cancer (7cm lesion) but the multi-disciplinary team considered that, although I was reasonably fit, a heart murmur (mitral valve regurgitation) which made even a TURBT more risky, made bladder removal an option which would not be considered until all other treatment courses had been exhausted. Bladder removal is a big operation which ideally requires a patient to be devoid of co-morbidities. Age is also a factor. Generally, the team will weigh these factors for each patient before making a recommendation based on the data they have from tests, scans etc. and their judgement regarding the patient's medical history plus their ability to manage the typical recovery and subsequent alternative urinary plumbing arrangements (stoma, bags etc).

My advice would be for you both to absorb as much advice as possible from your health team, seek a second opinion if you feel uncertain about aspects of the advice, ask lots of questions then make your decision regarding the treatment option offered. This means that there is no single answer to the question. Nevertheless, I hope you receive the best advice for your dad and have the best possible outcome, whatever the path taken. I am sure others on here who have had their bladder removed will respond soon, tomorrow being most likely. I'm a night owl in the UK, hence my response at 2-32am despite still having my bladder!!  Best wishes, Ray

Thank you so much for this thoughtful response - I greatly appreciate it.

Hi Jill,Welcome to the group.If you click on my name you can see my story.I don’t think the surgery would have too much impact on your dad’s life afterwards.You can still lead a full and active life once you have recovered.It is a big operation though and not without risk of complications.You do feel weak and incredibly tired post op and recovery usually takes a few months.I didn’t find the surgery as bad as I expected but the recovery was slow going.You do have to listen to your body and rest when it tells you to.Recovery is marathon not a sprint but over the weeks energy levels begin to pick up.Some weeks/days feel better than others.I remember at the end of 12 weeks waking up and feeling like I had turned a corner and began getting stronger.After 8 months I went back to work as my late mum’s carer but I did find it tiring.I don’t miss my bladder at all life with a stoma is much easier and pain free.Best wishes to your dad with his decision.Jane 

Hi, Jill,

I had the operation 3 years ago aged 70 and since then have had a good quality of life. In fact the things that are most troublesome now eg heart were those found while undergoing chemotherapy, during which we get regular CT scans and the reports show whatever is there - shoulders to groin.

The first question you might ask is about how your father thinks about life eg quality or quantity? Plus are there any stats for life expectancy after big operations for those over 80

Another might be to ask whether he feels that the cancer must come out or not - some people (like me) couldn't bear the former, others if having suitable treatment don't stress about it.

Another would be, beside the bladder removal, what other treatment would they give him to damp down the cancer growth pre or post op eg oncology: chemotherapy or immunotherapy. Both have side effects that can affect patients. Chemo preop to get rid of as much of the tumour as they could  meant I was very much weakened by the time they operated. And in fact the anaesthetists were not very confident that I could cope with the op. I suspect they may be the ones your father needs to convince if he decides to go ahead. I had kept as mobile as possible - daily walks etc to make sure.

I also had immunotherapy post op as the cancer that had not been killed off (and so was removed along with the bladder) was aggressive and might recur or spread.

Then, is your father dextrous enough to cope with the stoma and bags? Cleaning the stoma and surrounding skin (where the bag adheres) isn't hard (it's very similar to what I was taught to do when changing my daughter's nappy 46 years ago). But keeping things clean is essential, given the possibility of kidney infections which can be difficult for us older people. And getting the bag properly fixed to avoid leaks (which can affect comfort, confidence etc) needs a certain degree of precision.

It's easy when you know how and stoma nurses are good at teaching us, but it's worth thinking about how he would cope. Now I have learnt to fix them on properly I change my bags every 2 days. Others do it after a daily shower but I have sensitive skin so keep them longer to avoid skin problems.

Finally, the actual operation takes around 5 hours at least if done via robotically assisted small incisions. I didn't find it very tough and in fact the relief it was all over (and I'd survived) carried me along for days. I picked up my daily walks quickly and with excellent care from my daughter and son-in-law grew stronger daily.

If you look at my profile you'll see that they had 2 patients as my husband (then 78) had had a heart attack by my bedside in the ICU from all the stress (followed by a triple bypass). So in fact I took on some caring duties once he was home and more or less forgot about my own op. He sailed through a knee replacement 18 months ago. And our quality of life is still good

I hope this rather warts and all review  is helpful. Good luck to your father, try and get input from each specialism that might be involved in his care and make them look at him as a person not a statistic. Have second opinions if you need them I had one which replicated what my own hospital proposed so I carried on with the hospital.

All the best,

Latestart

It is a hard decision at such a venerable age. I am "only" 75 and had my kidney removed a year ago and am currently under treatment for bladder cancer. I have already told my consultant that if I get to the stage where it cannot be kept at bay with the immunotherapy etc and the only option is removal then I will say no. He told me that were I any older he would not have taken my kidney out so he quite understood. It took me a long time to recover from the kidney removal. I think we are all different in our priorities. I feel I have had a good innings and have to go sometime .. a slightly older friend is the opposite and wants any treatment to keep her going as long as possible. So at the end of the day it rather depends on what your dad really feels about it all and what his own priorities may be. Quality of life is hugely important especially as we age and other things also make life less easy... so I would suggest getting another opinion as it seems different health authorities and different consultants can vary widely in their approach. It is not a black and white thing at all which makes these decisions so tricky. Very best of luck with reaching a decision. Hopefully someone may pop in who has direct experience of this at such a late stage of life. The difference between say 70 and 86 is usually quite considerable in ones ability to bounce back but maybe your dad's fitness is a factor in the consultant's preparedness to offer the option..

I had my CT at 68. I am now fine and in remission. This is very major surgery and carries a significant risk of morality in theatre and afterwards for some time, plus a high rate of complications. So you only really want to do it if you have no other choice. That said, many of us on the forum have been though it and life with a bag for life is pretty good.

You and your dad need to understand the pros and cons of surgery and make up your mind talking to your consultant, and ideally getting a second opinion.

all the best,

Leo

Great reply  5 hours it very quick for this type of surgery, 7 to 8 hours is more typical.

Yes. I was expecting it to be longer and for them to remove uterus etc but I think they did the basics after I had a slight complication on the table plus having had a clot in my lung  in the weeks leading up to the operation which delayed the operation and meant me injecting blood thinners to get rid of it. They do a lot of these ops in that hospital so they're quick with the robot. The anaesthetist wasn't terribly  happy before the operation - she was the senior one in the department -  but it turned out fine, fortunately. 

Thank you