Squamous Cell Bladder Cancer

Hi HelloYou and let me welcome you to this supportive group. We have several members here who have had this procedure and I am sure will be along to offer help. I hope all goes well . Best wishes.

Hi HelloYou,

I had the bladder removal op in January 2023, aged 70, after 4 cycles of chemo so have experience of what is involved. I also had squamous cells in my tumour (as well as less aggressive cancer cells). The chemo killed off the latter and the former were removed along with the bladder. I recovered well and have been clear of cancer so far since then. It took a while but am now again fit for my age.

It is a tough operation and during the preop day they discovered I had atrial fibrillation. As well as an ecg, they made us do a fit test riding a stationery bicycle which I thought I'd manage easily but it was really tough (as they made pedalling very difficult). My oncologist referred me to the cardiac team, by the way, and recently I have been treated and the fibrillation has been reversed.

The surgeons say the op is like running a marathon - I had it done robotically which entails one lying head down so they can get at the bladder - not that I knew anything about that during the op of course. And that's why you need to be fit enough to undergo it. The recovery from 5 small incisions is easier than an old-style big incision, they say.

They told me about the potential risks and complications but I was determined to do it - if you click on my name you'll see my bio, where I explain that my 63 year old mother died of bladder cancer 50 years ago because it was found too late to treat and had spread (she ignored the symptoms because she didn't trust doctors). I didn't want to go through what she had.

You don't mention chemo. Mine was done preop so by the time I had the op I was quite weak. So recovery after the op was that much harder than if it was only the operation.

I realise you don't want advice but the only point I would add here is that when deciding whether to have the operation or not my family and I concluded that quality of life matters much more than quantity. My husband (then 79) asked also what the likelihood was that I could survive 5 years postop. I can't recall what the percentage was but I am not far off that target and if I reach it will aim at another 5 years. He's now 82, and had a knee replaced 2 or 3 years ago. He could cope with having a stoma I think, although his op was under sedation and much shorter.

I also had a short course of immunotherapy after the operation.

There's a lot of info here and I hope this helps with decision-making. I would add that I have long become used to my stoma and bags. It is easy enough to do it, especially when viewed as the life-saver it is. If you can change a baby's nappy you can deal with changing a stoma bag.

Maybe your mother-in-law should ask the surgeon if she can talk with someone near her who had the op?  That would help her understand what is involved.

 I also think you need to understand what the palliative care regime might be for your mother. There will be people who can explain how they would care for her in that case. The surgeon would not probably know much about that, though will know how he expects the cancer to progress if not operated on.

All the best,

Latestart

Hi HelloYou,Welcome to the group.This must be a difficult decision for your mother in law.She will know more about the feasibility of surgery once the assessment and scan results are back.It is a big operation but any surgery carries the risk of complications.It is about quality of life.Is your mother in law experiencing many symptoms ? 
I had Squamous cell cancer and had bladder removal aged 58 in 2019.Feel free to ask any questions there is a lot of experience on here.Best wishes Jane 

I can understand that this is a really difficult decision for your Mum. When they advise about all the risks and potential complications, it is important to remember that these are only things that could happen, but they have to inform patients of the possibility. Perhaps it would help if they put numbers on it sometimes - for instance, even though I was only 57,  my surgeon said a 2% risk of death during the op, but did point out that the statistic was derived from total of all patients having the op, of all ages, degree of fitness and so on. 

If your Mum is otherwise reasonably fit and healthy and enjoying life, she may feel it worth undertaking the op. Recovery is tough, takes several months to regain energy and probably her strength would be diminished as a result, but otherwise she should have a good quality of life afterwards.  

Probably worth continuing with assessment and scans - she can always cancel at the last minute if she changes her mind, or of course they may discover something that makes them advise against surgery. Best wishes to you both.

Great reply. There is no getting away from the fact this is very major surgery ( yes i have had it) which carries significant risk, which increases with age. It’s a long recovery also. But absolutely worth undertaking pre-op assessment and possibly a second opinion based on tests. It’s a tough call.

Thank you all for your responses, it's so good to hear other peoples stories and experiences.  My MIL has been told that chemo/radio isn't an option as hers is purely squamous cell.  She is now leaning towards not wanting to go through with the op, and her husband is also in agreement but I'm not sure that's her final decision.  We are going to the assessment this week so lots more questions to be asked, and of course there is always the possibility that the medical team decide she isn't suitable for the cystectomy anyway.  I think she wants reassurance that if she decides not to have it that we support her - which of course we do but we're all so nervous about wanting to say it out loud and therefore maybe influencing her?  Thank you

Let us know how your mother in law gets on with her tests.It should be easier to come to a final decision once the results are back.Age and fitness are the main considerations if surgery is possible.I feel for your mother in law,it’s a hard decision to make.Best wishes Jane 

Thank you.  Unfortunately she is feeling too unwell to have the assessments tomorrow now so they will have to be rescheduled.  She has a UTI and is on antibiotics but unable to move around without help.  She was also vomiting and not able to eat.  

I’m so sorry to hear this.I hope she feels better soon.Love Jane xx

I'm actually quite concerned and worried that it's progressed.  Now her assessments will be later and therefore the operation (if it goes ahead).  She's really feeling very poorly, struggling to walk on her own and sleeping a lot.  But her GP didn't seem overly concerned and neither did the Urology/Oncology nurse.  I understand they can't have her in for her assessments if she's not well but it's just getting later and later and if this cancer is as aggressive as they say, could it have spread?